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 (https://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. (https://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”. (https://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.
I don’t know exactly how prayer works, either; but it’s an important part of my life.
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).
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
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.
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 ?
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.
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!
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.
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?
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.
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?
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!
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?
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
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.
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.
You should be able to request a bone density scan after one year. I did this & it was working so I continued another year
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
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
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!
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
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.
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.
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.
Has anyone out there ever had bone spurs after completing forteo
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
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.
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.
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.
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.
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.
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
I would not take this stuff research it is some scary medicine no thks
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.
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!
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.
Out of 50 reviews I seen 2 good outcomes I will never take this
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
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
Lily is listed as the manufacturer on my Forteo Box…
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!
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
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.
Happy to read this Ramona. I was terrified with some of the comments. Did you gain weight?
Thanks
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.
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
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.
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.
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.
They call cuz this medicine is 3 500 a month
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.
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.
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?
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.
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.
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.
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…
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.
46 year old female. Started injections today. Have osteoporosis from
Steroid use to treat sarcoidosis. Will be watching the thread. A little nervous.
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.
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
Thank you for the research links!
I am trying to find research on #patients who developed osteosarcoma who were taking Fortes – can’t find a thing. Can someone help me?
more real research. https://www.ncbi.nlm.nih.gov/pubmed/27925287
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.
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!!!!
You ought to turn to natural holistic medicine instead, you will heal naturally!
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.
Can you walk 20-30 minutes daily and take calcium and vitamin D? I would prefer that to Forteo or any other drug.
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).
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.
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.
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?
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.
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.
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
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.
Glad it worked for you
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.
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.
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!
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.
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?
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.
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.
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.
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.
Forgot to say that I’m female, athletic, 72 and really healthy.
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.
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.
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?
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 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
Started Forteo on March 17, some irregular and fast heart rate and developing high blood pressure 140/90. Anyone else?
I got fast heart rate for 2 hours after each shot.
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.
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.
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.
p.s. The injections are incredibly painless and simple. This article is nothing but fear mongering.
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.
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.
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.
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.
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.
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!
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.
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
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
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.
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
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!
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.
We are trying this. https://www.amazon.com/s/ref=nb_sb_noss?url=search-alias%3Daps&field-keywords=Supplement+osteoporosis
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 ❤
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
Turn to Holistic Medicine, your body will thank you for it!
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…
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.
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
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?
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!
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.
I have to thank you for the efforts you’ve put in penning this blog. I’m hoping to check out the same high-grade blog posts by you in the future as well. In truth, your creative writing abilities has motivated me to get my very own blog now ;)|
https://articles.org/EFBBBFmaster-universitario-de-fisioterapia-en-el-deporte-2/
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.
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.
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.
Please read the side effect information for these meds.
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.
Double Ditto To Jerry’s post.
Hi, I think your website might be having browser compatibility issues. When I look at your blog in Ie, it looks fine but when opening in Internet Explorer, it has some overlapping. I just wanted to give you a quick heads up! Other then that, wonderful blog!
https://storify.com/Stephens86Wichm/master-universitario-en-fisioterapia-del-deporte-y
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.
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.
I am now on Forteo for 6 months. There is no pain even giving yourself a shot.
Good to hear that things are going well for you.
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
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
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.
,
I didnt know you lost the bone you gained??? Why?
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.
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.
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.
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.
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
Yes, i got the card and now pay $4 a month
@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!
Check with Forteo they have me a discount prescription card and it only cost me $7 a month
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????
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.
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
Look and search Gerson Treaphy
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!
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.
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!
Jack are you a patient that has or is currently using Forteo? Just curious
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.
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.
I concur wholeheartedly
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.
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.
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.
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!
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!!
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.
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.
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.
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.
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.
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.
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.
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.
Turn to holistic medicine and do an online search on how to Reverse Osteoporosis.
Do u think kyphyoplasty helped?
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.
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.
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!
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.
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
Interesting…I too had shingles while on Forteo.
…VERY interesting! I too had shingles after starting Forteo.
Shingles…. me too!
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!
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. 🙁
thanks for your reasoning and research. I will persist with this terrible forteo flu
i found this. start researching in these data bases. Read complex studies always. be informed. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4939987/
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 ?
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. 🙂
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
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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%.
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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.
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.
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.