Pharmaceutical companies are constantly trying to outdo each other and to come up with new patentable drugs for diseases that already have existing drug treatments.. A good example of this is teriparatide, or Forteo in the US (Forsteo abroad), a new class of osteoporosis drug known as anabolic agents. This daily injectable drug was approved by the FDA in 2002.

Forteo is an incomplete synthetic or man-made form of the human parathyroid hormone (PTH). You see, human PTH has 84 amino acid residues but teriparatide has only 34. Teriparatide has become the osteoporosis drug of choice mainly for patients who can’t tolerate bisphosphonates, have failed to improve with bisphosphonate therapy, or suffer from extreme bone loss.

As touted on the drug’s insert, Forteo “increases bone mineral density and bone strength.”

## Many unanswered questions

But the puzzling catch with Forteo is that the way in which it works remains a mystery. This is openly acknowledged by its maker, pharmaceutical giant Eli Lilly and Company. The drug’s brochure states that “the role of PTH in control of bone mass is still not really understood” and that “intermittent spikes of PTH, such as given by daily injection, will cause more increase in bone formation than in bone resorption… This has been shown in rats.”

Unfortunately, what has also been shown in rats is the development of osteosarcoma, a lethal bone cancer caused by an abnormal proliferation of osteoblasts or bone-forming cells. Below, I quote again from Eli Lilly’s pamphlet (http://pi.lilly.com/us/forteo-medguide.pdf):

“During the drug testing process, the medicine in Forteo caused some rats to develop a bone cancer called osteosarcoma. In people, osteosarcoma is a serious but rare cancer. Osteosarcoma has been reported rarely in people who took Forteo. It is not known if people who take Forteo have a higher chance of getting osteosarcoma.”

Because of this serious side effect risk, Forteo is prescribed for a maximum of two years. This is as close as one can get to playing Russian roulette! Who would trade a potential fracture for the awful risk of acquiring a lethal cancer? And as if this were not enough, teriparatide has a long list of nasty side effects such as joint and chest pain, muscle pain and weakness, esophageal problems, nausea, and vomiting. Plus having to inject oneself subcutaneously each and every day is most certainly no picnic.

## Exorbitant price tag leads to exorbitant profits

The unanswered questions don’t seem to hamper Forteo’s skyrocketing success. According to drug-industry analysts, an estimated 600,000 prescriptions were written in 2005, which generated more than $350 million in revenue. And in 2008, Eli Lilly reported$778 million in sales. (http://newsroom.lilly.com/ReleaseDetail.cfm?releaseid=362195).

Indeed, the future looks bright for Forteo. As predicted by Pharmacor’s June 2009 osteoporosis report, by 2018 Forteo sales may reach close to the $2 billion mark. One easy way to explain these numbers is Forteo’s exorbitant price tag. It costs nearly eight times as much as bisphosphonates, running up a tab of about$6,700 a year. That’s a pretty high cost for a drug whose mechanism is not even remotely understood!

## Doctors ignore ignorance?

Another puzzling aspect of this drug is that while doctors openly admit their ignorance regarding how it works, they choose to prescribe it anyway.

Dr. Roberto Pacifici, head of the division of endocrinology at Emory University School of Medicine, comments that “…how intermittent treatment (with teriparatide) works has remained a mystery”. (http://whsc.emory.edu/home/news/releases/2009/09/bone-building-hormone.html).

This is clearly a rather unusual and perplexing situation to say the least.

And it sounds like a job for Agent 4T0…

## Mission: Impossible

Remember the TV series with this name? I used to be a big fan of Mission: Impossible. Each episode began with secret recorded instructions to the brave agents describing a very complex and often dangerous mission. The agents could decide whether to accept the mission or not. Of course, the fearless members of the Impossible Mission Force (IMF) never walked away and in the end, always succeeded. But here’s what happens when a reluctant osteoporosis drug is the agent chosen for the mission… Read my Mission: Impossible spoof below:

“Good morning, Mr. Paratide. Your mission, should you decide to accept it, comes from the top boss, Big P.”

“You can call me Terry… What is my mission?”

“First, from now on your new name is Agent 4T0. Your mission is to strengthen this patient’s bones and report back to us detailing exactly what you did. And you have to report back to us fast, 4T0. Time is running out.”

“Well, I may be able to strengthen the bones, but I have no idea of what I’m doing! Big P knows that we’ve been trying to find out without success. I need written instructions!”

“You’re the ACTIVE INGREDIENT, for crying out loud! Plus Big P has given you a team of helpers…”

“What… you mean the Inactive Ingredients? I don’t see how glacial acetic acid, sodium acetate, mannitol, metacresol, and hydrochloric acid can help me. They’re INACTIVE, remember?”

“Stop acting like a coward, 4T0. Here’s a little secret for you: metacresol is highly flammable and poisonous – even lethal in the right dose. It can help you solve this mystery if anyone gets in your way. So get creative and solve it once and for all.”

“I’m not a fighter! I’m just a synthetic wannabe, I don’t know what to say…”

“Remember our motto: Ignorance is Strength. You don’t have to know anything… nobody has to know anything… that’s our strength, 4T0. Big P’s survival depends on ignorance. Just invent something and Big P will make sure that everyone will take our word for it.”

“Yes, I know that’s the way we’ve been operating in the past, but now people are waking up real fast…Why me, why me?”

“This tape will self-destruct in five seconds.”

“Oh, nooooooo!”

So there you have it.

Were you prescribed Forteo? Even if you weren’t, please share your experiences, thoughts, and comments with the community below.

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953 comments. Leave Yours Now →
1. Vikki July 9, 2019, 11:54 pm

Having suffered broken L3 & L5 vertebrae within 5 months when 67 I was prescribed Forteo. I self-injected each day for 16 months. Well into my treatment Vitamin D was discussed and I commenced 5000 units/day. At the end of treatment I was prescribed Prolia by my rheumatologist. My bone density tests showed great improvement and after discussion with my primary care physician I chose not to take Prolia. The results of my next annual bone density test with respect to Prolia or alternative Rx will be discussed to ensure bone health. Meanwhile, I continue to take 5000 units of Vitamin D.
Additionally, I have a preliminary diagnosis by JHopkins & VA Cancer Specialists of CML or CMML. No link to Forteo has been mentioned.

2. Joanna June 19, 2019, 6:44 pm

Two months ago I finished the 2-year Forteo treatment. Although I Experienced some bi vertigo when taking it, and for that reason always did it in the evening, I otherwise had great results in terms of building bone mass and feeling strong, much stronger. Now I have a dilemma! I have normally never taken drugs ever. Always the natural treatment path. Now I am being told that if I don’t take Fosamax or Reclast, I will lose all that I gained! I believe that Fosamax would be too hard on my digestive tract and I believe that Reclast would be too hard on my kidneys. So now I don’t know what to do. I feel great, but I’m being told that I will lose all that I gained if I don’t take one of the drugs. Does anyone have any experience of doing the two-year treatment and then not continuing with another drug therapy? Did you lose all that you gained?

• Beverly Tobin July 28, 2019, 2:13 pm

Joanna
I’m in the same boat. Ready to stop Forteo abruptly but can’t find studies that tell me if it is safe. Did you get an answer to your question? What did you do?

3. Jameson May 31, 2019, 9:49 am

I’ve been on Forteo for 20 months now. Just wanted others to know I am a 60 yr old female with several previous fractures so my dr put me on Forteo. I have had NO SIDE EFFECTS! The shots are easy, since the mini-needles are so tiny you don’t even feel them. There seems to be 99% horror stories about Forteo on this site so I thought I’d share my positive experience thus far. Haven’t had a DEXA scan yet, won’t know results until my 2 yrs are up but I am happy to be on this drug in case it works well for me 🙂 I don’t understand all the negative reviews…my dr told me the first several weeks you would probably experience some “growing pains” in bone as your body adjusts to the increase in calcium. Had very slight growing pains at first but subsided by 6 weeks. No problems with it!

• Sherry Nix June 24, 2019, 9:34 am

I have been on Forteo for 23 days. Thank you for sharing your experience! I’ve searched to see if any one had suffered growth pains.
I think that may be what I am feeling. Could be a good indicator that it is working.??
I have also noticed mood/mental confusion. I am hoping that this will improve as my body adjusts to Forteo.
With no other significant treatment available, I am afraid to stop trying this.
I am 61 and hope to improve and enjoy my life again.
Thanks again!
Sherry

4. Paul Ellis January 27, 2019, 6:45 am

Ana (Sept 11 2018,, Perhaps you should consider

https://americanbonehealth.org/bonesense/why-strontium-is-not-good-for-bone-health/

5. Marvis Brown December 26, 2018, 2:31 pm

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6. Mom of 3 October 28, 2018, 5:05 am

I have been on Forteo for 13 months and my lumbar bone density increased 5.2%. My hips worsened by 3.4%. At the time I was recovering from a shattered shoulder and had reverse shoulder replacement. I am early 60s. I use bi-est cream and progesterone cream and take 100 micrograms levoxyl daily . When I first started injecting Forteo, I lost energy and became disinterested in life. I use caffeine but found that when I added testosterone cream in small amounts, I felt more normal. I am also dizzier. I exercise my lower body a lot and do vigorous walking 5 to 6 days a week. 2.5 miles up a big hill and down. I only started my lower body exercise the last 6 months. I have jumping exercises that I am only starting to get back to and feel that having neglected that for most of last year may account for the hip density loss. I am also doing a med ex back machine and Roman Chair exercise which I think increases back muscle and maybe glute muscle tension. Stronger muscles are thought to exert a tension on bones that favors bone formation.

• Robert Grew December 25, 2018, 11:31 am

I found your comments interesting especially since I have a very damaged shoulder with my surgeon recommending total reverse shoulder replacement. I on have been on Forteo for 2.5 months, and an elderly man of 83 and have experienced daily pain from an auto collision 43 years ago. At the end of July in simply twisting in a standing position received a compression fracture of T-11 and before I could get a Kyphoplasty injection the vertebra collapsed 80% and a bone scan revealed severe oteoporosis. Since my forteo injections I have been experiencing more severe nightly pain and stiffness, in new places such as in my replaced knees. Waking in mid night I am in severe pain with any mov
ement, greater than in the past 43 years of daily pain. Of course I am in a quandry as to losing he bone-building benefit of forteo vs quite an increase in whole body pain.

• Sherry June 24, 2019, 9:42 am

I’ve only taken Forteo for 23 days and bone pain has been the biggest symptom. I am hoping it is an indicator of bone growth as it feels similar to that I experienced as a child.
I hope that you do well!

7. M. Anderson September 29, 2018, 6:26 pm

I’m a 48 year old female with RA. I’ve been on prednisone for over 10 years for my RA. I was diagnosed with osteoporosis when I was 36 after a wrist fracture. In the last two years I’ve fractured 2 ribs and recently am recovering from several spontaneous fractures in my pelvis ( 6 total). Spent the whole summer on total bed rest. I still have young children at home and one with a disability. I’ve tried recast, proliea? and I started Forteo about a month ago. My biggest concern is the risk of cancer. I’m already on immune suppressants due to RA. I take Xeltranz, used to take Rituxian. I wasn’t given much of a choice about Forteo the doctor said my bones were so bad I had to start it. All my fractures were w/no trama. I want to be alive and have a good quality of life long enough to see my children get married etc. Worried most about long term effects.

• kelley funderburg, FNP March 15, 2019, 11:27 am

M Anderson. The studies that cover 10 years 2009-2019 show no patient registered ( there is a Forteo registry since 2009) matches the list of people diagnosed with osteosarcoma. Even if there are a few, it doesn’t mean it was caused by Forteo. All medications have risks and benefits. I would think your risk would be very high of an adverse long term complication from breaking a bone with your history. Please don’t worry about a “possible” risk and one that so far has not shown to be substantial in humans. I do prescribe Forteo in my practice and have been very happy with my patients outcomes…. because they are also happy with the improvements. I get no money and any compensation from prescribing Forteo. I am just a regular Nurse Practitioner trying to help patients with pain from frequent fractures.

8. Dorothy September 20, 2018, 10:34 pm

While I realize that Forteo can have nasty side effects, I thought people researching that drug should know about me. I have been taking Forteo injections for 15 months and have suffered no side effects at all. What’s more my chronic problem with severe back pain has vanished, presumably because some kind of fracture that was causing the pain has now been filled in. I could not be happier with Forteo and I thought those of you who are still thinking about taking it should know. Too often the only people who speak out are people who have had bad experiences. I realize that no two cases are the same and that nasty side effects are possible. In fact, I too could have nasty side effects eventually. But so far, Forteo has been a miracle drug for me. By the way, before I started taking that drug I got a consultation/second opinion from a leading osteoporosis doctor at a major medical center. He concurred with my local doctor and shortly thereafter I began taking Forteo.

• Anne Erickson December 25, 2018, 2:43 pm

I have just been recommended to take FORTEO and am wondering if it is safe enough after reading some of the reports of some of the people. Yours seems to be a positve one. I am also concerned about giving myself the shots as my skin is kind of sensitive. (and I don’t like needles)

• Laura Selzer May 14, 2019, 3:05 pm

The needles are TINY. You really don’t feel it at all! The hardest part is travelling with the drug because you have to keep it cool. I used cool gel packs in a Yeti water bottle. Has worked just fine.

• Tom July 22, 2019, 1:23 pm

I was on Forteo for 2 years and continued to have fractures while on it. My bone density did improve and Forteo is the only med that actually helps grow new bone unlike Bisphosphonates which actually prevent the formation of new bone and basically makes your body keep old brittle bone it would normally get rid of. Sure your DEXA scans show increased bone density but the bone is old brittle bone that is normally discarded. Even after Forteo my bone density increase was temporary and not worth it in my opinion. My teeth started breaking off when taking Forteo and I had perfect teeth my whole life. I wound up having to get them extracted they were so destroyed and will be getting dentures. I became a vegetarian and started following the save our bones program loosely as well as taking a veal bone supplement called Boisil. I put my life at risk and lost all my teeth for about 8 months of increased bone density and even suffered compression fractures while on the medication. My Dr prescribed Prolia after Forteo and after two shots (one every 6 months of Prolia) I had done enough research to say no more. I wish I had known what I know now about Osteoporosis when I first got it. Watch some seminars by holistic Dr’s on youtube regarding Osteoporosis and do all the research you can because just sitting back and letting some Dr. make some of the most important decisions of your life is NOT the way to go.

9. ana September 11, 2018, 1:23 am

I am so sorry to hear of all your struggles and suffering. I have been prescribed fosamax, boniva, forteo, prolia, in addition to taking some hormones — estrogen alone, then with progesterone…..I take strontium citrate now 2 hrs after final dinner meal, then magnesium upon morning awakening, then 2 hrs later calcium with d3 and k2 with mq7 with some food, then at least 1 hr later a multi with some food. I am hopeful this will eventually [once the after effects of those pharma nasty drugs dissipate] naturally strengthen my bones. I have no side effects and it costs less that $10 per month. Strontium [not ranelate] was used to strengthen bone and teeth from 1850 to 1955 until big pharma decided they could not patent a natural element. So, they started trying to synthesize something to equal or replace it — and they still are. The best thing to do is read up on strontium citrate [not strontium ranelate a synthetic created in Europe. I just discovered they should not use forteo with or within 2 years of using any bisphosphanate or it will cause fractures. They don’t tell you that. Prolia will cause rebound fractures when you discontinue it and neither will build bone as quickly as Strontium citrate. They will say there are no studies for strontium citrate but the proof is those who take it STOP HAVING FRACTURES. I have never fallen or had a traumatic fracture. I have spontaneous fractures–just drying my hair or turning on the sink or taking a shower or picking up my cellphone. These are caused by the BAD DRUGS especially in combination with one another. I do have a family history but even my mother who hardly ate and drank 8 oz of vodka daily didn’t have spontaneous fractures….she had to have trauma to break a bone. I am 71 and aside from breaking L3 10 years ago lifting an awkward box did not fracture again until 2 years ago when 11 spontaneous fractures just kept happening. I hope you will read up and investigate and come up with a plan to try the natural treatment with strontium citrate. I don’t think it will hurt you at all and certainly will be kinder to your poor tortured bones and body. If I come up with the ideal protocol I will post it here when I do. We can all help one another much more quickly and efficiently than the doctors are willing or able to do. It’s up to us to help and heal ourselves. • Paul Ellis January 27, 2019, 6:46 am Ana, Have you considered: https://americanbonehealth.org/bonesense/why-strontium-is-not-good-for-bone-health/ Regards – Paul • Katz October 24, 2018, 12:23 pm Hi. Thank you for this information. I really appreciate it. Im 59 & just completed two years of Forteo. Ive never taken a Boniva-type drug but they want me too. Im scared of jaw necrosis (Ive always had jaw issues). Anyhow, I was a little confused About fractures. I hope my Forteo treatment will not cause this. I am going to research strontium citrate now! Any other natural remedies that have helped? Please forward. My Doc says I will start losing bone & go right back to Osteoporosis if I don’t take a biophosphate (Boniva, reclast). She wants me to do a one year IV of reclast. Thanks again. • John October 14, 2018, 3:50 am You should read this related article. https://americanbonehealth.org/bonesense/why-strontium-is-not-good-for-bone-health/ 10. jules July 19, 2018, 12:52 pm I don’t know exactly how prayer works, either; but it’s an important part of my life. 11. Jan June 26, 2018, 6:51 pm I’ve had cervical surgery for bone spur flattened spinal cord in neck. I have 2 L- fractures confirmed (and 1 unconfirmed) by X-ray; only the first one from a bad fall on my “tail,” other two by in-home activities. I took Presnisone for an auto-immune disease for about 2 years, caused major weight gain and glaucoma, and I suspect weakened bones. I have an intolerance to other steroids (causes glaucoma). Have shown intolerance (many dangerous) to many other prescribed drugs. A recent DEXA bone scan test showed me at -3 severe osteo, especially left hip and arms. Two of my pcps (primary care providers) encouraged me to begin Forteo. My history of med intolerance and the many negative reviews about Forteo scared me. Consultations with my respected pharmacist and pcps encouraged me to begin Forteo, which I did almost a month ago. I am beginning my second round (28 days) taking it by daily self-injection. At first my husband did them for me, but when he had to be gone in a few days, it was difficult for me to do them but I found it’s no big deal. I’ve had no side-effects (my biggest fear). • JAMES MEYER August 9, 2018, 10:32 pm Hi Jan , My Wife has just started and she is possibly experiencing a mild dizzy spell or two after taking it for a week . You have a couple more months then my wife so anything issues you run into please let me know. I do the shot for her but I first put an ice pack on the area for ten minutes . It helps with the pain and bruising. Thanks James and Lois 12. Randi Rivenbark June 4, 2018, 7:15 pm I took Forteo for the 2 year course after breaking my hip in 2 places and having osteoporotic fractures on each side of the scrum and at lumbar 3. Over the 2 years, my bone density improved, back pain diminished and general strength improved. I had no side effects. I’m grateful to have been able to use this drug. I could not tolerate any of the oral drugs. They burned up my throat and stomach. I was very hesitant about starting Prolia. I’ve been on it a year and a half now. In the beginning, I had a return of some back pain but it has disappeared again. I think I’m experiencing some side effects which I’ll discuss with my doctor. I’m more concerned with the “rebound fracture” stories I’m seeing when one quits taking Prolia. I don’t think I would have started it if I had known about that. I feel like I’m caught between a rock and a hard place. I never want to go through the pain I endured with a double fractured hip and possibility of never walking unassisted again, though. I would take Forteo again if it was approved for longer use. 13. Chloé May 15, 2018, 8:38 am Hi my name is Chloé , I’m 18 years old and I was diagnosed with idiopathic juvenile osteoporosis when I was 10 years old after having 5 fractures on my spine. The doctors told me that it would all go away after I was finished puberty but since then I have always had bad back pain , a fractured wrist and now recently 4 new fractures. My bone density is completely normal but the doctors are unsure as to why I have more fractures. He has put me on forteo which I will start sometime next week. According to the doctor , he has never known of a girl my age to take this injection. I just wanted to find out if anyone has experienced rapid weight gain ? I have read a few articles and I’m just wondering if any of you have experienced the same ? • Katz October 24, 2018, 12:31 pm Hi. I took it for 2 years. No side effects or weight gain. I think I felt something after the first one or 2 injections. Like a tingling up my hip/leg. But that was it. I no longer have osteoporsis. The problem with Forteo is you can only take it for 2 years. Good luck to you! • Fred July 5, 2018, 10:01 pm Hi Chloe, I’ve been using Forteo for a year and half, and have had no weight gain. I don’t believe rapid weight gain is one of the side effects of the drug, so I don’t believe you have anything to worry about on that aspect. But you can verify with your doctor to be sure. 14. BRENDA March 14, 2018, 3:43 pm I am a 67 year old female. I cannot take Boniva or Fosamax because it causes lesions in my esophagus. I took reclast for 7 years with no problem. They said I could not take it anymore and I started on forteo. I took it for 3 weeks and I started hurting all over my ankles my wrist my neck my knees everything hurt. My primary care doctor said he had had quite a few people with this complaint. I quit taking it because I could not stand the pain and I am not taking anything right now. Since quitting it I ache 10 times more than I did before I took it and I will never ever ever take it again. • Brenda March 27, 2018, 11:52 pm I took Forteo 20 some years ago for a year. I am 76 years old and have been diagnosed with lymphoma. I would like to know if there is a correlation with my cancer and Forteo. Does anyone have info on this? • Jean August 11, 2019, 8:11 pm My husband has lymphoma and never took Forteo. There are no srudies showing any relation to Forteo. Many of us starting Forteo want to know, did it increase your bone density? Did you have to take other drugs afterward to maintain bone density? Wer you able to maintain any gains? So sorry you have yet another health challenge. 15. Barbara March 6, 2018, 1:02 am Took forteo for just 14 days, had severe knee pain and thumb joint pain. The thumb pain subsided and the right knee did as well. My left knee is still severely painful. I cannot bend my knee or straighten my leg out. Saw my primary and endocrinologist, I am officially off. I would never ever take this drug. It might be made for football players trying to take care of fractures to get back out on the football field, it is not meant for frail women with osteoporosis. My Dr.’s are at UCSF, SanFrancisco and I am very disappointed that they ever even tried to get me on this drug. If it could make me almost unable to walk in just 14 days what would it do had I stayed on it 2 years? • Linda Lewis-Snow October 15, 2018, 10:41 am Your story sounds like mine. I took Forteo for only 2 weeks and am now having pain and swelling in my ankles, feet, legs and thumb joint. Worse on the right side and I thought for sure I had a FX in my foot but after an x-ray and am MRI only showed swelling and no FX. So frustrating! 16. Susan February 21, 2018, 8:12 am Anything beats the fractures. 48 yrs old T9, two years later L4…total blow out – not even 50% of the vertebra is left. Last fall at 54 my T12. All non traumatic fractures. I have Systemic Mastocytosis and one of the many side affects is osteo. I am three months on Forteo, three month off but on Alendronate Sodium for the next 3 months.. I will alternate these two drugs every three months for 4 years. So far I have had 3 months of Forteo and a couple weeks for Alendornate, Forth month of this treatment. Already showing bone improvement. No real bad side effects just light headed sometimes after injection. I think it is worth the risk… um 54 years old, bone cancer vs. wheel chair and or paralysis from a back fracture. What choice do I have? • Doreen April 22, 2019, 1:44 pm I depleted all of my vitamin D and calcium for years and as a result now have osteoporosis, osteoarthritis, osteomylacia I had 2 back surgeries the first one involved a clamp it broke , the second one involved 6 screws and a plate all 6 screws became so loose the surgeon could remove them by hand the third surgery which is most recent was to replace the loose screws and plate. I started Forteo about 1year ago since then I have gained 30 lbs, I have daily sweats and all over body bone pain the only reason I’m still taking it is because I haven’t fused yet from most recent surgery but once I do I’m going off of it I hate it good luck • Doreen April 22, 2019, 1:43 pm I depleted all of my vitamin D and calcium for years and as a result now have osteoporosis, osteoarthritis, osteomylacia I had 2 back surgeries the first one involved a clamp it broke , the second one involved 6 screws and a plate all 6 screws became so loose the surgeon could remove them by hand the third surgery which is most recent was to replace the loose screws and plate. I started Forteo about 1year ago since then I have gained 30 lbs, I have daily sweats and all over body bone pain the only reason I’m still taking it is because I haven’t fused yet from most recent surgery but once I do I’m going off of it I hate it • Patsy kelley July 29, 2018, 11:52 am Hi Susan, I have been taking Forteo about a yr now, and I don’t feel as if it is helping. I have a severe case of ostoporosis and I stay in pain 24 hours aday,so tell me how did you know your bones improved in 3 months,I ask this so I can tell my Doctor I don’t think this Forteo is working for me.Reply plz. • Katz October 24, 2018, 12:35 pm You should be able to request a bone density scan after one year. I did this & it was working so I continued another year • F. Mc. July 5, 2018, 10:07 pm Hi Susan, It is great to hear that you are already showing bone improvement after 3 months on Forteo. I am curious — how were you able to tell that you have the bone improvement? I thought that Dexa scans couldn’t tell that soon after the treatment started, so they usually waited until the end of the 2 year treatment. Did you do a scan after the three months? Nice to hear that you are getting the results. • Sal March 7, 2018, 6:55 pm I am so sorry. I am on my 3rd VCF at age 55 (mitochondrial disorder). Thank you for the post on alternating Forteo; a good idea. I have also seen research on using Forteo with Prolia, but I can only imagine it would be really hard on our already stressed bodies. Try to hang in there. it is difficult 17. Kathryn January 31, 2018, 12:22 pm I was prescribed Forteo. Took it for 2 years. I had no side effects but a year into it I did suffer a TPF (tibial plateau fracture). I previously had broken my hip which is why it was prescribed. Last week I had a DEXA and I got a call from my Drs office yesterday that shows bone loss in my “good” hip, as well as my lumbar spine. Dr wants me to come in for the 2x annual shot of Prolia. I do have a strong family history of Osteoporosis, my Mother, maternal Grandmother and my maternal Great Grandmother all suffered from it. I am wondering if anyone else has taken the Forteo then took Prolia? Thanks! • Shelley July 1, 2018, 8:54 pm I took Forteo for 6 months and had to stop because of severe side effects including jaw pain, joint pain, flu like symptoms, pain in site area of injections I really tried to stay on it as I have -3.9 Dexa score in my low back and have done all the other meds with side effects for all . Took Prolia one injection and felt like poison in my system. Had severe skin peeling and wounds on feet and neuralgias and since it was in my system for over 6 months I suffered from severe side effects which changed my quality of life Now my numbers have gone down again and I have to go back on either Prolia (which I flatly deny to do) or Forteo which is like poison to me as well. Still pondering what the next step is as I do not wish my quality of life to be afffected when I actually feel great but my risk for fracture is highy. Ugh. Going for another opinion. Thymlos was recommened but that has horrible side effects as well. • Michaelle March 12, 2018, 10:45 pm I took forteo for 2 years. I have been taking the prolia shots for 2 years. My dexa scan showed significant bone loss in my back and hips. Looking at possibly going back on forteo 18. lorraine January 18, 2018, 6:09 am Started taking foresto 11weeks ago each day after taking the injection I have blurred vision nausea and feel a bit confused this can last up to 4 hours not very pleasant.. I am putting up with it hoping that these side effects will disappear. I must say reading these posts have not helped at all. • Emily Newell March 7, 2018, 2:27 pm The first shot I took was in the doctor’s office. I felt the effects within 10 minutes and it was like you kind of light-headed and all that, so I take it at night before I go to sleep. After the second shot I could tell a difference I feel stronger. • marcy December 30, 2018, 11:08 am Has anyone out there ever had bone spurs after completing forteo 19. Sharon Pyne January 3, 2018, 10:11 am so glad to find this site. I was prescribed Forteo 10 years ago because of very low bone density. I was only 50 and had never had a fracture. I had taken actenel for two years in my 40s with no positive results so I was not about to take this scary new drug. Since age 50, my bone density fell another 10 percent but I still have not broken a bone. I am considering taking the drug since I am in the highest risk group due to my DEXA scan. I have started weight lifting and continue my three mile walk/run as I have been doing since I was 20. I have also started taking algae cal. I understand that it might be the responsible thing to take Forteo. My mother did take it 15 years ago and she stopped breaking bones. She has also at 85, developed a slow growing leukemia which I fear may be connected with forteo. This is such a challenging position to be in…and I have spent way to much time weighing the decision whether to take Forteo or not. So glad to read all of your experiences. Thanks • DD January 4, 2018, 6:02 pm Hi, Sharon. Read the book “The Myth of Osteoporosis” by Gillian Sanson. You will find some very helpful information, particularly the information regarding DEXA scans. I’m terrified of taking any of these medications due to my mother’s experience using biphosphates. My mother had horrible problems on biphosphates. She had compression fractures of the spine WHILE taking them, teeth falling out, weight gain, very bad stomach and esophageal problems. Now her new endocrinologist wants her to use Forteo. The doctors and scientific community can’t explain how this drug works. Why risk cancer if you only have a 20% chance of breaking a bone in the next ten years? These drugs stay in your body for years after you stop taking them. Pretty scary stuff. Read the book. It will give you a good perspective. 20. Jon age 69 December 20, 2017, 4:06 am I was prescribed Forteo today and will start injections in a few weeks, after my surgery and after my insurance preapproves it. But first I would like to comment on the clever article above. I hope that no one takes the article seriously. It is full of innuendo and is quite misleading. Up until recently Forteo was the only drug (or treatment of any kind) which consistently demonstrated an increase in bone density; now there is a second drug. Forteo is limited to a 2 year regimen because no studies have yer been completed which show the potential risks of taking it longer. Use your head! Osteoporosis is a strange disease and taking anything which messes with you calcium chemistry and bone absorption rates is bound to have an effect on other uses of calcium in your body, like muscle cramps, kidney stones (both of which I have), etc. Get educated from rational, honest and well documented sources before making non-emotional decisions. They’re your failing bones, your painful side effects, and your quality of life. Get serious, do your homework, and if you’re like me then go to God and seek confirmation of your decisions. You’ll do much better that way than reading tripe like the article above. Now on to my situation – hopefully it may prove useful to someone. I have a history of a few dozen orthopaedic surgeries. I have 3 fused vertebrae in my neck and a total knee replacement, both of which may have been the result of high school and college track. I also have a long history of sinusitis and asthma with a corresponding 40+ year history of prednisone use which led to idiopathic osteonecrosis (they couldn’t prove it was caused by the prednisone but it was) which provided me with a total hip replacement on the left and a close call on the right hip (doctors can and do accomplish amazing things). Then my vertebrae started going, starting with the fusion of C7-6-5, then L5-4, then added S1-L5 and L4-3. That was two years ago. This lead to spine instability requiring the fusion of L2-1-T12-11-10, probably plus the remaining vertebrae below S1 to tie the whole stack to the pelvise. This will happen in two weeks. During this last spine issue the surgeon noticed that the vertebra right above the current lumbar fusion seemed to have collapsed a bit so he ordered a bone density scan. That’s how the osteoporosis was discovered. He thinks it’s primarily caused by genetics (my maternal grandmother had serious osteoporosis). I think the long term heavy prednisone use which gave me a new hip also played a role, but obviously I can’t prove that. At -2.5 my T level is right on the edge of my surgeon feeling confident that the addition 12 or so screws in my spine will hold. I really don’t have the time to wait for the surgery because of the pain the spinal instability causes. As mentioned above my surgeon also prescribed Forteo to increase the spinal bone density so that no additional vertebrae will collapse, thereby messing with the fusion rather severely. Both my wife and I have done a goodly amount of research (and will continue to do so). My current findings: I’m not a rat. Because I have no history of bone cancer my risk of osteosarcoma is no different than that of someone who is not taking Forteo. Since I have had several kidney stones and because Forteo messes with blood calcium levels I expect to have an increase in kidney stones. Because I take calcium to prevent leg cramps and because Forteo once again messes with blood calcium levels I expect to have cramping issues. Because I have some joint pain I would not be surprised to see an increase. Note that just because I am preparing myself for these known side effects it doesn’t mean I will have them. But if I do I will not be surprised. We are researching solutions to these issues so that I can, along with the advise of my surgeon, do my best to mitigate them. But I must keep in mind my twofold goal: (1) my rather long fusion will not only not fail, but no other vertebrae will join the long fusion (pelvis to T10); (2) my -2.5 T value will rise and I will have no other issues related to the osteoporosis I *used* to have. Both of those goals are worth all the efforts my wife, my doctors, my God and I can invest to accomplish this outcome. But it doesn’t come for free. It takes effort and possibly courage, along with an amp,e dies of faith. • Jackie September 13, 2018, 11:02 pm So glad I came across your comment, I will hopefully soon be on forteo, I have 3 vertebrae with compression fractures that occurred out of the blue, finally after 4 months of pain I was sent for dexa scan and bone density scan, and surprise I’ve got osteoporosis, my doctor said the best drug for me would be forteo and after reading some of these co.ments it was scary, so thank you for putting things in perspective! • Joni March 19, 2018, 1:30 am Jon Thank you for your honesty I too have been prescribed Forteo. My T score Is -2.7., But my doctors have admitted it is due to long term 20+ years of prednisone use for my asthma. 5 months ago my L3 vertebrae exploded ( Docs wording,not mine) so now the endocrinologist wants me on the Forteo for 2 years and then after that probably back to the fosamax. As explained to me Forteo is a bone builder and Fosamax is a bone stabilizer. I will be goi g in tomorrow for a Kyphoplasty to repair/ stabilize the L3 vertebrae. I am in the medical field and at 57 hoping to be able to work for 5 more years til retirement. I agree with you Jon, I listen to my doctors, do my research and then put the rest in the hands of God. He made me, he can certainly heal me That is how I choose to go head on with this venture. • Molly March 16, 2018, 8:05 pm I am wondering about taking Forteo?? I am in Mpls, Mn, so my top Doc.a back & brain surgeon wants me to take Forteo for 6 weeks before he wil do surgery on my back on L4-L5. L5 is completely crushed, wants to put screws in??? Other stuf too??? I am 80, have been bed ridden for almost 5 months, taking pain pills, can only walk to bathroom, doc’s with help of cane, wheelchair, etc. Been reading these other peoples comments. SCARY!! I have been in so much pain. Osteoporosis bad. Have any suggestions???? Molly • Rosemary Salerno May 4, 2018, 9:18 pm I would not take this stuff research it is some scary medicine no thks • Emily Newell March 7, 2018, 2:51 pm I started on forteo last week. The first shot in the doctor’s office . I took the second one at night (bc of side effects) . The next morning I could tell a difference; I felt stronger. I don’t know if I’ll take it for 6 months. It depends on if the side effects don’t get any worse. btw I’m 55 and was struck by a car when I was 19 years old. • Emily Newell March 7, 2018, 2:54 pm I forgot to say in the south they don’t have much selenium in the soil. Another place you can get selenium is in mustard. It’s in mustard seeds. • DD January 4, 2018, 6:09 pm Hi, Jon. Look into magnesium. It may help out the cramping and kidney stone issues. It helps direct calcium where it’s supposed to go. The book “The Magnesium Miracle” by Dr. Carolyn Dean. It really helped me. Take care. 21. Deborah Creel December 6, 2017, 11:31 pm I have been off For two for a year now. I developed the worst cramps in my legs and feet ever. Sometimes they they were stiff and cramped for up to 5 hours with no relief. I did take it for 20 months when the cramp became unbearable. At that point my Dr.had me stop. The bone density tests would show an improvement in some areas but worse in others. I think it was taking bone from one area and putting it in another area. • Rosemary Salernoout of 50 May 4, 2018, 9:21 pm Out of 50 reviews I seen 2 good outcomes I will never take this • JAMES MEYER August 10, 2018, 10:05 am But did you keep you calcium levels up and eat plenty foods rich in vitamin K and take Vitamin D daily and Selenium and exercise daily and walk 30 minutes a day? Just Currious about more details 22. Marcia Shaheen December 4, 2017, 8:23 pm Hi: I’m new to Forteo but have a paranoia about manufacturers. Do any of you know if Lily is the only manufacturer of this drug? I hope so! After doing much research on the horror stories of Chinese and Indian companies I will not buy from them. Thanks for any reply, Mush Mouse • Beulah Brown January 4, 2018, 6:34 pm Lily is listed as the manufacturer on my Forteo Box… • Susan Rudd March 8, 2018, 12:46 am Lily is listed on my Forteo box also. I just took my first injection tonight. I have to say after reading all of these comments, I am terrified! • Jeanette Andrews March 16, 2018, 12:17 pm I have been on for two for 18 months because a simple sneeze fractured two of my thoracic vertebrae. After my first injection I thought my body was on fire but it subsided in a minute, no side effects since then, no fractures since I started the for two, wish I could keep taking it when my two years are up, I am feeling great compared to how I felt before the for two 23. Ramona December 4, 2017, 6:16 pm I just completed my first year of Forteo. I have had zero side effects. I HAVE had great improvement in all bone-building indicators via blood tests (PINP, e.g.) with the real life confirmation that it is working: I can now bend over, wash my big dog, run (!), and live normally again without sacral pain. Forteo has a remarkable safety record over the 15 years of its use in the U.S. It is the ONLY anabolic (builds natural, real bone) osteoporosis drug (OK, now a new, very similar one – Tymlos is its competitor) available. Do not be afraid. It will heal your bones. • Baxter July 14, 2019, 8:24 pm I have been on Forteo for 3 months. I have had no side effects that I know of. Reading all these awful reviews makes me want to quit taking it! Please people, if you have positive results…let us know! It’s scary reading so many negatives. • Sue February 13, 2018, 2:46 pm It is good to read your comment, Ramona. It gives me hope, as I am just beginning Forteo and read a lot of negative remarks. I already have concerns about it working as well as the side effects. I’ve only injected for 2 days and hoping I will be free of terrible side effects. I am also hoping to significantly increase my bone density, but who knows?! We don’t have a crystal ball for these things. • Judy February 9, 2018, 3:58 pm Happy to read this Ramona. I was terrified with some of the comments. Did you gain weight? Thanks • Ramona May 17, 2018, 10:27 am Hi Judy, If I gained any weight it was from too many desserts. I did lose about 30 pounds in the last 10 months by exercise and cutting down carbs. • JAMES MEYER August 9, 2018, 11:03 pm Hi Ramona, Glad to hear something positive on this board. My wife Lois 65 has osteo and is starting Forteo. First week . She works out at Dynamic Gym and eats right food and supplements. I hope for you and her to be cured or at least improved>> James and Lois 24. Kate November 30, 2017, 5:04 pm I took Forteo for one year, felt lousy first couple months, then moved onto to torturous cramping of almost any muscle you can think of! While my spine bd did improve a little, my insurance no longer covers the drug. I’m not heartbroken. Was always a little concerned about what I was doing. Always wondered why the drug company took such an interest in me, calling monthly…. why? Have been off forteo about 3.5 months and experiencing terrible joint pain. Could it be related? Also still afflicted with horrendous cramping. • Rosemary Salerno May 4, 2018, 9:25 pm They call cuz this medicine is 3 500 a month 25. Amy V. November 7, 2017, 9:52 pm I’m 11 weeks into recovering from atypical femur fracture AND necrotic bone tissue in the jaw – both ‘rare’ side effects from years of Fosomax and Prolia. I’m 58 years old and was diagnosed with osteoporosis in my late 30’s. I have a strong family history through my mother, and maternal grandmother and grandfather. My rheumatologist wants me to go to Forteo next. I have finally gotten my migraines/vertigo/fibromyalgia (thank you menopause) under control. I’m thinking that the last thing I need it to deal with is some of the side effects of this drug. Not sure as to what’s next. • marilyn Salerno April 21, 2018, 6:16 pm To Amy V Just diagnosed with incomplete atypical femur fracture following use of bisphosphnates (Fosamax). Currently on limited weight bearing for 6 to 8 weeks to see if heals on its own. My orthopedist hoping to get me a bone stimulator. I have been reading about Forteo and have 2 friends with osteoporosis who have had positive results and I am therefore hoping to see a Rheumatologist to see if I would be a good candidate for Forteo. Wondering if you ever took the Forteo and what your experience has been. I really would like to avoid surgery. Any info would be appreciated. • Cindy mauldin January 12, 2018, 11:27 am I had a broken arm that would not heal, however I also had cirrhosis. By my 2ND shot I had swollen up, looking9 months pregnant. And was told to continue it. Which I didn’t. FROM that point on I got worse and almost died. The drs. Gave me less than 24 hrs. Thanks to god and a healer I made it. The hospital still calls me the miracle women. I’d never take it again. • Mary December 10, 2017, 5:42 am I too have atypical stress femur fractures and am high risk for jaw problems. My doctors want me to take forteo. I have been resisting their advice. I have a history of radiation therapy for breast cancer 20 years ago. I do not know what to do. I am afraid of this drug but feel I have no choice if I want to solve my bone problems. This is a horrible decision to have to make. • Amy V. December 14, 2017, 8:18 pm My rheumatologist is REALLY pushing the forteo. I’m still holding off. She says that the bone tumors were only in baby mice, no evidence in humans. But the stories of the cramping are also scary. Recovering from the broken femur was painful enough. There was so much cramping in the recovery from the surgery site – having had to cut into muscle. It is a terrible decision. Then what to do after 2 years when having to go off forteo? • lucky1038 March 4, 2019, 7:16 am re forteo — no one knows how forteo works. so do your own research while contemplating using forteo. one dr practically pushed it on me — and somehow a pharmacy called which said they would mail it to me. i did not like the feeling of having forteo pushed on me. and no doctor knows how it works. 26. Windy November 5, 2017, 9:22 am Son completed 2 years on Fortoe at age 19 due to rare bone disease. Had been on Fosamax since age 12 when a fall resulted in a hip fracture. Hip was replaced at age 17 due to necrosis. Major time spent in reading all known about these drugs and visits w/best MD’s in country before making such a decision for a child. (He also is on Autism Spectrum so impossible to complete change of diet/exercise and giving supplements/total change of life style were out). It’s truly scary to use these drugs no matter what age.. He does continue with joint pain off and on. He lost hair/what is left is fragile. Remain grateful as bone density did increase. Will forever be on look out for long term/unknown side effects of this drug… 27. DiAnn November 4, 2017, 11:24 am This drug was recommented to me as my only choice given my level of bone density. I have been on Forteo for about 15 months and my insurance will not approve a bone density evaluation for 5 more months. I have opted to pay for the out of pocket cost for the test simply for piece of mind this month. It should reveal if improvements have been made or not and therefore if I should continue. If there is not comparative improvements from last scan, I have been on Forteo for about 15 months and my insurance will not approve a bone density evaluation for 5 more months. I have opted to pay for the out of pocket cost for the test simply for piece of mind this month. It should reveal if improvements have been made or not and therefore if I should continue. If there is not comparative improvementn from last scan, I will switch to another med with less risk. It is worth the out of pocket cost to fend off the potential risk, in my opinion.I will switch to another med with less risk. It is worth the out of pocket cost to fend off the potential risk, in my opinion. 28. Amy October 19, 2017, 10:59 pm 46 year old female. Started injections today. Have osteoporosis from Steroid use to treat sarcoidosis. Will be watching the thread. A little nervous. • Cathy January 14, 2018, 1:43 pm I am on my last month of Forteo. I fought using this or any drug…definitely not the Fosomax or Boniva products. I take organic calcium, D vitamin…..I do weights and aerobics as well as get my walking in. My doctor, after much discussion, convinced me that this was the right move for me. So I am completing the 2 years this month. I have no side effects and can only hope it has improved my density….I did have to have an overactive parathyroid removed about a year and a half ago which improved my readings. This may have been the initial start to my osteoporosis; an over active parathyroid will leach calcium from your bones. So I will keep you posted on how my Dexa scan reads. Going forward I am done with chemicals…I am going to continue my natural calcium, D and other vitamins as well as my exercise program and just enjoy what the Good Lord gives me going forward. 29. beckysue mom of 3 October 9, 2017, 3:13 am Sarcoma incidence? Here is the 7 yr study results…zero. https://www.ncbi.nlm.nih.gov/pubmed/27925287 15 yr study should be done soon • LAW November 16, 2017, 10:18 pm Thank you for the research links! • Help January 18, 2018, 11:07 pm I am trying to find research on #patients who developed osteosarcoma who were taking Fortes – can’t find a thing. Can someone help me? 30. beckysue mom of 3 October 9, 2017, 3:02 am more real research. https://www.ncbi.nlm.nih.gov/pubmed/27925287 31. Laura Nowotny September 7, 2017, 9:32 pm I’m 37 years old and after several unexplained fractures my endocrinologist recommended Forteo. I took it for a week and had bad flu like symptoms so I stopped. She talked me into trying again. I was mostly fine for about two weeks, a little back pain, then one day I felt weak and then I had pain all over my body. I stopped the injections that day but the pain continues. It’s everywhere and sometimes gets so bad that I can barely move and my new pain doctor believes it’s the Forteo and that it may last a long time. • Lainey September 15, 2017, 7:46 pm I too am 37! I just started my forteo 30 min ago and I think I’m dying. It almost immediately started to make my left kidney hurt so bad I’m doubling over and now my right kidney is starting to hurt as well. I am a prolific kidney stone former!! My bone loss is so bad though and I didn’t respond to reclast so bisphosphonates are off the table. This is basically my last chance. I’m on hormone replacement therapy along with it. I have Sjögren’s syndrome and had a radical hysterectomy at 32. BUT I can not take this pain!!!! • Sam Pinterpe September 28, 2017, 7:51 am Can you walk 20-30 minutes daily and take calcium and vitamin D? I would prefer that to Forteo or any other drug. • Jon December 20, 2017, 2:48 am I am always very concerned by people with zero evidence who suggest supposed treatments for extremely serious illnesses based solely upon their prejudice and fears. I have just today been diagnosed with osteoporosis in advance of adding 7 fused vertebrae in addition to my existing 7 fused vertebrae. I will gratefully start Forteo in a few weeks. Would you and others also suggest that I not use Forteo? Will you take on the responsibility for my fusions failing because I walked 20 minutes/day or took calcium (I’ve taken a balanced calcium supplement for years for other reasons) or went on some holistic journey with zero clinical evidence of success, and your advice was seriously flawed? All of the very valid complaints of side effects from Forteo are clearly listed on the drug, were clearly explained by my surgeon, and were found by me in less than 60 seconds using Google. No, you all will not take responsibility for prescribing a treatment to those you do not even now. I will post a full explanation of my conditions below, but here I beg everyone to have compassion for us and only post personal experiences and sources of your information. That is what I plan on doing. If you want to suggest something like holistic medicine then post some evidence. While I strongly support “natural” lifestyles where we try to live in harmony with our bodies and our environments, I have seen too many bad outcomes, including deaths, because people, based upon fear and desperation, take some idiotic advice. And the person who gave this advice just moves on without regard to the consequences they inflicted (if they even followed up with the person – they normally don’t or can’t because they really don’t know the victim of their hubris). • Rose September 27, 2017, 12:11 pm You ought to turn to natural holistic medicine instead, you will heal naturally! • Rosemary October 1, 2017, 12:19 pm I would like to go holistic also. I am hesitant to take anymore drugs. I’ve been on Fosomax, Evista, Prolia, and several others. After an L1 compression fracture, my doctor now wants me to take Fosteo daily injections. I do not want to do this. Do you know anything about Vital Proteins Beef Collagen? I called them and this protein is cooked for 48 hours to make what becomes a powder which one adds to a hot drink. The cow bones are checked for heavy metal, hormones, antibiotics, and pesticides. It sounds safe, but are you aware of any research that proves it affective? Thank you. 32. HJ Wynn August 5, 2017, 7:35 pm Facts: Two major fractures in my back L1 fracture 2003 from an accident curved my spine 37 degrees over the years Bones below the fracture were crumbling Doctor started me on Forteo Never felt one side affect. NEVER from the injection and medication Energy level quadrupled …. and then some 18 Months into Forteo the decision to operate on my curved back was made Massive surgery was preformed T10 – L4 w/ Robotics and my Surgeon skill Post Surgery Only muscle readjustment discomfort and incision healing No pain at all in my back Decision to continue Foreto for the full 24 month was made Continuing FORTEO at this writing with NO side affects NO pain NO pills for pain Forteo may have side affects for some but my attitude WAS and REMAINS that this MEDICATION has allowed me to be better than what I was ……and I am forever thankful for the past months of being able to walk again. • Rosemary Salerno May 4, 2018, 9:32 pm Glad it worked for you • Jon November 3, 2017, 5:47 pm I would like to hear more from HJWynn. My surgeon wants me to take Forteo but Endocrinologist does not want to give me Forteo, but Reclast. I don’t want to waste time taking Reclast if he wants me to take Forteo. Your story sounds similar to mine. Back fracture, constant pain, severe adult scoliosis. Surgeon wants to operate to fix back but wants my bones strong first. Would like to hear how you are doing and how I find a doctor who will give me Forteo. • SSP November 15, 2017, 8:43 pm A year ago I received a single Reclast infusion. The following day I was in such severe total body pain I couldn’t move. My husband called the prescribing doctor and told them that all through chemo (2012) he never saw me as bad as I was with the Reclast. After about 4 weeks the total body pain subsided, but I was unable to drive for three months, due to the severe pain whenever I turned my head. Now it’s time to do something else for the osteoporosis. Dr has suggested Forteo for 2 years, and then Prolia every 6 months into perpetuity. I’m afraid to inject anything else, due to the reaction I had to Reclast. Anyone else know about potential side effects with Forteo? Also, with a Medadvantage plan, what is the out of pocket costs for this drug. Over 3k seems a little steep, but how much does the Medadv plan cover? • Robert Grew December 25, 2018, 12:03 pm I don’t know of your age nor financial status, however if you fall below a certain financial level you may apply to the Lilly Foundation and receive your Forteo for free. Your physician should have the documents for applying for such aid. • Joy imran April 19, 2018, 8:39 pm I have taken reclast for the past 3 years never had any side effects whatsoever make sure I’m well hydrated before I go in and well hydrated the whole day and the day before after taking the medication. Problem with reclass it does not rebuild your bone it just mean things you the Way You Are and if you fracture something is more difficult for you to heal while taking reclast. I will now be starting on forteo I hope this will improve my bone density and my quality of life • Lori L Deal January 13, 2018, 10:25 am I am about to start Forteo. I broke the Tibia in my knee and am still on crutches. There is a huge genetic component for me. I remember all the way back to my great grandmother how she was bent over looking at the ground with a dowager hump. I have had Osteoporosis for many years and did hormone teplacement and fosamax for a while. Now at 60 the doctor says I am high risk for fractures as my osteoporosis has gotten worse.I have Kaiser and the forteo would be$200/month co-pay. I called Ellu Lilly the manufacturer of Forteo.They have several programs. One for medical,medicare at no cost. Another called Forteo connect for $4/ m for forteo. Go to http://www.forteo.com, menu, services and priducts. Click on get forteo for$4. I simply answered 2 question, then my name and email. They will get back to me in two days and I will print a card to take to a pharmacy. . I do not know if my medical will accept the card or if I need to go to a regular pharmacy.I am willing to take the risks for forteo. I have had too many falls lately. I will update when I get the card and how I am doing on forteo.

• Cathey August 12, 2018, 7:52 pm

Forteo is expensive but hold out until your Dr. and or Insurance Co. can possibly work out a cost you are comfortable with. When I started on Forteo they wanted something like $1,400 a month for it, but I held out until we got it down to like$35. a month. An acqaintance recently started it at $0.00 a month so there is help out there. 33. Terri July 19, 2017, 11:10 am I am using Forteo to build up bone to prepare for a complete lumbar fusion. The doctors wanted fast reacting so they could do the surgery within three months. The side effect I have is severe pain in my thighs up to my hips. Because I want this surgery for pain relief I’ll put up with it for three months. I have fibromyalgia as well so I have very sensitive nerves which multiply the pain sensation. But man it hurts hopefully it will go away soon. 34. Sam Pinterpe July 10, 2017, 2:37 pm The daily injections are not a problem. The 31g needle is so thin that I never felt it go in. Also, not knowing exactly how a drug works is not a problem. We used opioids for years without known exactly how they worked. The problem for me was the flu like symptoms (dizziness, fatigue, muscle pain) that I experienced after my 2nd injection. I am not sure if I’ll restart the injections. • Amy Smith September 8, 2017, 10:36 pm The exact same thing happened to me. I took 2 shots ,3 weeks ago. The dizziness finally went away but I have severe pain in my legs and hips. I wil not continue and pray this pain goes away! 35. DS July 6, 2017, 12:16 pm The premise of this article is Forteo should not be a treatment option because bisphosphonates are available. There is no convincing research that definitively shows bisphosphonates significantly reduce fracture rate. I don’t care if my bone density improves if my fracture rate doesn’t. And they have bad side effects, too. They stay in your system long-term and 1 side effect is an awful, strange thigh fracture that is not easily treated. So what if the cost is less if I end up paying for no value and pay the cost of more fractures? If I continue having to deal with my fractures then, yes, I will risk the odds of cancer. What good is my life with broken hips and spine, etc? Spend some time with someone who experiences these problems before rushing to judgment. 36. Lorraine S. June 24, 2017, 11:30 pm That is encouraging news. I have been spending a lot of time researching options. Has your doctor recommended that you go on Reclast or Prolia? • June June 25, 2017, 11:52 am I will report back on what my next treatment might be AFTER the BDS… It may be a couple of weeks before I’ve had my scan and seen my Doctor again. On our initial consultation, he mistakenly told me that I can do Forteo again, but I don’t think that’s true. I definitely plan to continue with the Power Plate and the strength training, hopefully actually doing both every day/3 x a week. 37. June June 24, 2017, 7:17 pm I guess I was incredibly lucky!! I had my bone density scan about 6 years ago and was diagnosed with Osteoporosis. I faithfully gave myself the daily shots for 2 years. I had NO SIDE EFFECTS. At the end of 2 years, my new BDS showed that I had successfully REVERSED Osteoporosis back to Osteopenia. I felt great, I was so happy my Dr. prescribed Forteo for me. Now, 6 years later, I sometimes feel pain in my lower back and hips. I am going to have another BDS soon, and was hoping I could do Forteo again, but I have read here that it is not safe to use for more than 2 years. I know there are other things that help, and one is strength training. I do about an hour at a gym 3 x a week and I definitely feel less pain after I work out, especially if I can work out regularly, with weighted machines. The other thing that I know will help if I do it regularly is a machine called PowerPlate. This was developed for astronauts who lost bone density while in space and used the high vibration machine (standing on it for 10 minutes a day to increase their bone density. I believe that will work if it is done regularly. I’m not sure that calcium and vitamin D will work, I use both but not regularly enough. My mother had osteoporosis and fractures in the spine that caused her pain the last years of her life. My grandmother had such a bad case of osteoporosis that she had a severe hunchback in her last years. I am 67 years old, and thinking ahead to the future. • Suzanne October 17, 2017, 8:44 am I was happy to read something positive about Forteo.Im 57 and I had my first scan 5 yrs ago. At that time I was diagnosed with osteopenia and started on Alendronate sodium. After 5 yrs, it decided not to work for me anymore and I now have osteoporosis. So Im trying Forteo. Im not thrilled about it and Im nervous about the major side effects,but I decided to give it a go. I been taking it for 2 months with no side effects so far. I dont feel any different . I have no problem injecting myself. Just no issues at all. It is interesting to read other peoples experiences. Thank you. 38. LaLa June 23, 2017, 5:58 pm I’ve been reading comments with interest. I have had osteopenia for at least 15 years. I took Actonel/Bonita for about 10 years until my PCP said I was doing more harm than good. Since my first Dexa 15 years ago, I’ve been fairly stable – average measurements about -1.5, up and down a few tenths over the years. A few years ago, I was diagnosed with low Vitamin D, took the therapeutic amount and continue to take 2000 in daily. My count is still on the low side, in the 30’s but my PCP seems to be happy. My mother lived to be 96 and she lost four inches in height due to osteoporosis. Recently I had a failed cervical fusion, and my surgeon said he thought that my bones were a little “soft.” My insurance company approved it, and they are supposedly sending it to me. My questions: Is it appropriate to take Forteo for stable osteopenia? Does a failed fusion justify forteo? Should I consult with an endocrinologist before I start this? My husband and I travel extensively internationally, and I can’t see how I’m going to pull this off. Thanks in advance for any input. • beckysue mom of 3 October 8, 2017, 9:04 pm I am 63..widow.. and have had osteopenia then osteoporosis for 15 plus years. only exercise, minerals..strontium citrate in am and calcium at night. very fit. I tripped and crushed shoulder. Total reverse shoulder replacement. Started Forteo a few weeks ago 6 weeks after joint replace. happiness ended. flu symptoms everyday. It all changed. Life so unenjoyable and dark. dont know what to do. Keep fighting? I cant keep imposing my helplessness from bone breaks on my family. Cannot drive for a while yet, cannot do my own beautiful long blonde hair with one hand. many months of rehab. horrified to hear of unknown effects of forteo…Which oncologists will report previous forteo use by their osteosarcoma patients? Who tracks these dangerous side effects? I fear stomach side effects from bisphosphonates? so hopeless. • LaLa June 23, 2017, 6:00 pm Forgot to say that I’m female, athletic, 72 and really healthy. 39. Mechinu May 19, 2017, 3:00 am Maybe you won’t have any affects if you don’t read this article. İt’s true that if you believe something will make you sad it will make you sad. İf your doctors insistly asked you to use this injection even it has side affects, you have to use it you have no chance. You have to give it a try. Don’t worry and believe that you will be ok. But while you are using this med for at most 18 months, you must take enough calcium from cheese and yoghurt everyday and eceryday you must lie under sun light 15-30 minutes during the afternoon for vitamin D to make strong bones together with calcium. İf you don’t do that bone constructer forteo won’t have any good affect. Because it makes bone using calcium and Vit D, if you don’t have calcium it won’t make bone. Listen to me I am giving you the solution. • Susan June 19, 2017, 10:55 am I am 65 year old female and started taking Forteo at age 63 do to a low bone density and family history of osteoporosis. I had very painful side effects in most of my joints and muscles. I stopped taking it after 3 months and the pain went away after several more months. Two years down the road, and not on any medications, the same pains have returned and have persisted for the last 5 months. The pain is especially bad once I lay down at night. Today I can not lift my arm over my shoulder, my thumb is so painful I can not write a grocery list and, after hiking 5,000 foot mountains just 6 months ago, I need assistance to get in or out of bed. I have tested negative for bone cancer and Lyme disease. Rheumatoid arthritis has been ruled out but without conclusive testing. Has anyone had the side effects return? Did something trigger them? Have they gone away and how long did they last? Thoughts? No diagnosis at this point. More Dr. appointments scheduled. Thank you! PS I was very active walking, hiking, kayaking and biking …and took the injections as preventative measure due to family history. • Susan you might go to rheumatologist at a medical university... I have dermatamyosistis and the symptoms you are describing sounds hlike it or polymyosistis June 23, 2017, 11:21 pm Susan you might go to university Medical School in your state …. to the rheumatology department and get tested for dermatamyosistis or polymyositis… I have dermatamyosistis and the symptoms you are describing sounds like mine… It is an autoimmune desease that attacks your muscles • Mechinu May 19, 2017, 3:10 pm But I am worried about what will happen after using this 1,5 years later? Is its affect permament. As you know it can be used only for 1,5 years. And if you can’t make bone without it so how will you make bone the rest of the years? 40. Donna May 13, 2017, 9:19 pm Started Forteo on March 17, some irregular and fast heart rate and developing high blood pressure 140/90. Anyone else? • JJ May 14, 2017, 12:48 am I got fast heart rate for 2 hours after each shot. • SS November 9, 2017, 2:49 pm My pressure also went up. I have never had anything than low to normal blood pressure. When I broke my leg, I was in the hospital for two weeks and my pressure was fine. They wanted me on Forteo, which I started and it wasn’t until I went for my three month check after starting the drug, my blood pressure was elevated. Thought is was just “white coat syndrome”. Went to another doctor for another check up and still high. I’m in good shape and exercise everyday. Going to the endocrinologist tomorrow and asking to get off this stuff. I will have been on this for 15 months. There is no way this is just a coincidence. 41. David Vincent April 22, 2017, 12:30 am I’ve been injecting this drug now for almost five weeks. I’ve had no side effects that I’m aware of. About a week ago I had some mild to moderate low back pain for a few days but it went away. I’d like to think that maybe I’m already beginning to form some new bone in my spine. Or it could be I’m just getting old, lol! I don’t think there’s any reason to be afraid of this drug. Now matter how you slice it we’re all going to die anyway, so take the damn drug. • Pandora99 April 29, 2017, 11:01 pm David I agree with you! I am 53 years old and have had a compression fracture of a thoracic vertebrae and have severe osteoporosis. Anyone who minimized the pain, inactivity, and thus related health problems of broken bones need to rethink this. I took bisphophanate for 2 years and my bone density remained the same. Since I am relatively young, I am afraid that I will over the course of the rest of my life at some point incur a major fracture, the hip is the scariest. Once that happens, I will be disabled, unable to work, unable to exercise, will be hospitalized and could possibly end up dying of pneumonia. I already know that I have osteo. It will likely be what kills me if I don’t treat it. The cancer risk is extremely small so I’m going to go with what I know and can treat now so that I can live a full life. • Lori April 30, 2019, 6:14 pm Pandora, I am curious how you made out since it’s been about 2 years since your post. I am in the same boat-had a fusion due to a herniated disc at work and 6 weeks later had a compression fx. just above the fusion. Found out I have severe osteoporosis at age 54. Hoping to get back to work and life! • Carolyn Parkins July 3, 2017, 11:18 am I am 80 years old and have had both hips fractured. One a complete replacement. The replacing has done much better than the repaired hip . I have serious osteoporosis and scoliosis. I exercise,albeit not as much as i used to. I do use a Rolling walker for stably due to curvature of my spine. You do not have to be disabled sue to hip fracture. I just started with the forteo in Feb. The risk of bone cancer, to me, is worth the benefits stronger bones and fewer fractures. Good luck. • Lorraine S June 24, 2017, 1:44 pm Pandora99, How are you doing now? You & David V seem to have the most positive comments on Forteo. I am 61 and recently had x-rays, following a doctor visit on 5/22/17, which showed a compression fracture of T9 and 2 non-displaced rib fractures. I am an active & otherwise healthy person. It was the back pain following a half marathon that brought me to the doctor! Osteoporosis meds are very scary to me but I realize I need to do something in order to stop the fractures. • Carolyn Parkins July 3, 2017, 12:49 pm Don’t know. I will in a years time but I have a lot more energy. Not taking any prescription drugs except go arthritis pain. I’ll take product for the rest of my life if necessary. • Pandora99 April 29, 2017, 11:03 pm p.s. The injections are incredibly painless and simple. This article is nothing but fear mongering. • Dwight Blackwell July 19, 2017, 9:20 am 73 YO farmer. was active. have taken forteo for seven weeks. Am almost invalid now. Going to the Dr. to see if I need to taper off then quit or just cold turkey. Sever fatigue and clumsiness. (bad for a farmer!) Bless all who continue to receive and benefit from Forteo. • IJJ May 14, 2017, 12:56 am I’m glad it’s working for you however not for me. I’ve been sick from the beginning first with breathing, sinus issues. My Dr gave me 3 antibiotic prescriptions within a couple of months. Depression and feeling a sense of emptiness which I’ve never had before but couldn’t figure out why. Always got up early to run, walk or ride bike and lost all energy after taking this drug. Fast heart rate and a few other issues. Now I have blisters on my elbows and finger knuckles. I’m out. Good luck. 42. Koua Y Vang April 13, 2017, 11:21 am My mom is 77 years old and had two fracture discs on her spine. She took dexa scan and blood lap done, doctor said she had low vit D. The doctor can’t even give her a surgery due to her lack of vit D on her bones to help with the recovery process. After the second shot she start to complaining about neck pain , chest pain, weakness on her leg, dizziness, nausea, and other side effects. The last shot she took which has ended her life, she hanged herself about an hour later. Please shared your experiences and other side effects you may have Forteo. Thanks. • Dave April 19, 2017, 12:11 pm April 19,2017 Trying to jump on Forteo train, but just denied coverage by ins co., 57 years old, male, just informed osteo from birth via dexa, broke every major bone 2-3 times in childhood, clean through life till 2016- fractured L-1 through 5 except#2,Kypo on #L-1 1 week ago, if side effects /pain from Forteo are no worse than doing bodywork on cars 10 hrs a day with 4 fractures – then I will somehow pay the$2000-$3000 a month ,otherwise I as a business owner with no employees will have no quality of life, I need Forteo and hope for injections soon. Will update in 4 weeks • John Frykman July 9, 2017, 11:49 am Dave, There are ways to get Forteo without paying$2-$3K month. Are you a vet? If so, you may qualify for VA benefits. I applied for benefits at age 72 and was accepted for free medical care. I have 6 thoracic and 2 lumbar vertebral compression fractures. The VA Endocrinology Clinic in Minneapolis got me approved for Forteo 2 days after applying to the VA pharmacy. I pay$11/month copay… that’s it! Just received my first pen last Friday. I know many physicians get free samples. Also, Lilly has assistance available. If you research the web you will find other affordable options

Good luck!

• Kymberly April 26, 2017, 11:37 am

Hi Dave…I too am on week 5 of Forteo…and feel I’m way too young to be dealing with this disease ..lots of fractures, lots of stories….but back to cost ! It only costs me about $8.25 a month. Talk to your endocrinologist …Eli Lilly the manufacturers of this drug have a program that helps pay for this drug…I didn’t do any of the paper work, the doctors office did it all, and the drug is mailed automatically to me, and I get bi-weekly phone calls from the nursing staff, and a number I can call with any problems or questions. Don’t think that you make too much money and not apply, you may be surprised,..(and if your doctor doesn’t help you apply just google “Eli Lilly help pay for Forteo”…but try to get the doc to do this, they have to fill out most of it anyway…good luck • Dr. Lani April 28, 2017, 12:33 pm You can call Eli Lilly and they will deal with the insurance company. anyone with advanced OP with fractures should be considered for Forteo at a minimum cost. You first need to be cleared through extensive lab work including 24 hour urine and bone markers – especially the P1NP. • Vicki May 15, 2017, 8:40 am My mother took forsteo, in Athens, Greece for nearly two years now – last blood test showed high liver rates….and after a month of various tests she was diagnosed with pancreatic cancer spread to various places. She is 83 and we are going through hell…who on earth can we thank for this devastating story finale 43. Jamie April 6, 2017, 11:54 pm Hi, I am 37 years old and just had my second baby. I just found out that I have 4 fractured vertebrae and that I have osteoperosis. I took lovenox for three years and that is what caused my osteoperosis. Now my dr wants to put me on Forteo. I’m terrified. • Markus July 31, 2017, 8:03 am I’m a 37 years old, Male. I was diagnosed with Ostepaenia 10 years ago and was told it turned to osteoporosis 7 years ago at age 30. Main areas of osteo are my hips shoulders spine and wrists. I have been on calcium, vit D and Fosamax 5yrs running, then infusion of Aclasta next 3yrs with vit D. Now doctor’s are recommending I try this Forteo. Too much neg reviews are worrying. This drug has not been in Australia for more than 5 years. No history with patients, osteo sarcoma is worrying. My wrists are now weakening more than I first thought. High risk of fracture isn’t good when you have two young toddlers to parent. I want what is best for my future. Research is my current approach as still not yet decided. Please let me know your thoughts • JM August 2, 2019, 7:13 am I’m a young 70 yo female with severe osteoporosis. After my first set of scans revealed the severity of my OP, my PCP started me on Forteo. He provided samples for me for the first two months. Then my insurance company agreed to cover the cost of the drug for me. That only lasted three months, and they stopped paying for it. So, I had to stop taking it. Now I have gone to see a rheumatologist. My vitamin D was very low and until I get it back into normal range, nothing can get started. I will save you the litany of my broken bones and the pain I’ve endured, but they have been many. I live in pain. My experience with Forteo was a good one. My rheumatologist agrees it is the very best medicine for my OP. As I didn’t get the chance to go through the entire 24 month Forteo period the first time, he has requested pre-authorization from my new insurance provider for the remainder of the treatment period. It has been many years since I took it last. I’m excited to be able to get back on it soon. Easy injections, ZERO side effects. God’s got it from there. Blessings to you all and your success with Forteo… • Rose September 27, 2017, 12:01 pm Turn to Holistic Medicine, your body will thank you for it! • Michele May 9, 2017, 8:56 am I happened to have some NewChapter Bone Strength because I was eating vegan, not supplementing, and lost part of a tooth. The health food store recommended this. Now my mom who is 88 has bad osteoporosis. She took care of my Sister (who had cerebral palsy and brain damage -with my dad helping till he died in 1999- until 2006 by herself when my Sister died). Mom was 77 when my Sister died, but quite strong and healthy. She used to carry her around to bathe her and feed her. After my Sister died, pretty quick even, mom began to get smaller and more frail. Now she looks elderly. She got a compression fracture last month and had a Kyphoplasty. All she did was try on a pair of pants and cracked the vertebra! She is quite afraid. Doctor wants to prescribe Forteo. But I just went to Amazon and typed “supplement osteoporosis” and looking at the huge # of positive reviews. Some of the reviews say it brought them up from osteoporosis to osteopenia in a reasonable period of time. We are also adding Boron. It doesn’t make sense to me to treat symptoms only. God bless you ❤ 44. Judy April 2, 2017, 10:51 pm I took it back when first approved in 2002. I was not yet 40 but had the bones of a 65 year old. I took it for the 2 years, and was informed I now had bones that were appropriate for my age. This medicine worked for me. A side note when taking it I had the best fingernails I ever had. That is what brought me to this site, I was trying to figure out what is in the medicine to improve my fingernails now. Anyone with answers on this please respond. • JM August 2, 2019, 7:22 am Try a vitamin B complex, or the vitamins for hair, skin and nails. You should see improvement within a couple of months at the latest with daily use! • Lynn Graczyk May 12, 2017, 12:12 pm What your experience brings to mind is that if your fingernails went back to their original condition, did your bones also or did they stay at the level they were when you took Forteo? • Kymberly April 26, 2017, 12:13 pm Probably Amino Acids…basically protein…only 34 of them in Forteo. A full branched chain of AA is 84 though. You can buy AA at a quality vitamin store…also Biotin helps with nail growth, and Biotin is important in fatty acid synthesis, branched-chain amino acid catabolism, and gluconeogenesis…(the way your body breaks it down and absorbs it) But question? how great was your hair growth..did that improve too? Maybe you ate healthier? Let me know… kind of interesting…makes you kind of wonder if we could really do without Forteo with the right supplements, diet and exercise 45. David Vincent March 20, 2017, 3:10 am I just started injecting Forteo on 3-17-17, so far so good. With the Forteo co-pay program it’s only$4. I am currently 57 years old, almost 58. In the last 5 years I’ve had two left rib fractures. In early September 2015 I sustained a compression fracture to my T11 vertebrae after attempting to move heavy furniture. The doctor put me on Fosamax after my dexa scan revealed osteoporosis T score of something like -2.5. In mid September of 2016 my untreated T11 vertebrae fractured in a different place. In November of 2016 I had a balloon kyphoplasty to repair the damage. It was very successful and I’m pain free. Even though I’ve read lots of negative comments, I’m hoping this drug will be my magic bullet. I don’t want to have to give up bicycling.

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• Jerry March 5, 2017, 10:45 pm

I started Forteo January 31st 2017.
The next day I noticed something was different, could not really explain. I continued the nightly injections and finished the first 28 days. Each day I noticed more problems such as muscle weakness, bone and Joint pain, extreme fatigue, depressed, no motivation, chest pain, difficulty breathing, severe itching, hives and confused or a mental fog. My doctor has taken me off of it for 1 week and it’s has been 3 days. I continue to have low motivation, extreme fatigue, some confusion and still feeling down. If and when I get back to myself I will be terrified to start back on Forteo. My doctor wants me to start taking in the mornings instead of bedtime. Like I said I’m not sure that I will continue or start back.

• Dwight Blackwell July 19, 2017, 9:26 am

Double Ditto To Jerry’s post.

• grnyof 6 June 20, 2017, 3:12 pm

I am going to the Dr in 2 hours to be Prescribed a Osteoporosis Med. I know because of my MTHFR & upper GI tract problems that several of the meds are a no go after researching all of the meds. Forteo has these side effects & many worse ones. Prolia does not seem to be much better. Look up Calctonin side effects are mild compared to others. There is also a Calctonin Nose Spray for Osteoporosis. If my Dr. does not recommend one of the 2 latter I think I will take my chances with the natural supplements. I have never been a gambler & I don’t think my health is worth gambling away.

• Paula March 6, 2017, 7:45 pm

Any of those events you wrote about are likely unrelated to the drug, but may be related to your event itself? Break? Diagnosis?
To better ensure your bone health, you probably need to continue therapy and take the necessary Vit D w it.

• grnyof 6 June 20, 2017, 3:16 pm

Please read the side effect information for these meds.

• IJJ May 14, 2017, 1:05 am

I beg to differ. I’ve had all of those symptoms and have taken all the vitamins needed as well. This medication is not safe! I’m a very active person and lost all energy to do anything. So many side effects. Now am getting blisters on my elbows and fingers and have never had them before and have not changed my eating habits, soaps or anything else.

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• Ginny Noethe December 19, 2017, 8:06 pm

My husband also has been advised to go on Forteo and we are concerned about side effects. He had stomach cancer 17 years ago and had his entire stomach removed so he has had digestive issues which has probably caused severe osteoporosis. He is 86 years old and had a stroke 3 years ago. We are sitting on the fence as to whether we should go with the Forteo.

48. Candace February 15, 2017, 5:05 pm

I’m new to this drug Forteo. they are delivering it to my house tomorrow so, I will be starting this tomorrow. after reading these posts I am very scared about the pain issues. I already am on pain medication for a broken back 8 years ago, that was due to a mean boyfriend who I’m no longer with. I have wean myself from very strong oxycodone down to just hydrocodone over these years. Just this last year was I put on the hydrocodone. I really don’t want to go back on the oxycodone. But, any more pain than I have right now I probably will have to. I’m 53 years old. And 17 years ago I had gastric bypass surgery as I used to weigh 275 pounds and now weigh 110. I don’t want to lose anymore weight I have to eat all the time just to stay at 110. Do most people lose weight on this medication? Gastric bypass surgery caused me to have severe vitamin deficiencies. Have you heard of anyone else having that be the reason for their osteoporosis and being on Forteo?

Thanks for any feedback!
Candace A.

• Lezlie April 22, 2017, 9:50 am

I also had gastric bypass in 2001. 16 years ago they didn’t know much about the effects of the surgery would have on your body. They knew the weight loss but that was about it. Now all these years later I find out I have the bones of a 80 year old at 59. I’ve taken Forteo for 3 months and I’m tired, have lots of leg pain. I’m trying to weigh out taking it or falling with bone fractures. Plus because I cannot take nsaids or antiflammory meds I have to take hydrocodone which has made me gain back 50 pounds of the 150 I lost to begin with. Very frustrating to say the least

• Kathleen March 26, 2017, 12:14 am

Hello kindred spirit. Ive had Crohns disease since 1966 resulting in major loss of colon as well as small intestines so you and I are alike in that manner. I can still function without colostomy and Im glad of that. Started 4T0 June 2015. My weight was 112 and went down to 98-100 and cant gain an ounce. . So Im in the same boat. Got 3 fractures (spine, foot & ulna). i was -4.2 on density and 4TO was only choice for me. I have terrible malabsorption issues, anemia is no stranger to me. I start iron infusions 3/27. As well. With me its like figuring out a puzzle. Plus left hip is bone to bone from Osteoarthritis and I need to get replacement as soon as I can build myself up post 4TO. I’ve had every side effect imaginable. Breaking out in sores, inflamed and swollen inside of mouth, bone pain, fimgertips crack open and cant do anything for days as it feels like stab wounds, chest pain, shortness of breath. I could go on 4ever. I hope you are not affected as badly. Im done June 4th and it cant come too soon. God bless you Candace. You will be in my thoughts and Ill be rooting for you. Keep your chin up and show that 4TO who’s boss! So you are not alone in your plight. I wish you the best.
Sincerely,
Karhleen

• Shari March 2, 2017, 10:05 am

I am now on Forteo for 6 months. There is no pain even giving yourself a shot.

• Randy June 22, 2017, 12:26 pm

Good to hear that things are going well for you.

49. Pat February 3, 2017, 6:31 pm

I use Forteo, but sadly I experienced bad nausea, despite uses anti nausea meds with it. I had to stop after 5 weeks. I do have access to current research as my son is a researcher in an osteoporosis lab. The concern about cancer did not bother me as the type of cancer found in very few lab rats was a type of cancer found in growth plates. Rats growth plates do not close, yet humans do. Because a rat got cancer, Eli Lilly had to report it and hence Forteo is limited to a maximum of 2 years over your lifetime. I had planned on using it longer as once you stop, you lose the bone you gained rather quickly. You need a bisphonsphate or Prolia to maintain what bone increased.
,

• Shari March 2, 2017, 10:06 am

I didnt know you lost the bone you gained??? Why?

• Pandora99 April 29, 2017, 11:25 pm

Because that is the natural progression of osteoporosis. Think of it as a reservoir of bone material. Forteo builds it up but once you stop, the process of loss returns if you do nothing to maintain it. Forteo buys you some time and you can build up the bone with it, and then maintain that built bone by getting on one of the meds that stops bone loss even though it doesn’t build it.

50. Linda Museus January 14, 2017, 6:14 pm

I started Forteo in 2013 after a DEXA showed by right him at -2.7. Took it for 14 months with NO side effects. I went off it due to cost and started taking an algae-based Vitamin D (which cost about $40 a month). Last August, another DEXA showed my bone density in my right hip had decreased 5% to -2.6. I started the Forteo again yesterday. I have another 10 months and I decided it was worth the cost – altho’ it has obscenely doubled in cost in two years. When it first came on the market in 2002 it was$500 a month. Now, it is about $3,000 a month (I have insurance that pays about 2/3 of the cost). This increase in price is outrageous and totally not justified. But, it’s the only drug that works. I refuse to take any of the bisphosphonates due to bone fractures caused by them and my dentist has advised against it. So, I’m stuck between a rock (cost) and a hard place (horrible side effects of other drugs). I value my ability to get around, walk, etc. and not worry about fractures or osteonecrosis. So, Forteo won out, big time. I have been healthy all my life and take levothyroxine for a slight decrease in thyroid function and a BP drug for high BP which developed after hernia surgery. I heartily recommend Forteo if you are in good health and can afford it. • Ron March 4, 2017, 9:56 am Check with Forteo they have me a discount prescription card and it only cost me$7 a month

• Linda Museus January 14, 2017, 6:17 pm

Oops – a couple of small errors in my post. The first reference to my osteoporosis problem said “right him” and should be “hip.” The second was my bone density went down 6%, not 5%. Little errors, but I’m a stickler for accuracy.

• DD January 19, 2017, 11:29 pm

Are you aware of the Co-Pay card? Google ‘forteo co pay card’ for the info. You may be eligible for a reduction in your costs. It was very easy for me to qualify. It’s not based on income. If you haven’t already, you should contact them.
Best,
D.

• john April 18, 2017, 6:37 pm

@D, thank you so much for posting this! I had no idea something like this existed and I was considering paying full price for another month. This makes a world of difference!

• Shari March 2, 2017, 10:07 am

Yes, i got the card and now pay $4 a month • Jen February 1, 2017, 1:32 am Linda I was able to go online and look up prescriptions for lower cost ! Lilly company had a program to get this Forteo free for 3 years , I wish you could get on a program like this ! And anyone else that need this , I had Fracture of spine they replaced it with rod, six months later fractured the lower part so I had another surgery they said see bone growing back now , I am very lucky ! Good Luck to all 51. Diane December 28, 2016, 2:51 am 73 yr old Canadian female with Rheumatoid Arthritis. 8 years separately on areva (sp? – I think that’s what it was)), actonel, fosamax. Various insignificant fractures (small bone side of each foot in separate falls) 2000, 2001, 2009. Summer 2016 fractured ankle and opposite femur. Visited hospital Osteo dept a week after ankle fracture found and complained about my opposite hip hurting. X-ray showed fracture. Surgery the next week to insert pin (long rod) in my thigh. Started Forteo 3 weeks ago (paid by our govt health plan because of my age and risk of more fractures). Since then, extremely fatigued but also very achy in bones especially leg and ankles. I just want to spend my time asleep and curled up under a blanket. Thought cause might be due to RA because I had to stop Enbrel for 6 months due to surgery and resulting problems but having been back on Enbrel for a few months now (long enough for it to kick in again and work well for me again) , I can only attribute the aches etc to Forteo. Found this site while looking for feedback on Forteo. I hope side effects abate because I don’t want to live like this for next 2 years while on Forteo. Have side effects eased up for anyone after awhile while still on Forteo???? • Burta Guray Samli June 20, 2018, 1:19 pm Look and search Gerson Treaphy • Kathleen Rodriguez February 10, 2017, 12:02 am Diane, sounds like you’ve been through the mill my sweet friend. My copays are$60 mo. I was deathly sick the very first day then Side effects for me came on slowly but one after the other like gangbusters. Worst was the 12# weight loss (Im 101 now) as Im too thin to begin with and look like death warmed over. Ive had Crohns disease since 1966 as well. Im 70 yrs young. I still have bad itching and sores all over arms, chest, back, face & scalp. Mouth inflamation and ulcers. Lost eyebrows with half of my hair as well. Sight issues. Terrible terrible fatigue and loss of organizational abilities.. Balance and vestibular problems. Cant walk and chew gum at the same time. Anemia. Vitamin D deficient. Im done in May and pray that I will return to somewhat being normal as I was prior to the “Poison Pen”. God bless and keep you strong. We will be strong and beautiful as we once were. Im going for quality of life and have the will to keep on plugging. Love, Kathleen

• Indelisa Mejia January 7, 2017, 9:01 am

I stared taking FORTEO last February and I have been in pain for about ten to ten a half months, the pain it’s all over my body I’m thinking seriously on stopping Forteo, plus my co-pay went up from $20. To &50. This year I’m a 69 year old living on retirement. 52. Monica Lynn Lorain December 25, 2016, 1:26 pm Sam, you are also in my prayers. Gotta be tough being so young and suffering like you do, but trust me, we all have a purpose here on this earth that is not always clear. Keep strong. Keep researching possible treatments (not just what one doctor tells you). A hopeful outlook can go a long long way! 53. Jack Thompson October 6, 2016, 2:13 am My previous comments regarding the truth and efficacy of Forteo have been removed. Let me be more diplomatic. The parable regarding Forteo is well intentioned, I’m sure. Let me present the facts regarding why Forteo works. The bit of truth in the story is that the price of Forteo is high. Commercial insurance pays for the drug, when the Prior Authorization is approved, and the company, Eli Lilly has a co-pay card which reduces the cost to$50 a month. That is reasonable for the outstanding efficacy and safety of the drug. To call it a drug is really a stretch, though, as Forteo is an authentic representation of a molecule made in the body by every human being — parathyroid hormone.

While it is true that it is a fragment of the molecule chain, the first 34 amino acids of an 84 amino acid chain, it is no accident. Those first 34, precious and by the way, natural occurring amino acids are the ones responsible for bone re-modeling. You see, Forteo replicates the body’s natural ability to eradicate old bone through the cells called osteoclasts. Old bone weakens, and the body’s natural defense is to remove it, like all other old and dead cells. Forteo also stimulates the other side of the bone re-modeling process by stimulating Osteoblasts, whose job it is to form new bone to take the place of the re-sorbed bone.

The 34 amino acids were found through many years of research to be optimal in the stimulus of a very natural process. 14 years have proven it’s efficacy by helping prevent fractures by helping the body to re-build new, natural bone.

This is unlike the bisphosphonates, and Prolia, which add density to existing bone, but these drugs, called “anti-resorptive” agents do not address the problem of aging, fragile bone. They really only delay the process.

While reviewing this site, I have found that the author has many helpful, nutritional tips which help address bone health, and they have my support. Diet and excercise are the first line in addressing bone health. Weight bearing exercise, and good nutrition are vital keys. One study showed that jumping rope may be one of the best weight bearing exercises because it produces enough stress to help encourage the strengthening of bones by the stimulus of the remodeling process described above.

However, for some, and perhaps many patients, that simply isn’t enough. While I agree with the author that the bisphosphonate class of products and Prolia do not address bone health, I assert that Forteo is in a different category and should not be feared for those patients who have a very high risk of fracture, which includes anyone who has already had a previous osteoporotic fracture.

In my 14 years experience with Forteo, I have seen many patients helped by this product. A patient may not always gain a lot of what is labeled “BMD.” or bone mineral density. DEXA scans, and BMD, which helps assess the relative bone health, is not very effective in evaluating the new bone formation that takes place with Forteo. DEXA is a 2 dimensional scan which is limited AFTER the course of Forteo therapy in assessing the 3 dimensional effect of the drug. SO, some patients gain BMD and some may not gain any. But the effectiveness of the product is best measured by the reduction in new fractures, which is very high with this product after 1 and 2 years of therapy.

The mechanism of action of this drug is not mysterious at all. In fact, it is well known. It simply counteracts the effects of aging, and resultant loss of hormones, specifically, estrogen in women, and testosterone in men, the loss of which contributes mightily to bone loss. Both are helpful in the remodeling process.

In the interest in science and truth, I ask the that author allow my statements to stand, because they can be easily verified and authenticated, and actually have been proven in many, many peer reviewed scientific journals.

There are limitations to everything, and Forteo has limitations on the package insert for patients who have had radiation treatement, for instance. But only because those patients present at a higher risk for certain types of bone cancer. The manufacturer of the product has maintained a safety registry throughout the lifespan of the drug, and there has been no causal effect of any prolonged difficulty. Most of the side effects that have been mentioned on this side have been known, but are usually transient in nature. Of course, coincidental issues can occur with different patients, so to assert that Forteo causes hair loss or itchy skin is simply not correct.

And some medical professionals that I know, esteemed leaders in the field of bone health — who have devoted their lives to treating osteoporosis, such as those at Columbia University, have treated patients for longer than the FDA guideline of 2 years, and have achieved outstanding results for patients whose bone health had been severely compromised.

In my professional view, the very natural origin of this product, from molecules produced by the human body itself, presents absolutely no danger to humans whatsoever, but the very small dosage on a daily basis can be a game changer for the patient with severe osteoporosis.

• Terri July 15, 2017, 12:23 pm

I am 57 year old skinny white female with family history of bone disease and had been breaking bones with alarming frequency… both humerus, and several foot fractures. I finished my 2 years on Forteo 6 months ago and have had no more fractures. My numbers all went up in the right places and I had zero side effects. Forteo was right for me. Plus I have an insurance plan that paid for everything. Lucky girl.

• Carolyn Parkins July 3, 2017, 12:53 pm

I concur wholeheartedly

• vit April 21, 2017, 2:53 am

Thank you so much! I am 49 and just had 3 maybe
more fractures…unclear bcI had too much swelling and fluid in my bones when my MRI was done.I for sure broke my heels bilateraly and my left fibula. i am a daily exersizer and was told in 2000 i had bones of an 80 yr. old. Im terrified. I don’t eant to be crippled. I took Forteo in 2003 for lime 8 months. My DEXA scan improved greatly. I had no side effects then. Now 5he new endocrinologist wanted to put me on Prolia after I read the list of the side effects there’s no way in hell I was going to go on it. I am very sensitive to medications. I’m going back in a week and telling her that I will not go on anything else but Forteo. I was nervous but after I read you’re writing is no doubt in my mind I’m taking it. If I have to risf getting cancer it would be better than being crippled. I also heard that the rats were given 100 times the dose they should have been daily. A rat weighs less than 2 pounds. I am thin but I am well over two pounds.I am more concerned I will gain weight on this med. wich i dont want. does it affect your metabolism? I would be interested in talking to you and find out where you work and if you treat patients ? You seem very knowledgeable and the doctor it originally treated me with this retired. I am lost I trusted him and I know that I can count and his recommendations. He would never steer me wrong. and even if you don’t treat patients I wondered if you could recommend someone in my area? Thank you for your helpful comments.

• Mrs John December 8, 2016, 2:56 am

I am someone who is a new user of Forteo, paying the $50 per month that has been mentioned. So far, I have found the injection pen easy to use, and I’ve had no unpleasant side effects. I believe every medication has the potential to cause some serious side effects. I’m grateful to read something encouraging regarding Forteo. Thank you! • Sandy April 26, 2017, 6:52 pm Hello all, I am new to this site. I am reading that many of you are getting assistance to cover the cost of this medication. I am 67 and retired collecting social security. I just picked up my first script and it was$1020.00 for the med & needles! Any suggestions on where I can get help would be grately appreciated. Thanks.

• Kathi Holden April 11, 2017, 8:10 pm

Jack are you a patient that has or is currently using Forteo? Just curious

54. Jack Thompson October 5, 2016, 12:58 am

The above article is probably the worst, most unscientific piece ever written on Forteo by someone who has very little accurate knowledge of the drug.
First, the mechanism of action of Forteo has been known since it’s introduction in 2002. It stimulates bone resorption, thus eliminating older, weaker bone, and then in turn, builds new bone by the stimulation of bone building cells, osteoblasts. In fact, it has always been known to turn on the natural process of bone remodeling for those who have lost that ability through horomonal change and age — post menopausal women and men with idiopathic or hypoganadal osteoporosis.

It is not a “mystery,” as the author would lead you to believe. Nonsense.

The use of the 1-34 portion of the 84 amino acid chain is no accident. The discovery process during the development of the molecule found that this limited portion was optimal and responsible for bone remodeling in the body. The full 1-84 amino acid chain which has also been replicated, and approved for use in Europe DID NOT stimulate the formation of new bone as well as Forteo.

The addition of parathyroid hormone to build bone DOES seem counter intuitive, as physicians are taught early in their medical training that excess endogenous PTH causes BONE LOSS. The use of recombinant PTH 1-34 and it’s successful and safe use to form new bone is known as the “parathyroid paradox.”

It was found, in research done over many years, that a small amount (20 micrograms — a tiny drop in the palm of your hand) is optimal and actually causes brand new bone formation.

One patient complains of joint or bone pain. This has been quite common, but is normal and expected when new bone is being formed, much like the growing pains we all went through as kids as our bones are growing.

Overall, Forteo, has been shown over the last 14 years to be the only product that actually forms new bone in the body, not just adding bone mineral density as every other product does.

During the clinical trials, a specific type of rat species, Fischer 344, were given mega doses of Forteo over their two year life span and developed tumors. This species does not remodel bone. Rats bones only grow. Adding an effective growth hormone sped this development. Tumors were never discovered in any other animal species in which the product was tested.

The conclusion over years of clinical trials and now 14 years in the market place show Forteo to be the safest drugs ever brought to market. And that makes sense as it only replicates a naturally occurring hormone already made in the human body.

• Randy June 22, 2017, 12:35 pm

Thank you so much for the information. I had my first injection yesterday and was questioning my decision. I feel so much better about it!

• Colleen Marie March 19, 2017, 3:45 am

Thank you for your factual and measured information. I was just given the sample at the Endo office while awaiting insurance approval. I was hesitant to begin the therapy without some experienced historical perspective. I found your comments helpful in addressing the specific concerns I have and your observation that some discomfort while bone is developing, while possibly unpleasant, may well be evidence of the positive effectiveness the therapy intended.
I should like to communicate with you regarding my progress as my trepidation has been replaced with optimism. Thank you again.

55. Raeleen September 3, 2016, 7:45 pm

I was givin my first bone density test 2 months ago my dr called me in to tell me in her 14yrs she has not seen a T-score like mine -4.1 hip, -3.7 neck, an -4.1 spine an I just turned 43yrs old!! So being told from several drs that death is a big possibility for me if I get a fracture is a nightmare!! I thought fighting my Gastroperisis that I was diagnosed with 2yrs ago which already makes me sick an fight pain everyday and extreme weight loss making me under 100pds at 5’7 was the worst I could be told or at age 34 when I was told I had Endometriosis an had to have a complete hysterectomy never to have children, but No this is sickening beyond words!! My dr wants me to start Forteo even though it will make me loose more weight an more pain an not able to handle meds w/o something bad coming from it! At this point I really don’t know what to do or think of this mess! Do I try Forteo even with a very high risk of more trouble or not! An there should be A lot more awareness out there on Osteoporosis because there was none for me..just the shock of my Life!!

• GiGi January 4, 2017, 10:50 am

My mother has severe Osteo and has been on Forteo 6 months at a time….due to costs we stretched it out. She had zero side effects and it really helped build her bone strength. After 5 spinal fractures repaired by her amazing doctor, Dr. Joseph Lane (HSS & NYPH) in NYC and kyphoplasty, Forteo was the best choice for her. Along with 4 Citracal pills and Vit D. Research and do what is best for you.

• Georgette October 2, 2017, 12:31 am

How long after fracture did you Mother have kyphoplasty. I had compression fracture, t-7, almost 4 years ago and the pain continues to be unbearable. Doctors say it should have healed by now and not be causing pain. It continues to get worse, and I’m wondering if it’s to late for the surgery. Can get a straight answer from doctors. I have severe osteoporosis and have been on Forteo for almost 2 months. Didn’t want to, but I don’t want another fracture. It’s just too painful.
Thanks!

• Alicia Carbonaro November 13, 2016, 11:27 am

I’m in kind of in the same situation as you! I’m only 32, and I fractured 4 bones in a 6 months span, just by walking both my hips and feet. Did you ever find a great doctor?? At this point I’m trying to find a doctor that will help me, I will travel anywhere.

• Georgeanna November 11, 2016, 8:00 pm

Honey, I’m 62 years old and was diagnosed 2 years ago with an overall score of T-4.3. I didn’t follow the Doctors advice and stay on my meds, thought I would be fine. Within five months of stopping meds, I suffered six lumbar fractures/all Spinal, just about six months ago. I had Kyphoplasty done on four of them, not the last two.I have suffered pain so horrible that I thought I would die. I’m flat on my back typing this. My recovery has been very slow, and still terrible pain. My life has forever changed without any warning. I was 62, but still bouncing around like a teenager. This has devastated my life. I’ve been on Forteo for almost three months. I didn’t notice any side effects other than a little weight gain, until I started my third “pen”, I’ve been suffering horrific lower back pain. But, I have to try, cause anymore fractures and I could die. It’s hard not to give up, but I’m trying. The pen I was referring to is the thing that has the Forteo in it, it’s like a pen, but has premeasured doses in it. I hope and pray you can figure something out, before you Fracture. Do all that is possible to prevent fractures. But, my Doctors said I could cough and get and were right, my last fracture was result of a cough.

• Bebo March 27, 2017, 12:14 am

Do u think kyphyoplasty helped?

• Mary Gallenski November 19, 2016, 11:46 pm

Dear Georgeanna…i feel your pain and frustration. I have recently been diagnosed with Osteoporosis with a T score of -4.1 and a previous L4 fracture.
I have advised that the only medication I should even consider is Forteo for this condition at this time. Here’s my problem…I am on disability for Lupus, Crohns’ Thyroid Cancer and on and on. Therefore, I am on Medicare and have a Medicare prescription drug program, Humanna. Here’s the kicker the cost for a box for 28 days for Forteo is $3100 and it was approved for payment with a co-payment of$1000.00 a month. There is no way I can afford this and the card that I was given by doctor from Lily states if your on a medicare program you don’t qualify for discount. Does anyone know how else to get this covered or any other suggestions as to medicine. Thanks for your help.

• Rose September 27, 2017, 11:46 am

Turn to holistic medicine and do an online search on how to Reverse Osteoporosis.

• Z December 20, 2016, 12:42 am

Mary,
Please reach out to your medical office to see if you qualify for “Lilly Cares”…. this is a Lilly patient assistance program that could potentially get you qualified to have Forteo for free… also if you don’t qualify for that, you could find out if you qualify for LIS Medicare program (Low income subsidy)… both of these are ways you can potentially get the Med at $0 out of pocket. • BabyBones December 14, 2016, 5:35 pm Dear Mary , Your Dr. Can ask Lilly for free samples of the forteo for you.You csn also call the forteo help line and they will help you.Lily is one of the best comeanies I know to help folks.Hope this helps God bless. • Carol February 28, 2017, 7:30 pm My doctor gave me several free samples when my insurance changed to medicare. I also heard that it is less expensive if you order it from a pharmacy in Canada. • Wendy Branham September 19, 2016, 11:19 am Hi, thank you for your comment, you just described me! Unbelievable to find another person my age who has had the very same experience having the endo and the hysterectomy and then drs saying they have no idea why my t-score is so bad at such a young age, I was 44 when diagnosed. I took Forteo for one month and had several bad side effects, mainly joint pain but when I started the next pen, I had a severe reaction and severe pain spread across my lower back. My doc said I might have gotten a “bad” batch or something could have happened during shipping so I got them to replace the pen with a new one. I still haven’t tried the new batch because I am so terrified that I will have another reaction to it. I have already suffered fractures and I also need a total hip replacement due to avascular necrosis in my hip. That bone is dead. No explanation. Not caused by Forteo but I’m in bad shape. Because of my t-score being so low, there is a risk of my leg breaking when they go to put the pin in it for the hip replacement so I’m terrified. Originally they wanted me to take the Forteo for six weeks before surgery to strengthen the bones but now they are rushing me to go ahead and schedule. I’m an emotional mess because of all this. I hope things go well for you. I was so shocked to read someone comments that they were virtually a carbon copy of myself you are not alone. • Anne October 23, 2016, 4:35 pm I’m having a bad day…My heart goes out to you. This is an especially difficult way to live, isn’t it? My prayers go up for you. • Anne February 8, 2017, 3:55 pm My heart goes out to you too. This is an especially difficult way to live. I made that very statement to my doctor, and she nodded ‘yes’. I felt understood. I just keep praying. The God who made me hears, sees, understands. He is my rock. Still…bad days come. Hang in there. 56. Karen_r August 31, 2016, 11:18 pm I would like to know why this article is so anti-FORTEO???? Was it commissioned by the bisphosphonates manufacturers???? 1. I was diagnosed with all out Osteoporosis at age 46 (T-score being -3.3 in one area, -3.1 on another and in the high -2’s in the other two areas of measurement. It took my Dr. about 18 months to figure out, after doing MRIs, other nuclear medicine tests trying to get anything to show up, scans (4 altogether) and many blood workups (they thought I had leukemia because of how low the amount of calcium in my blood (normal is 18-20, mine was at 9) was and sent me to an oncologist). They thought cancer before thyroid. This, I later found out is typical of trying to find out what is wrong when there is no obvious or diagnosable cause. Finally the doctors’ (I had a 3 dr. team) best educated diagnosis was that I had a hyper-parathyroid even though there was no 100% confirmation. So essentially the surgeon went in blind (totally scary) with drs hoping that that was the cause after eliminating anything else they could think of. *You have 4 parathyroid glands, each weighing approx. 32 mg. each. 3 looked completely normal when she opened me up, but right away my surgeon saw the bad one. It weighed about 938 mgs. It was huge! That was where all my calcium had been sucked up to. 2. Remember that Osteoporosis is a degradation of your bones at different levels as well as your jaw and teeth. VERY IMPORTANT! That explained why over a period of years my teeth went to shit. Also, once the dr’s remove the parathyroid, they still can’t tell you how long it’s been on the fritz. 3. Now, keeping all of that in mind, ** HMO’s have to try and keep costs down contractually. So rarely (it is getting better though) will one’s dr. (I sure as heck know mine didn’t) bring up alternative treatments one of which is FORTEO (which costs between$1300 & $1800+ per month) and which lasts for 2 years.$36,000.00 vs. $2,000.00 bisphosphonate treatment cost for 2 years. THINK ABOUT THAT. 4. I refused to go on any type of bisphosphonate because of the very real possibility of the “very rare side effect” as cited by the bisphosphonate industry, called Osteonecrosis, which can be a not “so rare side effect” due to the deterioration of the condition of one’s teeth, mine which needed and still do need extensive work and any infection associated to that dental work can start the “very rare side effect” of Osteonecrosis. **Which is when your jawbone starts to die and MUST BE REPLACED, MUST BE REPLACED by a metal-titanium?? replacement jaw and fake teeth implants. There are no in between fixes. **THIS IS NO EXAGGERATION. NOT AT ALL. **I’ll bet the bisphosphonate industry did no studies whatsoever that included women having major restorative work-root canals, bridges, tooth/teeth removal-being done at the same time as being on a bisphosphonate regimen. Or w/in at least 2 years of having had been on one. And if they did, they buried it. (Think tobacco). 5. My dentist and any other informed dentist worth his salt, did and will refuse to do any type of restorative dentistry during any period of being on any type of a bisphosphonate regimen. The rate of Osteonecrosis skyrockets if dental work is being performed while on said regimen and/or for a period of time afterwards. But dentists don’t know what that time period is. What? Why?? NO STUDIES!!!! Something which your dr. will conveniently “forget” to tell you while recommending that treatment. **I can’t prove this but it is something I deeply believe down to the bottom of my soul; that after the hours and hours and days just filled with researching all of the different treatment options available to me as well as the side effects of each individual option; ***As well as speaking extensively with my dentist and my parents’ dentist who just happened to be the president of the ADA in my very large county. 6. The injection is not at all as described above (admittedly I was a VERY wary at first). But the “nano” needle which is smaller than the 1/32 needle that the pharmacy typically says is the smallest, that fits the FORTEO pen, really does make the injection practically painless. It just feels like a very light pinch if that (and may I add that just the thought of a needle makes me quesy). 7. Within the first year, compared to the baseline DEXA I had right before starting FORTEO as well as calcium and daily IU d3 2000 vitamin d supplements, I experienced about an 8% increase in bone growth and density. 8. And 8 months into the second year so far, every area measured by the DEXA except for 1, my left forearm, has been downgraded to a T-score of the 3 other areas to -2.4, -1.8 & -1.4. keeping up with doing everything alongside as mentioned in #7, plus I added magnesium 6 or 7 months ago (supposedly mag. helps with the absorption of calcium into the bones. WooHoo!!! I’ll have my last DEXA related to my FORTEO treatment 1-2 months after completion of treatment. 9. Clinical studies actually do show that FORTEO is more effective in building new bone than ANY bisphosphonate. With much milder side effects of which I haven’t had any, and absolutely no chance of Osteonecrosis. Look it up for yourself. • beckysue mom of 3 October 9, 2017, 2:18 am i found this. start researching in these data bases. Read complex studies always. be informed. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4939987/ • beckysue mom of 3 October 8, 2017, 9:12 pm thanks for your reasoning and research. I will persist with this terrible forteo flu • Kymberly April 26, 2017, 1:28 pm Karen_r…but what are you planning on taking after the 2 years of Forteo. The bone growth will not remain, and we are suppose to go on Prolia or a bisphosphonate. I have practically the same T score as you do -4in spine, -2.6 hips…I have been a fitness professional all my life 30+ years, and a nurse. Dancer and gymnastics since I was 3 yrs old. Running and hiking since I was 20. I believe levothyroxine did this to my bones…I like you did all the research and finally chose Forteo…but whats next???. I will be taking estrogen and will insist my doctor change my thyroid meds to Armour Natural…but I am continuing research for something else to take after the Forteo. 🙁 • Robert September 9, 2016, 1:32 am 55 yo. MALE. Completed two year treatment course in Feb 2016. The benefits are impressive. The side effects are not nice and some I wasn’t aware that Forteo was causing such as severe hair loss, intermittent nausea, increased pain in chronic pain syndrome, dry flaking skin, dry flaking scalp, increased anxiety (bi polar), depression overall mental health well being…. many others I will go into another time. I am just recovering from shingles outbreak and suffered serious bout of pnuemonia while on medication !!!! As I reflect more as time passes I will post more. Tks Rob • Rose September 27, 2017, 3:03 am Thank you very much for sharing your Forteo negative experience because my mother was recently prescribed by her dr to take the daily injections which sounds costly and painful! I had a gut feeling she wasnt looking into her best interest since she has a cozy relationship with the pharmacuetical drug industry. I won’t be letting her touch this drug and will be looking into Holistic Medicine instead! • Anne October 23, 2016, 4:40 pm Interesting…I too had shingles while on Forteo. • Terri July 15, 2017, 12:56 pm Shingles…. me too! • Anne February 8, 2017, 4:06 pm …VERY interesting! I too had shingles after starting Forteo. 57. P Hall August 30, 2016, 12:50 pm I have just been on Forteo for a month.. I am relatively healthy, take Vitamin D daily, not overweight, do not take any other prescribed medications & have no other health conditions. My MD had put me on “once a month” Risedronate (Actinol) pill until I could get into the bone doctor. The bone doctor ran a very thorough scan and it indicated I was borderline.. I cant remember the “T number/score” but I am 51 yrs old.. The bone doctor then put me on Forteo. I recall one of the nurses informing me that one of the side effects is flu-like symptoms.. After a couple of weeks of being on Forteo, I became sick with flu like symptoms for almost 2 1/2 weeks, days i didnt even feel good enough to go to work.. No one at work or in my family was sick and like I said I am relatively healthy.. so I’m assuming it was this side effect as opposed to picking up a cold somewhere.. I am getting ready to place an order for my first refill, so I guess i will give it another try and see if I get flu-like symptoms again. However, my real concern is that my mother did not have any bone issues, but she had cancer four times.. two breast cancers (@ age 45y & 61yr), kidney cancer (@ age 69) and following all of that, had a rare form of leukemia the last 2-3 yrs of her life (passing in 2011).. My mother was never prescribed any hormone/estrogen medicine as a result of menopause and/or aging issues because, if I recall correctly, due to her cancer/cancer history.. Although I have had no bouts with cancer, with my mother’s history, I have a strong likelihood of developing some type of cancer in my lifetime…If I understand correctly, Forteo is a hormone/man-made drug… Should i even be taking this with my mother’s cancer history ? Should I be on Forteo if I am only borderline? Would going back on the Risedronate be better/safer for me with my mother’s cancer history ? • Vivian Goldschmidt, MA August 30, 2016, 1:10 pm Hi P., As you’ve probably aware, drugs are never recommended on the Program -it’s all about drug-free ways to manage osteoporosis. What you decide, of course, is entirely up to you; no one can tell you how to proceed in the way that’s best for you. I encourage you to keep researching and take your bone health into your own hands, and decide what is best for you based on the information you find. Feel free to start your research here at this site! There’s quite a bit of free information here. 🙂 58. Randy August 29, 2016, 8:09 pm Male, 61, suffered a spinal cord injury in 1972 and have been in a wheelchair ever since. Began taking Allendrolate (Fosamax) in 2006. In 2011 my endocrinologist referred to the Mineral Metabolism department at UT Southwestern in Dallas. After DEXA scans and labs the UT doc kept me on Fosamax and removed Calcium and Vit C. He ordered me tot take Citrical+D, Vit D3 (2000 IU), a daily multivitamin and to consume 2 servings of dairy daily. My 2014 readings were–> L4 was excluded based on standard exclusion criteria of T-scores. In the region of : Lumbar spine L1-L4 vertebral bodies Bone mineral density: 1.026 g/cm2 , T-score:-0.4, Z-score: 0.2 Left femoral neck Bone mineral density: 0.419 g/cm2, T-score: -3.8, Z-score: -2.8 Total left hip Bone mineral density: 0.503 g/cm2, T-score: -3.5, Z-score: -3.1 Right femoral neck Bone mineral density: 0.421 g/cm2, T-score: -3.7, Z-score: -2.8 Total right hip Bone mineral density: 0.583 g/cm2, T-score: -3.0, Z-score: -2.5 ——- My 2015 results “show significant degenerative changes in the lumbar spine with exclusion of L4 on T score criteria.” Percent change in BMD from baseline study: Lumbar spine: -4.2%* Left total hip: -8.7%* Right total hip: -0.6% Percent change in BMD from most recent previous study: Lumbar spine: -4.2%* Left total hip: -8.7%* (VERY large loss in a single year) Right total hip: -0.6% In our facility changes greater than the following are considered significant: Hip 3.4%, Femoral neck 4.2%, Lumbar spine 3.4%. ———- I began taking FORTEO in early February 2016. Only side effects were a bit of transient pain in my lower legs a few weeks in and lasting a couple of months. I was told this was evidence of FORTEO working as intended. My primary doc also told me to be sure to take the full 2 years. He said I’ll see the benefits skyrocket in the last 6 months. 59. Junogirl August 23, 2016, 5:37 pm Six years ago, my bone density scan showed I had the bones of a woman in her 80’s and I was 49. I was not overweight, had been doing weight bearing exercises for years, did not smoke, and barely drank. I had estrogen therapy for about 2 years when I had a salpingo-oopherectomy at 35. My doctor determined my parathyroid was not working and I began daily injections of Forteo as Boniva made me violently ill. After six months, my bone density scan showed my bones were like a 35 year old woman. So after many years of multiple fractures (7 in my thoracic and lumbar spine alone), I was back to being myself, but without fractures or pain. The only side effect I had was that when I did the injections, my blood pressure would drop. I learned to inject myself sitting in bed, ready to go to sleep so I could lie down after the injection. For me, it was a gift to have this medication, and it was only the cost of my co-pay each month,$40, because the manufacturer provided vouchers for the rest. They also provided an insulated travel case to carry my dosages when I took trips. I didn’t take it as long as others, but my doctor said my results were perfect and I could go off at six months. So not all experiences will be bad on Forteo.

• Sandra Williams August 28, 2016, 6:04 pm

My 88-year-old mother-in-law fell and broke her pelvis in three places in November 2013. She started Forteo November 16. She took it for 12 months and now walks without even a cane. What I have learned is that the elderly will keep falling, but they don’t have to keep breaking bones! Forteo kept her out of a nursing home, and it made possible a high quality of life. Bones are everything for the elderly. Motion is life! This drug has been a miracle for her.

60. Amy August 16, 2016, 2:23 pm

I’ve already taken forteo for 2 years. My last injection was in October 2015. My osteoporosis is back and worse now.. My doctor sent me in for Prolia infusions but am not a candidate. As of today the put me back on forteo… With no end date… Anyone else been on for the 2 years and started back up?

• Anne October 23, 2016, 4:47 pm

…curious why you were not a candidate for Prolia. Can you share? I’m currently on Forteo, but have heard that after Forteo a person has to take another drug to keep whatever you might have gained on the Forteo, otherwise you lose it rather quickly. I don’t know what they mean by quickly.

• Mostafa August 24, 2016, 8:40 am

Dear amy,
You cant use forteo again after you finished your 2 years treatment.

• Debra Kapustin August 23, 2016, 9:49 am

I’m surprised to hear you were put BACH on forteo. I’m on it now and my doctor (and endocrinologist) told me that I could only use if for 2 years and never again. After the Forteo, he plans on putting me on Prolia. He said you can never us Forteo again after being on it for two years so I’m a little puzzled.

• Amy August 24, 2016, 1:20 pm

They said I was not a candidate for the Prolia… That’s why they have put me on Forteo again. My only concern now is it is not covered by my WellCare:(.

• AnneM February 8, 2017, 5:26 pm

There’s another Anne on here, so I decided to change my name up a little. I’m curious, like she is, why you were not a candidate for Prolea. Can you share? Thanks!

• Lou August 24, 2016, 12:51 pm

My endocrinologist from Columbia University Medical Center, NY says there are exceptions where they keep patients on Forteo longer than the recommended 2-year limit. This is only in cases of extreme osteoporosis where the risk outweighs the benefits, depending on the risk of fracture.

61. Karen August 8, 2016, 3:09 pm

I was prescribed Forteo a year ago, latest Dexa scan shows little improvement in my bones. I told Doctor of heart palpitations which started a few months ago after taking the drug so I stopped using it. She told me that she never heard of heart palpitations as a side effect and wanted me to go back on it, take it a different time of day and see what happens. Palpitations came back, took myself off of it again. I’ve made an appointment to see a Naturopath, I’m tired of this conventional medicine “wisdom”!

• Kathi Holden April 11, 2017, 10:33 pm

Just started my second month after taking a 3 week break to get rid of feeling dizzy and nauseated from the first month ( also bone and joint pain). Back on now and it’s day 6. Couldn’t sleep all last night and heart palpitations all afternoon. Not taking it tonight! Have this feeling like an anxiety attack with a touch of depression.

• Rhonda August 24, 2016, 4:36 pm

I started on Forteo in March 2016 I’ve never had heart palpations but I too am having them…. Was wondering if I should go off of it as well. Also really bad Charlie horses at night 🙁

• Me September 13, 2016, 2:18 am

Yes Charlie horses are a side affect they can be horrible

• DAH-RN August 19, 2016, 12:21 pm

Yes, I stopped Forteo daily injections exactly after 2 years; that was the prescribed/maximum time any Patient should administer injectible Forteo. So little was known both: *HOW Foteo lays bone down & * what the TRUE Long-Term side effects are.
Born with fine bone structure & multiple Scoliotic rotational spinal curves, I apparently was a good candidate for this “new” drug. I was & am able to walk & while there’s pain from my Scolioses, I’ve know this pain since my 1st spinal surgery. Foteo was begun in 8/2012 & ended exactly 8/2014. After a bit over a year, I was experiencing severe Gastrointestinal, Neuropatholigical & facial bone pain & jaw idiosyncrasies. Today, 8/2016, my bone density is as low as the day Forteo injections began, I no longer have an appetite (guess it’s good for weight loss), if I eat more than 1 meal/day, my GI pain wakes me, it’s so intense, I can’t remember the last time I slept more than 3 hours at a time. I guess worst of all, my Cholesterol (LDL THE BAD 1), is so high, I’m taking drugs for high Cholesterol & Hypertension over the past 2 years. Again, just prior to starting the injections, I never had high LDL nor High Blood Pressure. Plus, while not painful, I began having extra heart beats which as a nurse, knew they weren’t likely dangerous as they did come through with my wrist pulse. I had a Cardiac workup which showed these to be Atrial Premature contractions. At the end of the day, subjectively I feel this injectible drug was closely associated with: Extreme Stomach pains – not ulcers, as I had 3 stomach ulcers at age 22 & they were removed along with that specific pain. Loss of appetite (I force myself to eat small bland meals); this pain is so deep, no antacid nor Famitodine type med alleviates the deep GI pain. My blood pressure is under control but only while taking BP lowering & Anti-Cholesterol drugs. Over the past year, I experience what appears to be, neurogenic feet & hand tingling. This symptom I know from experience with Diabetic patients, is akin to the spasm in tiny blood vessels that spasm due to varying Blood Sugar levels. I do not have Diabetes nor does my A1C shows higher sugar levels over the past few months.
In summary: I’m not convinced Forteo’s benefits outweigh the potential risks. The Medical Community still does not understand how it works so how can they know, what long-term side effects it causes?

• AnneM February 8, 2017, 5:33 pm

It’s comforting to know a nurse has the same concerns many of us lay people have. I shared with my doctor about my elevated cholesterol, but he dismissed it from being a side-effect of Forteo. I’m convinced that it is. As a nurse, what do you think?

• Vivian Goldschmidt, MA August 8, 2016, 9:10 pm

Good for you, Karen, for making your own decisions about your bone health! I hope your appointment with your naturopath is enlightening and helpful.

62. Tim Tomlinson July 24, 2016, 9:44 am

I broke my leg back in 2007. Discovered that I had osteoporosis from taking the purple pill for about 15 years. I was 53 at the time. After 5 months off work my leg still was not healed. There was zero evidence of healing at the fracture. My doctor was baffled. He told me that he may have to go in and do a bone graft and I would be off work for a year. Then I read about Forteo and wanted to give it a try. After battling with the insurance company I finally got it approved. My first xray a week after beginning treatments showed significant healing and an MRI about 4 weeks after beginning treatment showed complete healing. I was back to work the following week. For me it was a miracle drug, a true magic bullet.

63. Karen Katz July 20, 2016, 5:39 pm

Taking forteo was a horrible mistake. The first thing that happened was the return of severe night sweats. Next came fatigue and a myriad of body pains.Finally the swelling and pain around the injection site despite switching from side to side was really not acceptable.
After reading more about it I regret ever taking it.

• shreen.gutta August 20, 2016, 6:53 am

Could you please give more information about the night sweating. I am on Forteo teraparatide for 1 year. I have started having night sweats recently.

• Kathi Holden April 11, 2017, 10:41 pm

I had night sweats and nightmares on 2 occasions during the first month, then insomnia. I am a nurse as well and really debating if this is worth it!

64. Jeanie Hicks July 10, 2016, 2:37 pm

Years ago I was on Fosomax for several years and started getting pain in my chest, finally got the nerve to stop it and have been trying to use the save my bones regime. I do water aerobics when I can. I am 69 years old and had a complete hysterectomy when I was 37 due to endometriosis. Was on hormone replacement for several years. 2 years ago I turned over in bed and heard a pop in my back and severe pain. MRI etc and showed a compression fracture of t8. Pain subsided after about a month so no kyphoplasty. Last month same thing and now having a kyphoplasty this Friday of t10. This dr who is a spine surgeon and highly recommended has suggested Forteo or Prolia. I’m concerned about either with the side effects .giving myself shots doesn’t bother me. Your advice please. I will have a dexascan in a few weeks. Prior history. I have allergic bronchopulmonary aspergillosis and have been on prednisone 10 mg every other day since 1998. If I lower the dose I start wheezing. History of 4 bronchoscope fir the mucous plugs that develop. Thanks

• Bebo March 27, 2017, 12:34 am

Did kyphyoplasty help?

• Donna August 25, 2016, 11:05 am

After two years of Fosamax and lowering bone density results the entire time, my doctor put me on Forteo a few months ago. I have had compression fractures at T8 and T9 and I also have breathing difficulties. I take 10 mg of prednisone daily, sometimes more if breathing is bad enough. I have suffered no side effects from the Forteo injections. (I wish I could say the same of the prednisone.) I have not been on Forteo long enough to know what the next bone density Scan will show. Praying for good results.

65. Susan Di Cesare June 3, 2016, 6:54 pm

Hi,
My name is Susie and I’m 58 . My T sore is a -4.00! I haven’t seen anyone else in here that bad . I don’t get it and my orthopedic dr sent me to a endocrinologist who is doing a metabolic bone panel and 24 hour urine . I’m now waiting on results and he wants me to go on forteo ! I never even had a dr before except a gyn . He told me not to lift over 10 lbs and that I’m a walking time bomb basically !
Up until 8 months ago I was a runner and a yogi and have been physically fit for years . I don’t eat processed foods, I don’t smoke and I don’t drink any kind of soda . I went thru sudden menopause in 2006 and never took any kind of hormone replacement . I take a calcium and vitamin D tablet everyday . But in the last 8 months I have chronic right side low back pain I’ve packed in 20 lbs and my belly is fat and distended. I don’t recognize myself and I’m scared . I work in retail as a manager and have a very fast paced job.
Any advice? I’m desperate .

Susie

• Sylvia Maffucci August 1, 2016, 1:32 pm

Hi Susie. I am a 58 year old woman who was diagnosed with osteoporosis -3.9 T score at 55 years old. For the past two years I have been on fosamax. Calcium vitamin d. No improvement. In fact worse. Sent to an endocrinologist did blood and urine tests to check if I was suitable for forteo. I am. I swim ski walk with ankle weights paddle board. Etc. I work full time as a high school chemistry teacher!!! I consider myself relatively active and young at heart. first two weeks on forteo. I was a little more tired and felt muscle fatigue but I pushed myself through it. After three months had new blood and urine tests. Went over with endocrinologist. She was very happy. After five months. I’m starting to feel stiff in my lower back. But stretching. Hot tub and massages are helping!!! Injections are simple and the pain of removing a splinter is far worse. I have also noticed some fat gain in my butt and tummy. But I am gonna work through this because I’m too active to have to become sedentary for fear of a fracture. Hope my experience helps. Everyone though responds differently to different meds. Foods etc.

• Judy June 24, 2016, 1:04 pm

My osteoporosis T score was -3
I have a very similar story Susie.. Please check out the Whole Body Vibration machine with the proper supplements and homeopathy I believe you can find an alternative way to reversing your “Osteoporosis” diagnosis. Search for Becky Chambers at vibrant health .com. I am just beginning her recommend regime and feel very hopeful. My doc also recommended Forteo and my intuition tells me not to take it. So, hope this helps! A good book is “Your Bones, reversing osteoporosis…” By Lara ____? On Amazon, good luck! .

• Lorrie August 6, 2016, 3:19 pm

Hi Judy,
I went to vibrant health.com. I don’t know where or how to find Becky Chambers. I’m very interested in what her regime is. Maybe you can copy and paste the link to her. ?
Any direction you can provide will be greatly appreciated.

66. Susan May 3, 2016, 3:12 pm

I am 65 and was very fit until a year ago when I tore and ruptured an L5, was told I had a Cronic fracture also at L5S1 . Then 4 mos ago I fractured L4. Bone test shows I have severe osteoporosis especially in Lumbar T score -.6 and spine -.2.5. My Dr has ordered Reclast but I told her no after reading Drugs.com and Consumer news regarding side effects. Now she wants me to try the daily shots. I have atrial Fib and don’t want the risk. Trying calcium, mag, D-3, C and Zinc, physical therapy aquatics and excercises . I already have pain daily from my injuries.,can’t handle anymore.

67. Sam Zara April 27, 2016, 11:08 am

God damn I feel like I’m in my 70s reading these comments.

I just turned 22 and I have a lumbar T score -4.3
I also have a bunch of other health problems.
L1 compression fracture from 05/18/2015

It’s been a year and I can hardly handle it anymore. How am I supposed to stay positive when 2-3 months turned into 6, 9, and now almost a year suffering from pain 24/7 failing all my classes and can’t work.

I honestly just wish for death, but feel bad for my parents and brother. As my dream of becoming an artist has been crushed into million pieces. Sitting down is impossible as pain is horrible, standing up I can handle it. On Percocet, Adderall, Valium, Norcos, Soma, Xanax, HCG, Gabapentin, Arimidex, nasal spray, inhaler…etc.

No 22 year old should live like this. Fuck osteoporosis and fuck this life. When I saw “Possible bone cancer” I laughed and said fuck it who gives a fuck anymore. Gonna inject for the next 1-3 months and see what happens.

• mingus October 31, 2016, 4:11 am

I wanted to check on Sam… My heart broke when i read your post. No one deserves those kinds of health struggles at 22. I’ll spare you my story, but suffice to say YOU ARE NOT ALONE!! I pray each day for the will to go on, and I’ll add you to that prayer. I believe God has a plan for each of us (although granted a lot of the time, it seems like the plan sucks. ;-o). Don’t give up…I think that’s key!

• YDN August 4, 2016, 3:43 pm

Minimally get off of the Arimidex unless you have estrogen responsive Breast Cancer. Arimidex is one of the worst drugs for exacerbating bone loss / causing osteoporosis other than glucocorticoid steroids (hydrocortisone, prednisone, etc). Some men use this trying to raise testosterone levels, but while testosterone levels may go up ESTROGEN in men is likely more important for bone health than testosterone and the effect of testosterone on men’s bones is likely mediated through conversion of testosterone into estrogen being blocked by Arimidex.

• Linda August 2, 2016, 11:09 am

Hi,
I’m praying for you! Two years ago I was put on Forteo. I took it for five months and then quit because side effects. My side effects included incresed urination, brain fog, and depression, Additional side effects that I consider positive were increased appetite, weight gain of 5 lbs, and regrowth of my hair. I had been on 20 mgs of prednisone daily for years and lost my hair, appetite, bone and vision. After I stopped Forteo, I reduced my prednisone to 7.5 slowly over 1.5 years.
I recently went back to my Dr. and she was very angry that I stopped Forteo and informed me that “You have the worst case of osteoporosis that she had ever seen, and you just lost your best chance at helping yourself.” She
ordered a dexiscan, bloodwork and told me to come back in 3 weeks. My
bloodwork came back great and my
scan showed a 20% increase in bone
density in my lumbar vertebrae and no other bone loss. There was additional bone density in my hips and neck, but
not significant.
I started the Forteo again this week.
The side effects this time to date are a
mild depression, and hot flashes. I will
continue take it if I can tolerate the
side effects. It is better than ending up
in a nursing home from fractues.
I wish you well, and pray that your recovery comes quickly.
I excercise, eat healthy ( if you don’t include sugar), and maintain my calcium and vitamin D levels without supplements.

• Jenni October 26, 2016, 12:39 pm

Thank you all
But especially Linda because you gave me the strength to start my Forteo today when the nurse comes
I am not thrilled with any Side effects
Enough Of them I already have!
But if this can build bone.
It will be worth it
For me I hope it does!

• Cher July 24, 2016, 12:13 am

Hi, my name is Cher. My story although different seems closers to yours than anyone else on here. I am 32, I had ovarian cancer at the age of 26 and went through menopause after hysterectomy and treatment. I have osteoporosis and have for years. Nothing else has worked and I have started to get fractures. Not in my spine yet but just had another dexa scan and I decreased by 13%. My T score is really bad. I’m starting forteo next week, I mean what other choice do I have right?

• LYNN STRONG July 22, 2016, 2:01 pm

I FEEL THE SAME WAY SAM. ONLY I’M “NOT” GOING TO PUT THE FORTEO IN MY BODY BECAUSE OF READING THE SAME THING YOU MENTIONED, POSSIBLE BONE CANCER!!!
I AM IN SOME SORT OF PAIN EVERYDAY. EVERYONE OF MY VERTEBRAE HAS A COMPRESSED FRACTURE, I HAVE LUPUS, AND HEART AND LUNG PROBLEMS! YEP, I’M A MESS AND I SOMEHOW MANAGE TO GET UP EVERY MORNING AND MAKE IT THROUGH ANOTHER DAY.
I FOUND A DR. THAT USES THE LIVE XRAY MACHINE THAT SHOWS HER EXACTLY WHERE TO INJECT MY BACK AND I HAVE HAD FANTASTIC RELIEF. IF YOU ARE INTERESTED IN TRYING THIS, LET ME KNOW AND I WILL GIVE YOU THE DR ‘S NAME AND WHAT IT IS CALLED?
PLEASE HANG IN THERE, YOU NEVER KNOW FROM ONE DAY TO THE NEXT WHAT COULD HAPPEN.

• AnneM February 8, 2017, 5:53 pm

Lynn, I am very interested in these injections you are getting that help. Also, would like to know if you are taking any other pain meds along with them or whatever. I’m having a very difficult time each day staying mobile, a lot of laying down to keep out of pain.

• CAS July 27, 2016, 8:49 am

9 years of clinical cases in human, only 1:100,000 chance of getting bone cancer.(0.4:100,000 in general population…)
http://en.wikipedia.org/wiki/Teriparatide

Teriparatide has a theoretical risk of osteosarcoma, which was found in rat studies but not confirmed in humans.[1] This may be because unlike humans, rat bones grow for their entire life.[1] The tumors found in the rat studies were located on the end of the bones which grew after the injections began.[11] After nine years on the market, there were only two cases of osteosarcoma reported.[6] This risk was considered by the FDA as “extremely rare” (1 in 100,000 people)[5] and is only slightly more than the incidence in the population over 60 years old (0.4 in 100,000).

• PJ July 12, 2016, 3:31 am

I’m 38 and was first diagnosed w/ osteoporosis around 26, when I got compression fractures in T4 and T6, and something in lumbar but I forget which because it wasn’t diagnosed until years later. I’ve taken Fosomax and Actonel, neither did anything to increase scores much and Fosomax in particular messed with my stomach a lot.

As of a week or two ago my lumbar T score is -3.2, Z score is -3.1
Hip Neck T-score is -2.6, Z-score -2.2.

I’m including Z score because I’ve been told by the PA I met recently that due primarily to my age (?), the Z score is the more accurate measure.

I have been prescribed Forteo and want to try it very much, but am currently figuring out how to be able to pay for it. There is no known cause for my osteoporosis, but I bet there is an unknown one. I posted you also have very low bone density for your age, a rare thing, and we share a medicine.

I’ve been on Adderall also since roughly 21, long enough that it could theoretically be a contributing factor (I’d been on it 5 years when I had my first fracture). I briefly had a gabapentin rx, but only for a month when it wasn’t as powerful as what I was already taking (marijuana daily and phenibut 2 or 3 times / week).

If you don’t mind me asking, how long have you been taking adderall?

• Cher July 24, 2016, 12:15 am

Forteo doesn’t tell you this but they have a co pay program, you have to ask for it. They never deny anyone. It will cover the go pay that your insurance doesn’t!

• sara June 24, 2016, 3:40 pm

People your age do not simply develop this disease without an underlying problem. If it is due to an eating disorder, then nothing can help, until until you get the help you need. Same goes with other medical conditions. You don’t say the reason for your density problem, but whatever the cause, Forteo could relieve some of your bone pain and give the time needed to address whatever the underlying cause might be. Good luck to you.

• Nourah June 11, 2016, 7:10 pm

Be optimistic… Pray and ask Allah (god).. He created you and can recover you..

• Buffalo Bill July 8, 2016, 3:07 am

Only in your dream world I am afraid. There is absolutely no proof whatsoever of the existence of a god let alone that he created us.

• B. Ford December 4, 2016, 2:37 am

Mr. Buffalo Bill – Mind your business! And can you prove that there is no God? No? I didn’t think so

• Esmeralda December 16, 2016, 12:22 pm

B.Ford, can you prove there IS?

• Me September 13, 2016, 2:42 am

Bill my heart goes out to you God is real I know because I have a personal relationship with Him. I cannot convince you of anything but I would encourage you to invite Him into your life He will not disappoint you. John 3:16

68. Wendy April 23, 2016, 4:21 pm

I have been on Forteo for about 6-8 months and haven’t had any side effects. I have had a hip replacement 6 years ago and I do have spasms there and pain when I walk on and off. I have my check up and I am going to ask if the forteo is causing this..?
I watch my grandchildren full time and it is starting to limit
Some activities with them,!
If she says no, then I guess I have to contact my orthopedist and find out what is going on!
I am confused by many of you saying you have been on it for years! I was told I can’t be on it any longer than 18 months! After that I will take a pill once a month, prob Fosamax or perhaps something else to solidify the bone
That the Forteo made but is in a soft stage. I will do that for 6 months.

• derk borkent April 26, 2016, 10:43 am

Hey Wendy don’t pay to much attention to the diagnosis your doctors will give you because a hospital specialist told me that I had reumatoid arthritis in every bone and joint in my body from my big toe to my collar bone. I developed this supposebly during the same four weeks as when I was taking forteo. He suggested treating me whith some kind of hormonal drug, which I refused! I asked for a prednizone injection instead. “this drug actually weakens the bone long term” but it it got rid off 98% of the pain and symptoms. It almost seems as if the doctors are agents for big farma.. one drug helps one problem but creates a worse problem(s) so you take another drug to fix “that” ailment etc etc ……………. good for business. Don,t be fooled, most doctors don’t like to admit the humble patient might be right. I’m still keeping my fingers crossed it hasn’t damaged my body permanently.
wish you well. Derk

69. derk borkent April 19, 2016, 8:05 am

interesting report.
I took forteo for 28 days After 2 weeks I had pain everywhere, but my support team told me to carry on as this was a normal reaction. After 28 days I was in agony, except for my back, every joint and bone in my body was so painful I could not get out off bed without assistance. I told my support team from ausy to keep their forteo and stick it. She almost sounded disappointed that I wouldn’t continue with the treatment, never mind the excruciating pain I was in. Maybe I was not properly crippled yet (I could still talk and use the phone) After 2 months I am still not quite without joint pain yet but slowly coming back to normal.
I have not heard from the forteo people since I called them to see how I’m doing! Probable to scared for a law suit.
So for those thinking about taking this shit! Be careful!!!
Good health!

• Michele October 15, 2016, 8:49 pm

Hi I have been on Fortao for 7 months the last 5 months I have been feeling so terribly bad, every bone, joint in my body hurt I could barely walk could not get out of bathtub, couldn’t sleep because I hurt so horribly . I felt like I was becoming crippled did not realize that the Fortao was doing this, until I looked up the side effects. I believe in another month I would be in a wheelchair. It would take me 15-20 minutes to walk from my car to my job. I started taking a 6 day prednisone pack which I know is not good but I feel much better , I was at the point where I felt completely depressed and just wanted the crippling to stop. I have no idea what is going to happen when the prednisone wears off its a awful feeling to become crippled. I have quit taking the Fortao for 3 days now.

70. Susan Heath April 17, 2016, 11:04 pm

My mother took Forteo shots during it’s trial period. I was horrified to read on the initial flyer inside the prescription leaflet that Forteo caused cancers including leukemia. Sadly several years in later in 2007 my mother came down with Stage 4 Lymphoma. She died in 2009 of Lymphoma. I’ve always wondered if the Forteo shots caused or contributed to her death.

71. kirstin March 29, 2016, 1:31 pm

I took Forteo for two months in 2006, all my insurance would pay for at the time. While I agree that diet, exercise, balance training and supplements are essential to preventing bone loss, PTH is THE ONLY osteoporosis drug I would take other than calcitonin (very ineffective, though also inexpensive – a hormone derived from salmon), or hydrochlorothiazide (a calcium-sparing diuretic commonly prescribed for blood pressure). We know that PTH works in humans in its longer-chain form because we make it ourselves; the mechanism by which it stimulates bone, although not understood, is a process of our own bodies. The rats used in the study were from a germ line prone to bone cancer. Humans have not shown an increased incidence of bone cancer since the launch of Forteo. Unlike bisphosphonates, it does not accumulate in bone; once you stop taking it, it clears the body within days. Although made by bacteria genetically modified to produce human PTH, this drug is organic as opposed to synthetic in nature. I haven’t pursued a new prescription because its effects recede after treatment, as also happens with bisphosphonates, and, at 44 with mild to severe osteopenia depending on the location, I hope a better answer comes along. If I had a nickel for every doctor who prescribed Fosamax… But, conversely, if I’d refused antibiotics for every Strep or ear infection, I would be long dead by now.

• Sissybeans May 16, 2016, 12:15 pm

I was given to understand that Forteo is synthetic. I do not understand anything about that but my bones were SO BAD -4 or however it is measured. Had a compressiomn fracture already. All I did was twist a little…plus, I had cancer (2004 treatments radical chemo/radiation) and the treatments kind of toasted my bladder (among other things including bones but we don’t have enuf room to go there) so I couldn’t take anything else. I am finished with Forteo in October of this year. I do have an odd thing going on. In my back there are two places that feel like something is scratching on the INSIDE! I have told Everyone and had x-rays but no one can find anything! Anyone else had this? Thank you for letting me speak this! They say I am safe from bone cancer. So, who to believe?
Dweezilbeans

72. Angelica March 24, 2016, 11:28 pm

I have been on Forteo for three months. Like many of you, I have the same fears. I did get a second opinion about Forteo from my internist. He recommended I take it. My Gyn prescribed it. I was on Reclast previously and Actonel before that. The Actonel gave me severe acid reflux. I’ve been on medication for acid reflux for three years. The Reclast did not help my spine as well as my doctor had hoped. My score went down to a -3.1 after being off of the Reclast for a year. I’m fortunate in that I do not have any side effects from the Forteo, however I did notice (as well as my hairdresser) that my hair is not growing as quickly as it was before I started taking the Forteo, which I plan on telling my Forteo representative.

73. Rebekah zilch March 24, 2016, 5:38 pm

January 9th 2016 I suffered a t11 compression fracture while on my way back home to Illinois from San Juan. The result was 3 weeks of trying to get test results from a Kentucky emergency room to my orthopedic doctor here. He immediately referred me to neurosurgery. The new doctors office has an osteoporosis Doctor onsite and a clinic. Post surgery ( vertebroplasty) I was referred to the osteoporosis clinic as my bone density is -4.987. I’m 42 years old. 5″1
Mistake now. This drug has me a basket case. Called my doctor and they dismissed my concerns entirely and said to stay off the internet !!!!

• Rebecca Culp August 14, 2016, 7:58 pm

I am 61. I had a complete hysterectomy when I was 34 due to endometrosis. The dr.said no hormones because of the “cancer’ scare. I went into immediate ‘change of life’. Hot flashes, mood swings, weight gain.At the time I weighed 100 lbs. My bones started deteriorating .I stayed with this Dr. For 13 years. I thought he was a good Dr. I am almost crippled. My Osteoporosis Specialist that I now see says that I can break my hip by just sitting. The fosomax, prolia, and Reclast are all A big Joke. I have tried those. Forteo is my only hope. I will be using it . I used samples in 2013 and will use a year and a half . I have to. I have no choice. I was once a very active and vibrant woman. This disease is not taking me down. There is more and better medicine coming down the pipeline . She is on my side . I trust her. If I had it to do over I would have demanded estrogen when I had my hysterectomy . My pain when I stand for only a few minutes is really bad. I can do this. I want my life back.

• Christy Smith August 24, 2016, 7:23 am

Rebecca, I am so sorry for your pain and understand it. I am 53 and also was thrown into osteo due to a hystertomy. My dr. Told me I could roll over in bed and fracture a bone. Horrified by it I chose to take Forteo sfar other drugs did not work. I have completed my 8th month and happy to say my pain in spine, hip and pelvic are so much better!! Almost gone actually! I am having some issues now with head pain and neuropathy. I have have had so much blood work and even gone to neurologist who wants to do a spinal tap and MRI on brain. I have seen my intergrated Dr and she seems to think it is side effects from the drug. She told me to back off of it for a month to see if my symptoms gets better. I am doing that now. I would take the drug if I were you. You cannot just continue to crumble. Good luck!!

• Joy July 2, 2016, 4:45 pm

I to have fractures in spine but due to accident. Had a major spinal fusion and after long study of drug I decided to go ahead with it. I was told that if any part of my fusion failed due to non healing of bone, it increased my chances of doing surgery again. I started Sept 2015 and was planned for 2 yr course. I discontinued this month (June 2016) due to side effect of chest pain, tightness, and jaw pain and a few other quick onset side effects. The care team told me the side effects would go away soon, its been 15 days and effects are less but still having, they want me to restart but im not going to. If the drug did its job I should be well healed by now anyway. It wasn’t worth the chance of not healing so the other very scary possibilities didn’t matter if I didn’t heal well and my quality of life was bed ridden. I am physically doing great from fusion and the other symptoms will go away. Unfortunately we have to weigh our options at times. I will pray that you find the answer that best fits your life.

• Karen June 30, 2016, 2:07 pm

Rebekah,
HRT throws a red flag. Do not take HRT; it causes breast cancer. My best friend is proof; watching her suffer through dealing with breast cancer, and knowing for a fact the HRT caused it was horrifying. Doctors should NOT prescribe HRT to anyone, but rather encourage alternatives. Find another way. Best of luck to you. God Bless You.

• Lillian Parker March 27, 2016, 5:49 pm

I have been taking Forteo for 4 months now. I have noticed increase indigestion, joint pain in both hips, and severe chest pain. I didn’t know if any of this was Forteo, but after reading this, then it all makes since why I have been having these symptoms. I hope this helps.

• Tammy July 24, 2016, 7:27 pm

Have your side effects improved or remained the same? Thanks for your response!

74. Zulaikah Sulaiman March 23, 2016, 4:50 pm

After being on this medication for 6 weeks, I took myself off as of today.
I’ve lost 20 lbs from being chronic nauseated. I had stomach cancer in the 90’s they removed 2/3 of my stomach fixing it so I could no longer throw up. Well my nausea been so bad with this medication I’ve been throwing up. Which I’ve been unable to do since my stomach surgery.
My body temperature at night time is so bad i’m unable to sleep or get any restful sleep. Waking up every 30 minutes.
Top it off my blood pressure got so high i was in the stroke zone rushed to the ER in an ambulance with my BP 202/101 pulse 120. I’m now on BP medication. Which I will stop after I feel this medication is out of my system too.
I’ve called my nurse at Forteo an told them not to send no more as well as my Dr. that prescribes it an spoke with her nurse to tell her I won’t be taking it no more.
This medication needs to be moderated more closely when it is first given to a new patient.

75. ac February 11, 2016, 2:20 pm

I stopped this drug after 6 months, felt the risk was not worth the results as five family members had some form of cancer. I currently have trouble sleeping even with a bipap, pain in legs, hips, knees, and shoulders. My fracture at L1 was from lifting a young man from sitting position. Do not think bone density would have made any difference since he weighed 110 lbs and I forgot to lift properly. (Got up in middle of night and did not think of correct lifting measure.)

76. Victor Sardella Jr. February 3, 2016, 3:20 pm

It has has made me think twice about the situation. Lot more research.

• Vivian Goldschmidt, MA February 4, 2016, 11:05 am

That’s fantastic, Victor. It is so important to think and research first before deciding whether or not to take any drug.

77. Catherine January 25, 2016, 7:40 pm

After 5 months on Forteo my bone density tests results show improvement in all categories. I tolerate the medication well and experience no side effects. I am taking a conservative approach and will remain the on Forteo 12 months. This should result in signifiant improvement over what my bone density tests were before i started Forteo.

• jacqui August 3, 2016, 10:16 am

Glad to see a positive & encouraging comment as I commence this medication next wk & I’m nervous ..

78. Marion January 12, 2016, 11:11 am

After two separate falls and breaking my arm in three pIaces, I was diagnosed with a T-score -5.4 or similar and was told they had not seen such a bad T-score result in someone my age (65 at the time). Since I have ongoing stomach problems, they ‘offered’ Forteo. I read your book, which was enough for me to reject this drug, much to the disappointment of some of my family members. I take the supplements, follow as much as I can of an alkalizing diet and do the Densercise Exercises as much as possible, I feel stronger and keep hoping that this will help.

• Vivian Goldschmidt, MA January 12, 2016, 11:25 am

Keep up the courageous work, Marion! It’s hard to go against the mainstream, but you can do it!

79. Christye December 26, 2015, 12:37 pm

I am 45 yo and been very active my whole life. I had a total hysterectomy at 35 due to advanced cervical cancer. I am on inhaled steroids and on/off oral steroids periodically for asthma. I have always been a runner but decided to start running marathons. Last year my first training attempt was aborted due to a stress fracture in my right hip. I had bone density scan done and was noted to have significant osteopenia in my hips despite being on hormone therapy since my hysterectomy. So I started on Boniva. I started training again this year in February but kept my distances low due to asthma exacerbations. I did compete in a couple of sprint triathlons over the summer and did well so I decided to start training for a marathon again. Within 3 months of pushing my distances I developed a fracture in the distal tibia bone (medial ankle). Once again I had a bone density and found my scores were even worse. I have since been started on Forteo at the suggestion of my orthopedic surgeon at the very least to help heal my fracture. We have discussed staying on it even past healing fracture. I have been on it for a month and haven’t noticed any side effects thus far. I almost feel like this is my only hope. I’m 45 and have had 2 fractures within almost a year. All of my dreams of running marathons are likely pipe dreams now but I want to at least stay as active as I can for as long as I can. All the comments and reports on Forteo are rather terrifying. I wonder if there are any other meds in the pipeline that will do the same as Forteo without the side effects? What other choices do I have if Forteo is such a risk?

• Andi December 27, 2015, 1:47 pm

Hi Christye, I just completed 2 years of Forteo injections, I will be 42 next month. I developed osteoporosis after using Depo Provera for birth control, and fractured a vertebra while riding my horse. My endocrinologist put me on a once weekly dose of Fosamax which I quickly decided I couldn’t tolerate – terrible pain in my shoulder into my back, could barely move my arm, and neck got so stiff I couldn’t turn my head. Those side effects went away within a few days, but same results after the next dose. I never have noticed side effects from medication in my life. The endocrinologist decided that since I was only 39 at the time it would be best to try to build the bone instead of trying to just preserve what I had left, and she prescribed the Forteo. As my back fracture healed during the next few months I swore I could tell my back was feeling stronger – it was hard for me to be on my feet very long like standing in the kitchen cooking, etc but slowly I was feeling stronger. After 2 years of Forteo, I am back into osteopenia instead of osteoporosis! I was at -3.5% compared to baseline, and now I checked out at 14.1% compared to baseline. It says an 18.2% improvement. My T score was -2.6, now is -1.4. Very exciting to me! I’m not sure if there is anything else coming along that would have less side effects, but for me I didn’t experience anything more than occasional leg cramps when I tried to ride my exercise bike, which I will not say for sure was from the Forteo. Keep in mind when they mention the bone cancer possibility – the rats were tested at a way higher dosage/ratio than what is prescribed for us. I know people seem to tolerate things differently, but I had success with Forteo.

• Julie March 15, 2016, 12:50 pm

Christye and Andi — Thank you for sharing your stories. I’ve had similar experiences with multiple stress reactions/fractures (3 since 2008) and was just prescribed Foreto. I just turned 44, am pre-menopausal, and am very active. I was training for my 11th marathon when I had another stress reaction in my tibia on December 19, 2015. It didn’t heal as quickly as it should have (even though I was very compliant w/ resting it, etc.), and progressed to a stress fracture (still wearing that $(%& boot). I am determined not to stop running and am desperate to get back to it. I was originally prescribed Foxamax by my internist, but after researching it, I quickly decided not to take it. I just saw an endocronolopgist yesterday who told me that Forteo shows promise with rebuilding bone in pre-menopausal women, and that I’d only need to take it for 6mos to a year. I was hesitant to take it, but given that I was already doing the things we’re supposed to do to have strong bones before this last fracture, I think it’s my best option. Don’t give up on your marathon dreams, Christye — there may still be hope! 80. JT December 15, 2015, 7:12 am I was in perfect health all my life until I broke 2 ribs and had 3 compression fractures of the vertebrae, all non stress related within 2 years. My mom aunts and cousins all have osteoporosis and kyphosis. I am now 58 and just started my 5th month on Forteo and notice swelling in my cheekbone on one side. I went to my internist yesterday who ruled out any infection or sinus problems and told me to stop taking the Forteo until my bone specialist does a scan. She had a patient on Reclast that developed 6 dime sized bone spurs and she is concerned about that. My bone specialist stopped me from all heavy lifting and exercise, except for walking, a year ago. I feel weaker than ever and want to build muscle. I hope the specialist responds today since she has not returned previous phone calls. I am thinking I should just stop and start exercising and getting healthy through changes in diet and reducing stress. Any advice appreciated! • Evie Hodgson April 26, 2016, 4:52 am l was at LAX bending to lift a heavy bag when l collapsed in excruciating pain. l thought l had been shot.! After returning to England l saw chiropractors for 3 months hoping to relieve my back pain. When they said they would not treat me unless l had an x ray. l did and found to my horror, not only had l lost 4 inches in height but l had 5 wedge fractures plus others in my C section (spine) several rib fractures (due in part l must admit by an enthusiastic chiropractor, and had severe osteoporosis. The surgeon was wonderful and ll had vertebroplasty in 5 vertebra and put on alendronic acid. l could not tolerate the pills and they burnt my stomach and had awful side effects. So l was put on Forteo. So much better and yes there are side effects that come and go, nausea being the worst, tiredness and leg aches. l also have been diagnosed with arthritis, degenerative sub articular cysts in my neck vertebra and seem to be ageing quickly.!! (rusty). It seems to have all come at once.! l am 64, been physically active all my life and the difficult part is lifting anything, even a kettle as my spine is teetering in places where the degeneration has really kicked in. l have been on Forteo for 2 years now and just had my bone scan. l feel better in myself (stronger and my bone density has increased by 28% ( It is now -1.9 T score (It was initially when tested T score -3.6. l have hope. Now that l am coming to the end of 2 years on the drug l am now having been recommended by my specialist to have an intravenous drip of Zoledronic acid. So we will see where that goes. l also take an extra vitamin D high supplement to help the calcium absorption. Yes l find this condition absolutely debilitating sometimes and the pain in my hips and spine are so tiring and distracting. l just have to lie down and rest my spine. But l am better than l was and the pain is not so frequent so my spine has got stronger. Hope is a wonderful thing. 81. Donna Baughman November 18, 2015, 2:54 pm I went on Forteo recommended by my doctor after having a terrible reaction to oral meds for osteoporosis. I experienced terrible muscle spasms in my upper chest to the point where I could not walk and barely breath thru the episodes. I worked in a warehouse pulling orders and would have to stop in my tracks until the pain subsided. I had never had that happen before using this drug. I went off after about 5 months of injections, but to this day (7 years later), I still have the spasms when I am tired or have been upright for an extended period of time. I put the blame on this drug and will never take anything for my bones again. Drug companies are only interested in the , not the patient. Done with giving my hard earned money to exchange one problem for another! thanks for giving me a place to vent! Donna • Eric Weisman February 8, 2016, 1:49 am Unfortunatley, I think Donna is absolutely correct about the Drug Companies being interested in$ only. The FDA does not require Chemical Drugs to disclose their ingredient list content, so the Doctor nor the Patient know what they are really using. Sure: There may be package warnings about side effects including cancers and death, but why is the Public not aprised about the Chemical Content of Prescribed Chemical Drugs so they can make an informed decision for themselves before taking Chemical Drug Cocktails. I work in supplement compound technology for internal disease and all the ingredients that are incorporated in the proteins, vitamins, herbs, minerals and enzymes I use are fully disclosed on the labels. Sadly, in my view, the FDA, USDA and the State Depts. of Health work to make it look like they are protecting the interest of the Public, when in reality this facade allows Chemcal Drug Companies to sell products with undisclosed dangerous ingredients that can lead to various forms of Organ Failure, Cancers and Death.
The Chemical Drug Industry sells about 80% of its’ Anitbiotics whichinclude other Chemcals along 85% of all the Steroid Growth Hormones made that come to or are made in the USA to The Meat Poultry Fish Dairy Egg Industry. The Animal Slaughter Industry uses the cheapest forms of protein they can to feed Meat Poultry Fish Animals including their own Sewage, Blood and Flesh Parts that can not be used for Human consumption including Eutahnized Cats, Dogs and Roadkill.
Meat Poultry Fish Dairy Egg Labels do not disclose ingredients and there is a good reason for this: You probably would not eat them if you knew what was in the feed of these poor Animals.
I eat Vegan Veggie Burgers, Veggie Hot Dogs, Veggie Sausages and Veggie Chic’n Patties grilled “Crispy” on the outside. They do not contain Eggs or Dairy. I use Vegan Vegetarian Pet Foods for my Dogs and Cats and woud never trust a Meat Poultry Fish Slaughter Co. to provide my Family with anything, much less the Chemical Drug Industry. I have eaten strictly vegetarian substitutes for Meat and Poultry Products along with salads for over 40 Years.
I have no health issues other than a back injury I sustained in a 2014 Car Accident and it has improved. I have no High Blood Pressure, No Hypercholesterolemia, No Osteoporosis, No Cancer and I weigh the same as I was in my 20’s, but my physical performance exceeds and intellectual capacity exceed that of what I had in my 20’s. People tell me I look like I am in my late 30’s to early 40’s, but I am in my 60’s. You can see me, Eric Weisman, speak on u-tube at the World Vegan Summit last March. I will be speaking at the Green Planet Festival in Fort Lauderdale on Feb. 27th, 2016. I hope to see you there.

• Tanuel December 25, 2015, 7:58 am

I took forteo and almost had to have parathyroid surgery, but refused to have surgery, after being off forteo a long enough time my numbers returned to normal. It caused a high calcium level in my blood stream. Causing me to be very tired ALL the time. I called Eli Lilly and they did not seem interested even though there is a parathyroid harmone in the drug I was told by their pharmacist. I wish we could get it off the market. I have never taken drugs, till I took forteo I will not take any drug again I will stick with healthy foods and water and minerals. Tanuel

82. Eric November 14, 2015, 1:27 pm

My T scores after breaking my left leg at the tibial plateau were measured at -1.0 to -1.7 and I predicted my t scores before my Primary Physician even told me what my scores were, would average out at -1.5 due to the fact I was taking Phenobarital for epilepsy for years before I was finally tested for my DEXA scan, which should have occured when my neurologist and primary physician when the put me on Phenobarbital, but I was never tested until I fractured my left knee at the tibial plateau, I have cronic nerve pain now below the ankle, am taking what anyone would call massive daily doses of nuerontin for the nerve pain, and still suffer break through nerve pain that never really ends. Lyrica is out of my financial reach, but works well in dealing with my pain. My observations are that DEXA scans prior to prescribing Dilantin and Phenobartal and all other antiseizure medications is a matter of The Standard’s of Care that all physicians MUST adhere to or risk the facts of being sued for Medical Malpractice, to be filed against you and your practice. Heed this advice, my physicians really did me alot of real harm, don’t let this happen to you, demand a DEXA scan before you let your Dr. ruin your health with antiseizure medications. Unforetunately for me and my Doctors, the damage is done, now it’s time for the lawyers to step in, on my behalf.

83. Lisa October 27, 2015, 1:33 pm

I am a 55 year old female who has had stage 3 breast cancer, broke my ankle and had surgery five years ago and am going through PT after a femur bone brake that now has a rod and pin. I do have osteopena and have gone through menopause due to the cancer. I also have esophagitis.
My orthopedic doctor has stated he wants me on the Forteo. I am not sure that it is the right drug for me. There is the two major breaks in 5 years that is concerning.
Lisa

• Teresa March 5, 2016, 3:20 pm

If you have had cancer don’t do that drug.

• Elsie November 24, 2015, 1:14 pm

I am a 91 year old female who has been very active all my life. I had been taking boneva for several years and when I developed femur pain my doctor took me off it. 2 months later I broke my femur. I think it broke and that is why I fell. I now have a rod and 2 screws in the femur. I have just been taking calcium since then. I fell 5 months ago and broke both bones in my wrist. Recently had a bone density test which showed a lower score. Dr. wanted to put me on prolea, but after reading side effects was the same as boneva. I’m not sure that forteo is any better. All have bad side effects.

84. clemmons October 26, 2015, 8:12 am

After 2 months of Forteo experienced extreme joint pain and muscle weakness, debilitating nausia and vomiting.

• Me September 13, 2016, 3:04 am

I’m into 6 wks of Forteo horrible leg and hand cramps, cannot sleep, migraines with a vengeance, dry sore mouth
Dr has taken me off for a week to see if these issues clear up. I am praying for guidance I want quality of life

• amc3smith November 19, 2015, 2:21 pm

What did you do? Did you stop taking the Forteo? Did the side-effects go away? How long did it take?

• Luann December 1, 2015, 10:22 am

I was on Forteo for four years. . I had good months and I had bad months. 13percent of my lumbar spine grew back. I am no longer at 69percent. Now at ostepenia. The daily shots were easy to do but many of the side effects were bad. Some days I couldn’t get up and would crumple when I did. I would get nauseated some months for entire month. I would be dizzy often. I had what I call traveling pain. My pain would pop up in a different area each week. Or move from one joint to another in a day. Get into the Bone Girls Club online and on the Osteoporosis blogs. You will find many other people to talk to about all of this. Good luck. I would do it again.

• amc3smith November 19, 2015, 2:19 pm

What did you do? Did you stop taking the Forteo? Did the side-effects go away? How long did \it take?

85. Lawrence October 10, 2015, 5:51 pm

Vivian,

I was on Forteo for 2 years and it did help my T-Score. Then the doctor put me on a bisphosphonate – alendornate. He said that if I did not take it I would loose the improvement from Forteo that I got and all that money would have been wasted. Forteo benefits fade away unless you take a bisphosphonate. Is that true. Is that that way to go continue with a bisphosphonate or is your save our bones program with calcium better from here on. Which direction should I take? Please advise.

• Christine October 11, 2015, 1:26 pm

Thank you for your input. I am on a 3 month trial of Teriparatide injections. I feel ill, sick dizzy heart palpitations and my concentration is poor. I am that close to quitting. Knowledge that medical authorities admit that they do not know how it works is helping me to decide. Your comments are very helpful.

• Vivian Goldschmidt, MA October 10, 2015, 7:12 pm

Hi Lawrence,
Osteoporosis drugs can sometimes bring up a T-score, because they measure bone quantity, not quality. The problem is that the bone may be denser, but also harder, dryer, and brittle because the density came about as a result of disrupted bone remodeling. (Shedding old bone cells is vital for bone integrity, and drugs stop that from happening.) Of course, no one can make the decision about which path to take except you – but you are clearly doing your research, so you can make an informed decision.

• Christine October 11, 2015, 12:57 pm

Thank you for your thoughts.
I am on a 3 month trial and have been injecting Teriparatide every day for exactly one week today.
Apart from multiple fractures I am quite fit. Or rather I was. Now I feel quite ILL. You have reminded me regarding quality not quantity of my bones. I also feel sorry for any living creature given bone cancer on behalf of research. I look forward to the day we do not have to do this.
Again thank you I feel I might not run the full three months. Everything is telling me this is not for me. The choice of a possible fracture or risk however minimal is making up my mind. Christine.

• Vivian Goldschmidt, MA October 12, 2015, 11:27 am

Hi Christine,

I want to encourage you to listen to your instincts. No one knows your body or your health like you do.

• sharon November 5, 2015, 9:20 am

I have osteopororis and Paget’s
Dr wanted me to take Forteo – said that was the only choice.
Had the shots twice a year for
two years and Actonel before that. Actonel helps with the Paget’s but not the bones. Anyway after consulting with a couple other
Dr’s and reading up on it decided against taking the Forteo and am back on Actonel. Do I have any other choice – if it weren’t for the Paget’s would try your program for the bones. ????

86. marcella August 30, 2015, 8:33 pm

I’m 54 year old female who went through menopause at 34. After 10 years of hrt, started reclast, my bones continued to diterate. This year’s scan was T=-3.9, I was immediately prescribed forteo. I’ve been on it 4 weeks and have bad bone pain and fatigue but worth it if I can go back to jet skiing and being active!!

87. Barbara July 20, 2015, 9:19 am

I was on Forteo injections for 5 1/2 weeks and that was over two years ago. Since then I have had an acid taste in my mouth constantly. My dentist pointed out that it is ruining my teeth. I have had more dental appointments in the last 2 years than I have in my life. I am going to see my Primary Care doctor asap and then possibly a cancer/bone specialist.

88. cyndy July 18, 2015, 11:44 pm

My Mom is 88 and has been taking Forteo for 3 months. She has osteoarthritis, and she has just had a massive flare up. She has not had this level of incidence since she went through menopause.
Does anyone else have any experiences like this? She has no other changes in meds or activities or diet.

• Nora December 4, 2015, 11:41 pm

I was put on a three month trial of Forteo. Although I do not have osteoporosis I had an atypical femur fracture which is still not healed after more than 2 yrs . Also had triple arthrodesis ( fusion) of my left foot in two surgeries at the beginning of the year, also not healed. After one week of Forteo I was taken off it due to a massive flare up of rheumatoid arthritis unlike any I had ever experienced: massive swelling and pain in joints never before affected and particularly my wrists, hands and knees.

• Kathleen April 2, 2016, 5:20 pm

I was on Forteo for 5 1/2 months. While on it, my calcium levels peeked, and I developed severe pain in my shoulders, wrists and hands. This pain was identical to pain I had about 9 years ago and was identified as pseudo gout. It’s not gout but calcium crystals in the blood that attack joints. While I had it, and it was very difficult to get rid of, it attacked my knees and all joints in my body
Did any doctor diagnose your problem
I’m just wondering. My doctor wouldn’t even address the issue
I’ve been off Forteo now 4 months and feel great

89. Dennis July 14, 2015, 12:27 pm

45 year old L1-2 spinal cord injured paraplegic, 30 years post injury. Suffered a right femoral fracture during PT stretching.

T Score for left thigh is -2.3. Hip is -1, Spine and Forearm are normal.

Dr wants to put me on Forte for 2 years.

Dr does not have much experience with SCI patients and this treatment. Mostly works with Post Menopausal Women. Anyone have experience with my type of situation? The mechanism of bone loss in my case is different than age related bone loss.

90. David B. Karpf, MD July 11, 2015, 12:22 am

Your blog is an excellent example of fear-mongering and selective choice of information. You may think you are “helping people”, but you are not. Forteo is not the best choice for all patients, but it remains a good choice for some patients, and has a very acceptable benefit/risk ratio if used appropriately.

• Camille December 9, 2015, 8:38 pm

I have been on Forteo twice for 2 years. The last round was about 6 or 7 years ago. My doctor wants me to use it again but I am just really afraid to. Any advice? You seem to think it is a safe drug. thank you
Camille by the way I am 64 years old

• PJ July 12, 2016, 3:23 pm

The instructions say not to use it for more than a total of 2 years in your life. I’d mention that to your doctor.

• Tanuel December 25, 2015, 8:52 am

I developed difficulty in swallowing and they wanted to do parathyroid surgery on me I had a high calcium count in my bloodstream which is an indication of parathyroid problems I went off Forteo and the blood calcium returned to normal good thing I did not have surgery. I still have a swallowing problem. Take care to correct any problem with good food ,akaline water and minerals for a start.

91. Deb Ard RN July 3, 2015, 2:26 pm

I am a 62 year old woman who 8 years ago was diagnosed with severe osteoporosis after numerous ankle/wrist fractures whose pain I had dismissed and ascribed to “getting old”. I then tried oral alendronate that, after 3 months, nearly killed me from an esophageal spasm that shut down my airway completely, I am a registered nurse and was at work in a hospital when I suddenly could not breathe. Had i not been close by to immediate medical attention I’ve no doubt I would not be writing this now. Also, being an RN, I was careful to take the alendronate exactly as directed—it still nearly killed me.

My physician urged me to try Forteo as really, that was pretty much the only other option for severe osteoporosis repair. We reviewed the clinical trials, including info about the common side effects and possible severe adverse effects including osteosarcoma. Longer term use of Forteo increased the likelihood of bone cancer, but, interestingly enough, the most benefit of the drug is within the first six months. The benefits continue a bit afterwards, but the risk increases as well.

We already had a baseline bonescan–I had extreme bone density loss despite being an active athlete and equestrienne. I started the daily injections of Forteo and was followed VERY closely by a nurse case manager from that company–had to check in with her weekly. I did have some minor initial side effects–nausea mostly–but they disappeared after the first two weeks as we thought they would.

At the four month mark I had another bone scan and had a 4% increase in bone density! The bone pain that I thought was “just arthritis” before taking Forteo was gone and had been gone since the first month of injections. My MD and I decided to discontinue the Forteo at that time–somewhat from a risk perspective, mostly because it had already done what it claimed it would do.

If you are prescribed this medication by your doctor as a last resort as I had been, go and try it. Show your MD this post even–you do not need to take Forteo for 2 years! I was lucky in that my insurance covered it, but, honestly if I had known initially that this drug would do what it promised and that I would have no more pain nor have any more fractures, I would have borrowed the money somehow to cover the first four months.

You are all correct, it is expensive but very very worth it.

• Linda Q October 27, 2015, 2:21 pm

I’m glad to know I don’t have to stay on it for 2 years, had some joint pain and muscle spasms, but after 4 months, this seems to have settled down. Just wondering if Medicare will cover second bone density scan at 6 mos, does anyone know?

• Georgeanna November 11, 2016, 8:34 pm

If Medicare won’t pay it, I found out the cash fee is around $200.00. I believe all insurance only pay for the test once every two years, but I want one in December, after I’ve been on Forteo for six months. If insurance doesn’t cover it, I’ll pay for it. I’ve had six broken bones in my Spine almost all at once. Had first four and then the last two. 92. Lailani June 8, 2015, 6:34 pm At 32, I had fractured both hips, multiple times, both feet countless times, other little fractures here and there. I was constantly in some sort of broken state. Since I wanted to have the option to have children, my doctor prescribed Forteo, as it doesn’t stick around in the body for a long time. My doctor personally spoke with and wrote to my insurance company after they rejected the payment for the very expensive drug and they agreed to cover it. I took the daily injection for 9 months. It has been 5 years and I haven’t fractured a bone since. It was worth the risk for me – a tiny chance of horrific side effects for the opportunity to walk around, unbroken for the rest of my life. • Suzi June 14, 2015, 8:17 pm Why did you only have to take it for 9 months and not the 2 years? I just started this week. Never had a broken bone in my life until a boating accident last Thanksgiving. Found out I have osteoporosis and am not having a smooth time remembering to take it or put it back in the frig! • Deb Ard RN July 3, 2015, 2:31 pm You and your doc should discuss this. You do not necessarily need to take it for two years–that is solely the mark where the risk may outweigh the benefit and, actually, the first few months of Forteo gives the most benefit to your bone density. The benefit tapers off from the six month mark the longer you use it though there still is a benefit. 93. Caroline May 11, 2015, 4:32 pm I am a 75 year old female. About 2 years ago, I fell and broke my hip/femur (or broke my bones and fell). After surgery and during recovery in hospital/rehab centers, I was prescribed forteo. The price of this medication is now out of sight. My medicare supplement insurance will not pay since I am in the”coverage gap” and the cost is over$2000. The gap is not just financial but also a barrier to getting this medication. An important side effect of taking this medicaton that needs to be listed is POSSIBLE BANKRUPTCY. What options do I have?

• Me September 13, 2016, 3:18 am

Call Lilly cares perhaps they will donate the meds also the needles and pen. It’s all according to your financial need. I pay O thank God and the Lilly co

• Tanuel December 25, 2015, 9:04 am

Be glad you did not have the funds to take it, the side effects are worse than they say. I take minerals and try to eat properly and have excess energy now and I am 74 years old. Still have the swallowing side effect. Hope to keep working on it and hope the swallowing improves as time goes by. Sorry I took it. First time I ever took a drug. Last time I will do it hopefully. Tanuel

• Luann December 1, 2015, 10:29 am

There are outside agencies that will help with your expense. In fact Eli Lilly paid the largest percentage of my 2 year use. Get a hold of them. Or have your doctor call them to say you have to use this drug. I couldn’t have afforded the $1800 a month use. But 2 years was covered completely. • Linda Q October 20, 2015, 3:15 pm Caroline, I’m 65, at last count, had 39 fractures in my body, was averaging 3 a year. I’ve been on Forteo about 6 months, no fractures yet, but too early to tell if it’s due to Forteo or just being more careful. Just about all the major pharmaceutical companies have Patient Assistance Programs, in which they get you the medication free or at a reduced rate. You might want to check with Lily and see if this is available. I’m very low income, so copays are not a problem for me. But, back when I was still working, I was able to get Celebrex, which was very high when it first came out, for free. • Vivian Goldschmidt, MA May 12, 2015, 4:29 pm Dear Caroline, I am sorry to hear about your hip fracture and the pain you are experiencing. Remember – you always have options! Whether you choose to take Forteo or not is entirely your decision. It’s you, not your doctor, who will be paying a great deal of money and experiencing any side effects. No one can “make” you take a drug you aren’t comfortable with! 94. Nancy N May 1, 2015, 7:29 am I am a 62 year old active female. In January 2015 I was diagnosed with severe osteoporosis in my spine and right hip. Doctor prescribed Forteo. My insurance company (Florida Blue) has denied coverage twice, so I am now self paying$2000.00/ month. My husband and I are both retired and I am not eligible for Medicare. Forteo Connect will only help with reimbursement after what my Florida Blue pays. But because my insurance has denied coverage twice, Forteo Connect will not help with any reimbursement. Where is the sense in this?? My T score is -3.6 and I have broken ribs and toes just thinking I was clumsy. I am now on a weight lift and activity restriction which has dramatically effected the quality of my life. Anyone else have trouble with insurance or Forteo Connect??

95. A F April 30, 2015, 2:57 am

I’m an early 40’s male that had 2 Parathyroid Adenomas removed. The Parathyroid condition left me with multiple spine fractures and Osteporosis -3.5 T-Score. Been taking Fosamax for 6 months and only saw a 0.2 point increase in hip/spine density. Forteo has been recommended. Not sure what to do. Also have intractable bone pain.

• Vivian Goldschmidt, MA April 30, 2015, 9:52 am

Dear A.F.,
You are already on the right track – you’re doing your research! I encourage you to take full advantage of the free information on this site, and look carefully into Forteo and Fosamax, and gather all the information you can. Good luck!

96. Jenny April 6, 2015, 7:12 pm

I took Forteo about 4 Years ago, since then, I have been diagnosed with Vasovagal Syncope Syndrome, which is a slowing of the heart which can be triggered by just about anything. I have had about 6 episodes and have been in the hospital on all those occasions. When the heart slows, your blood pressure drops low and you go unconscious, not a fun thing to live with. I have read that there have been other Forteo users that have been diagnosed with heart problems since taking it. I am curious what the data is.

• Christine October 11, 2015, 5:42 pm

Hello this evening I decided after only a week of taking Forteo, that the side effects are unacceptable and one of these effects is the increased rhythm of my heart. I am not going to inject tonight. The un-natural way the bones get ‘stronger’ I don’t like.
Dizziness sickness and generally feel ill.

97. Mahendra March 27, 2015, 10:02 am

My T score ios -4.2, started taking Terifrack by intaas. 3 fractures in spine, one shoulder dislocation, and other minor fractures at some places.

98. Danny March 9, 2015, 9:08 pm

I am looking for some ideas for my wife who has osteopososis (t=2.8). This is caused by taking the blood thinner warfarin for 21 years because she has a mechanical replacement heart valve. Many people may find themselves in this same dilemma. Vitamin K is at the root of it. In order for the blood thinning to work, vitamin K must be in scarcity, so you can’t eat a lot of healthy greens. When the warfarin puts vitamin K into scarcity, the liver makes less of the clotting chemicals so the blood is thinner, but it also makes less of the proteins needed to bring calcium into the bones, so they get progressively weaker. All the normal prescriptions for exercise and healthy living will not work to maintain bone health if the calcium bearing proteins can not get to the bones. What to do? I thought Forteo might be an answer, but it looks bad.

• Vivian Goldschmidt, MA March 10, 2015, 9:02 am

Hi Danny,
First, I commend you for doing this research on behalf of your wife, and gathering as much information as you can before ingesting osteoporosis drugs.

Warfarin can be considered one more acidifying drug, so following the 80/20 balanced diet (as described in the Program) is a perfect solution. Believe it or not, even people taking bone-depleting drugs like corticosteroids have been successful while on the Osteoporosis Reversal Program. You and your wife can check Real Life Success Stories here:

https://saveourbones.com/testimonials/

99. Kim March 8, 2015, 11:51 pm

Know that I’m going to be given Forteo as a solution. Seeing endocrinologist tomorrow due to major bone issues caused by Actonel
8/10-4/10 took Actonel as osteoporosis preventive.
Medical issues:
1/12–fell, fracturing L3
4/12–left jaw dental work
8/12–fell, breaking left shoulder
10/12–left jaw, dental work
11/13–spontaneous fracture of right femur
4/14–removal of all molars in lower left jaw due to jaw deterioration
7/14–spontaneous fracture of left femur
2/2-left hip began aching as leaving airport.
Approx 2/18–spontaneous left hip fracture.
2/27–3 pins inserted into left hip

100. LynnCS March 8, 2015, 12:09 am

I took it for two months. I was surprised to not have any side effects as I am really sensitive, usually, to medications. I do worry about the cancer concern. I am exercising more than I was and found that it helps in so many ways. I’m on a whole food, plant based diet, so I feel I’m doing the right things now. I have taken Actonel in the past and I’m a bit angry about having had the wool pulled over my eyes then, but glad to have stopped it. I’m sure it did a lot of damage. I’m still not sure what to do. My doctor supports the healthy diet and is more alternative than many docs. Because I have broken some bones over the years, as recent as a broken ankle last year, where the surgeon said my bones were “soft,” he says that it’s more risky to continue to break bones than the “outside chance” of getting cancer. The C word is scary. I’ll keep reading your reviews, but need to decide soon. Wish me well. Lynn.

• Vivian Goldschmidt, MA March 8, 2015, 3:14 pm

Hi Lynn,
Good for you for asking questions and doing your research. Personally, I can’t imagine risking cancer to take a dangerous drug that, ultimately, won’t be good for my bone health – especially when there are effective, drug-free options like the Program. 🙂

• LynnCS March 21, 2015, 3:23 pm

Hi Vivian. Thanks so much for the reply. I used it for 2 months but can’t afford it. He has given me some forms to apply for help from the company and says…get this…”You have more concern over broken bones than cancer, at your age.” I am concerned about the bones, but am trying to up my exercise and keep an alkaline food plan. I hope it is good enough. Scary!

• Vivian Goldschmidt, MA March 22, 2015, 2:48 pm

I’d say both are important health concerns! Kudos for sticking to your beliefs, and choosing to go drug-free.

• Christine October 11, 2015, 5:46 pm

I agree

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