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.”

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

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

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

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

## Exorbitant price tag leads to exorbitant profits

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

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

## Doctors ignore ignorance?

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

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

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

And it sounds like a job for Agent 4T0…

## Mission: Impossible

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

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

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

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

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

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

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

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

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

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

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

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

“Oh, nooooooo!”

So there you have it.

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

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764 comments. Leave Yours Now →
1. Linda Museus January 14, 2017, 6:14 pm

I started Forteo in 2013 after a DEXA showed by right him at -2.7. Took it for 14 months with NO side effects. I went off it due to cost and started taking an algae-based Vitamin D (which cost about $40 a month). Last August, another DEXA showed my bone density in my right hip had decreased 5% to -2.6. I started the Forteo again yesterday. I have another 10 months and I decided it was worth the cost – altho’ it has obscenely doubled in cost in two years. When it first came on the market in 2002 it was$500 a month. Now, it is about $3,000 a month (I have insurance that pays about 2/3 of the cost). This increase in price is outrageous and totally not justified. But, it’s the only drug that works. I refuse to take any of the bisphosphonates due to bone fractures caused by them and my dentist has advised against it. So, I’m stuck between a rock (cost) and a hard place (horrible side effects of other drugs). I value my ability to get around, walk, etc. and not worry about fractures or osteonecrosis. So, Forteo won out, big time. I have been healthy all my life and take levothyroxine for a slight decrease in thyroid function and a BP drug for high BP which developed after hernia surgery. I heartily recommend Forteo if you are in good health and can afford it. • Linda Museus January 14, 2017, 6:17 pm Oops – a couple of small errors in my post. The first reference to my osteoporosis problem said “right him” and should be “hip.” The second was my bone density went down 6%, not 5%. Little errors, but I’m a stickler for accuracy. • DD January 19, 2017, 11:29 pm Are you aware of the Co-Pay card? Google ‘forteo co pay card’ for the info. You may be eligible for a reduction in your costs. It was very easy for me to qualify. It’s not based on income. If you haven’t already, you should contact them. Best, D. 2. Diane December 28, 2016, 2:51 am 73 yr old Canadian female with Rheumatoid Arthritis. 8 years separately on areva (sp? – I think that’s what it was)), actonel, fosamax. Various insignificant fractures (small bone side of each foot in separate falls) 2000, 2001, 2009. Summer 2016 fractured ankle and opposite femur. Visited hospital Osteo dept a week after ankle fracture found and complained about my opposite hip hurting. X-ray showed fracture. Surgery the next week to insert pin (long rod) in my thigh. Started Forteo 3 weeks ago (paid by our govt health plan because of my age and risk of more fractures). Since then, extremely fatigued but also very achy in bones especially leg and ankles. I just want to spend my time asleep and curled up under a blanket. Thought cause might be due to RA because I had to stop Enbrel for 6 months due to surgery and resulting problems but having been back on Enbrel for a few months now (long enough for it to kick in again and work well for me again) , I can only attribute the aches etc to Forteo. Found this site while looking for feedback on Forteo. I hope side effects abate because I don’t want to live like this for next 2 years while on Forteo. Have side effects eased up for anyone after awhile while still on Forteo???? • Indelisa Mejia January 7, 2017, 9:01 am I stared taking FORTEO last February and I have been in pain for about ten to ten a half months, the pain it’s all over my body I’m thinking seriously on stopping Forteo, plus my co-pay went up from$20. To &50. This year I’m a 69 year old living on retirement.

3. Monica Lynn Lorain December 25, 2016, 1:26 pm

Sam, you are also in my prayers. Gotta be tough being so young and suffering like you do, but trust me, we all have a purpose here on this earth that is not always clear. Keep strong. Keep researching possible treatments (not just what one doctor tells you). A hopeful outlook can go a long long way!

4. Jack Thompson October 6, 2016, 2:13 am

My previous comments regarding the truth and efficacy of Forteo have been removed.

Let me be more diplomatic. The parable regarding Forteo is well intentioned, I’m sure.

Let me present the facts regarding why Forteo works. The bit of truth in the story is that the price of Forteo is high. Commercial insurance pays for the drug, when the Prior Authorization is approved, and the company, Eli Lilly has a co-pay card which reduces the cost to $50 a month. That is reasonable for the outstanding efficacy and safety of the drug. To call it a drug is really a stretch, though, as Forteo is an authentic representation of a molecule made in the body by every human being — parathyroid hormone. While it is true that it is a fragment of the molecule chain, the first 34 amino acids of an 84 amino acid chain, it is no accident. Those first 34, precious and by the way, natural occurring amino acids are the ones responsible for bone re-modeling. You see, Forteo replicates the body’s natural ability to eradicate old bone through the cells called osteoclasts. Old bone weakens, and the body’s natural defense is to remove it, like all other old and dead cells. Forteo also stimulates the other side of the bone re-modeling process by stimulating Osteoblasts, whose job it is to form new bone to take the place of the re-sorbed bone. The 34 amino acids were found through many years of research to be optimal in the stimulus of a very natural process. 14 years have proven it’s efficacy by helping prevent fractures by helping the body to re-build new, natural bone. This is unlike the bisphosphonates, and Prolia, which add density to existing bone, but these drugs, called “anti-resorptive” agents do not address the problem of aging, fragile bone. They really only delay the process. While reviewing this site, I have found that the author has many helpful, nutritional tips which help address bone health, and they have my support. Diet and excercise are the first line in addressing bone health. Weight bearing exercise, and good nutrition are vital keys. One study showed that jumping rope may be one of the best weight bearing exercises because it produces enough stress to help encourage the strengthening of bones by the stimulus of the remodeling process described above. However, for some, and perhaps many patients, that simply isn’t enough. While I agree with the author that the bisphosphonate class of products and Prolia do not address bone health, I assert that Forteo is in a different category and should not be feared for those patients who have a very high risk of fracture, which includes anyone who has already had a previous osteoporotic fracture. In my 14 years experience with Forteo, I have seen many patients helped by this product. A patient may not always gain a lot of what is labeled “BMD.” or bone mineral density. DEXA scans, and BMD, which helps assess the relative bone health, is not very effective in evaluating the new bone formation that takes place with Forteo. DEXA is a 2 dimensional scan which is limited AFTER the course of Forteo therapy in assessing the 3 dimensional effect of the drug. SO, some patients gain BMD and some may not gain any. But the effectiveness of the product is best measured by the reduction in new fractures, which is very high with this product after 1 and 2 years of therapy. The mechanism of action of this drug is not mysterious at all. In fact, it is well known. It simply counteracts the effects of aging, and resultant loss of hormones, specifically, estrogen in women, and testosterone in men, the loss of which contributes mightily to bone loss. Both are helpful in the remodeling process. In the interest in science and truth, I ask the that author allow my statements to stand, because they can be easily verified and authenticated, and actually have been proven in many, many peer reviewed scientific journals. There are limitations to everything, and Forteo has limitations on the package insert for patients who have had radiation treatement, for instance. But only because those patients present at a higher risk for certain types of bone cancer. The manufacturer of the product has maintained a safety registry throughout the lifespan of the drug, and there has been no causal effect of any prolonged difficulty. Most of the side effects that have been mentioned on this side have been known, but are usually transient in nature. Of course, coincidental issues can occur with different patients, so to assert that Forteo causes hair loss or itchy skin is simply not correct. And some medical professionals that I know, esteemed leaders in the field of bone health — who have devoted their lives to treating osteoporosis, such as those at Columbia University, have treated patients for longer than the FDA guideline of 2 years, and have achieved outstanding results for patients whose bone health had been severely compromised. In my professional view, the very natural origin of this product, from molecules produced by the human body itself, presents absolutely no danger to humans whatsoever, but the very small dosage on a daily basis can be a game changer for the patient with severe osteoporosis. • Mrs John December 8, 2016, 2:56 am I am someone who is a new user of Forteo, paying the$50 per month that has been mentioned. So far, I have found the injection pen easy to use, and I’ve had no unpleasant side effects.

I believe every medication has the potential to cause some serious side effects.

I’m grateful to read something encouraging regarding Forteo. Thank you!

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

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

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

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

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

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

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

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

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

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

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

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

• GiGi January 4, 2017, 10:50 am

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

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

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

• Georgeanna November 11, 2016, 8:00 pm

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

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

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

• Z December 20, 2016, 12:42 am

Mary,
Please reach out to your medical office to see if you qualify for “Lilly Cares”…. this is a Lilly patient assistance program that could potentially get you qualified to have Forteo for free… also if you don’t qualify for that, you could find out if you qualify for LIS Medicare program (Low income subsidy)… both of these are ways you can potentially get the Med at $0 out of pocket. • BabyBones December 14, 2016, 5:35 pm Dear Mary , Your Dr. Can ask Lilly for free samples of the forteo for you.You csn also call the forteo help line and they will help you.Lily is one of the best comeanies I know to help folks.Hope this helps God bless. • Wendy Branham September 19, 2016, 11:19 am Hi, thank you for your comment, you just described me! Unbelievable to find another person my age who has had the very same experience having the endo and the hysterectomy and then drs saying they have no idea why my t-score is so bad at such a young age, I was 44 when diagnosed. I took Forteo for one month and had several bad side effects, mainly joint pain but when I started the next pen, I had a severe reaction and severe pain spread across my lower back. My doc said I might have gotten a “bad” batch or something could have happened during shipping so I got them to replace the pen with a new one. I still haven’t tried the new batch because I am so terrified that I will have another reaction to it. I have already suffered fractures and I also need a total hip replacement due to avascular necrosis in my hip. That bone is dead. No explanation. Not caused by Forteo but I’m in bad shape. Because of my t-score being so low, there is a risk of my leg breaking when they go to put the pin in it for the hip replacement so I’m terrified. Originally they wanted me to take the Forteo for six weeks before surgery to strengthen the bones but now they are rushing me to go ahead and schedule. I’m an emotional mess because of all this. I hope things go well for you. I was so shocked to read someone comments that they were virtually a carbon copy of myself you are not alone. • Anne October 23, 2016, 4:35 pm I’m having a bad day…My heart goes out to you. This is an especially difficult way to live, isn’t it? My prayers go up for you. 7. Karen_r August 31, 2016, 11:18 pm I would like to know why this article is so anti-FORTEO???? Was it commissioned by the bisphosphonates manufacturers???? 1. I was diagnosed with all out Osteoporosis at age 46 (T-score being -3.3 in one area, -3.1 on another and in the high -2’s in the other two areas of measurement. It took my Dr. about 18 months to figure out, after doing MRIs, other nuclear medicine tests trying to get anything to show up, scans (4 altogether) and many blood workups (they thought I had leukemia because of how low the amount of calcium in my blood (normal is 18-20, mine was at 9) was and sent me to an oncologist). They thought cancer before thyroid. This, I later found out is typical of trying to find out what is wrong when there is no obvious or diagnosable cause. Finally the doctors’ (I had a 3 dr. team) best educated diagnosis was that I had a hyper-parathyroid even though there was no 100% confirmation. So essentially the surgeon went in blind (totally scary) with drs hoping that that was the cause after eliminating anything else they could think of. *You have 4 parathyroid glands, each weighing approx. 32 mg. each. 3 looked completely normal when she opened me up, but right away my surgeon saw the bad one. It weighed about 938 mgs. It was huge! That was where all my calcium had been sucked up to. 2. Remember that Osteoporosis is a degradation of your bones at different levels as well as your jaw and teeth. VERY IMPORTANT! That explained why over a period of years my teeth went to shit. Also, once the dr’s remove the parathyroid, they still can’t tell you how long it’s been on the fritz. 3. Now, keeping all of that in mind, ** HMO’s have to try and keep costs down contractually. So rarely (it is getting better though) will one’s dr. (I sure as heck know mine didn’t) bring up alternative treatments one of which is FORTEO (which costs between$1300 & $1800+ per month) and which lasts for 2 years.$36,000.00 vs. $2,000.00 bisphosphonate treatment cost for 2 years. THINK ABOUT THAT. 4. I refused to go on any type of bisphosphonate because of the very real possibility of the “very rare side effect” as cited by the bisphosphonate industry, called Osteonecrosis, which can be a not “so rare side effect” due to the deterioration of the condition of one’s teeth, mine which needed and still do need extensive work and any infection associated to that dental work can start the “very rare side effect” of Osteonecrosis. **Which is when your jawbone starts to die and MUST BE REPLACED, MUST BE REPLACED by a metal-titanium?? replacement jaw and fake teeth implants. There are no in between fixes. **THIS IS NO EXAGGERATION. NOT AT ALL. **I’ll bet the bisphosphonate industry did no studies whatsoever that included women having major restorative work-root canals, bridges, tooth/teeth removal-being done at the same time as being on a bisphosphonate regimen. Or w/in at least 2 years of having had been on one. And if they did, they buried it. (Think tobacco). 5. My dentist and any other informed dentist worth his salt, did and will refuse to do any type of restorative dentistry during any period of being on any type of a bisphosphonate regimen. The rate of Osteonecrosis skyrockets if dental work is being performed while on said regimen and/or for a period of time afterwards. But dentists don’t know what that time period is. What? Why?? NO STUDIES!!!! Something which your dr. will conveniently “forget” to tell you while recommending that treatment. **I can’t prove this but it is something I deeply believe down to the bottom of my soul; that after the hours and hours and days just filled with researching all of the different treatment options available to me as well as the side effects of each individual option; ***As well as speaking extensively with my dentist and my parents’ dentist who just happened to be the president of the ADA in my very large county. 6. The injection is not at all as described above (admittedly I was a VERY wary at first). But the “nano” needle which is smaller than the 1/32 needle that the pharmacy typically says is the smallest, that fits the FORTEO pen, really does make the injection practically painless. It just feels like a very light pinch if that (and may I add that just the thought of a needle makes me quesy). 7. Within the first year, compared to the baseline DEXA I had right before starting FORTEO as well as calcium and daily IU d3 2000 vitamin d supplements, I experienced about an 8% increase in bone growth and density. 8. And 8 months into the second year so far, every area measured by the DEXA except for 1, my left forearm, has been downgraded to a T-score of the 3 other areas to -2.4, -1.8 & -1.4. keeping up with doing everything alongside as mentioned in #7, plus I added magnesium 6 or 7 months ago (supposedly mag. helps with the absorption of calcium into the bones. WooHoo!!! I’ll have my last DEXA related to my FORTEO treatment 1-2 months after completion of treatment. 9. Clinical studies actually do show that FORTEO is more effective in building new bone than ANY bisphosphonate. With much milder side effects of which I haven’t had any, and absolutely no chance of Osteonecrosis. Look it up for yourself. • Robert September 9, 2016, 1:32 am 55 yo. MALE. Completed two year treatment course in Feb 2016. The benefits are impressive. The side effects are not nice and some I wasn’t aware that Forteo was causing such as severe hair loss, intermittent nausea, increased pain in chronic pain syndrome, dry flaking skin, dry flaking scalp, increased anxiety (bi polar), depression overall mental health well being…. many others I will go into another time. I am just recovering from shingles outbreak and suffered serious bout of pnuemonia while on medication !!!! As I reflect more as time passes I will post more. Tks Rob • Anne October 23, 2016, 4:40 pm Interesting…I too had shingles while on Forteo. 8. P Hall August 30, 2016, 12:50 pm I have just been on Forteo for a month.. I am relatively healthy, take Vitamin D daily, not overweight, do not take any other prescribed medications & have no other health conditions. My MD had put me on “once a month” Risedronate (Actinol) pill until I could get into the bone doctor. The bone doctor ran a very thorough scan and it indicated I was borderline.. I cant remember the “T number/score” but I am 51 yrs old.. The bone doctor then put me on Forteo. I recall one of the nurses informing me that one of the side effects is flu-like symptoms.. After a couple of weeks of being on Forteo, I became sick with flu like symptoms for almost 2 1/2 weeks, days i didnt even feel good enough to go to work.. No one at work or in my family was sick and like I said I am relatively healthy.. so I’m assuming it was this side effect as opposed to picking up a cold somewhere.. I am getting ready to place an order for my first refill, so I guess i will give it another try and see if I get flu-like symptoms again. However, my real concern is that my mother did not have any bone issues, but she had cancer four times.. two breast cancers (@ age 45y & 61yr), kidney cancer (@ age 69) and following all of that, had a rare form of leukemia the last 2-3 yrs of her life (passing in 2011).. My mother was never prescribed any hormone/estrogen medicine as a result of menopause and/or aging issues because, if I recall correctly, due to her cancer/cancer history.. Although I have had no bouts with cancer, with my mother’s history, I have a strong likelihood of developing some type of cancer in my lifetime…If I understand correctly, Forteo is a hormone/man-made drug… Should i even be taking this with my mother’s cancer history ? Should I be on Forteo if I am only borderline? Would going back on the Risedronate be better/safer for me with my mother’s cancer history ? • Vivian Goldschmidt, MA August 30, 2016, 1:10 pm Hi P., As you’ve probably aware, drugs are never recommended on the Program -it’s all about drug-free ways to manage osteoporosis. What you decide, of course, is entirely up to you; no one can tell you how to proceed in the way that’s best for you. I encourage you to keep researching and take your bone health into your own hands, and decide what is best for you based on the information you find. Feel free to start your research here at this site! There’s quite a bit of free information here. 🙂 9. Junogirl August 23, 2016, 5:37 pm Six years ago, my bone density scan showed I had the bones of a woman in her 80’s and I was 49. I was not overweight, had been doing weight bearing exercises for years, did not smoke, and barely drank. I had estrogen therapy for about 2 years when I had a salpingo-oopherectomy at 35. My doctor determined my parathyroid was not working and I began daily injections of Forteo as Boniva made me violently ill. After six months, my bone density scan showed my bones were like a 35 year old woman. So after many years of multiple fractures (7 in my thoracic and lumbar spine alone), I was back to being myself, but without fractures or pain. The only side effect I had was that when I did the injections, my blood pressure would drop. I learned to inject myself sitting in bed, ready to go to sleep so I could lie down after the injection. For me, it was a gift to have this medication, and it was only the cost of my co-pay each month,$40, because the manufacturer provided vouchers for the rest. They also provided an insulated travel case to carry my dosages when I took trips. I didn’t take it as long as others, but my doctor said my results were perfect and I could go off at six months. So not all experiences will be bad on Forteo.

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

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

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

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

• Anne October 23, 2016, 4:47 pm

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

• Mostafa August 24, 2016, 8:40 am

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

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

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

• Amy August 24, 2016, 1:20 pm

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

• Lou August 24, 2016, 12:51 pm

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

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

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

• Rhonda August 24, 2016, 4:36 pm

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

• Me September 13, 2016, 2:18 am

Yes Charlie horses are a side affect they can be horrible

• DAH-RN August 19, 2016, 12:21 pm

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

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

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

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

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

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

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

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

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

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

• Donna August 25, 2016, 11:05 am

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

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

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

Susie

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

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

• Judy June 24, 2016, 1:04 pm

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

• Lorrie August 6, 2016, 3:19 pm

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

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

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

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

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

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

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

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

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

• mingus October 31, 2016, 4:11 am

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

• YDN August 4, 2016, 3:43 pm

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

• Linda August 2, 2016, 11:09 am

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

• Jenni October 26, 2016, 12:39 pm

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

• Cher July 24, 2016, 12:13 am

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

• LYNN STRONG July 22, 2016, 2:01 pm

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

• CAS July 27, 2016, 8:49 am

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

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

• PJ July 12, 2016, 3:31 am

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

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

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

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

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

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

• Cher July 24, 2016, 12:15 am

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

• sara June 24, 2016, 3:40 pm

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

• Nourah June 11, 2016, 7:10 pm

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

• Buffalo Bill July 8, 2016, 3:07 am

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

• B. Ford December 4, 2016, 2:37 am

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

• Esmeralda December 16, 2016, 12:22 pm

B.Ford, can you prove there IS?

• Me September 13, 2016, 2:42 am

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

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

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

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

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

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

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

• Michele October 15, 2016, 8:49 pm

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

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

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

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

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

• Sissybeans May 16, 2016, 12:15 pm

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

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

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

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

January 9th 2016 I suffered a t11 compression fracture while on my way back home to Illinois from San Juan. The result was 3 weeks of trying to get test results from a Kentucky emergency room to my orthopedic doctor here. He immediately referred me to neurosurgery. The new doctors office has an osteoporosis Doctor onsite and a clinic. Post surgery ( vertebroplasty) I was referred to the osteoporosis clinic as my bone density is -4.987. I’m 42 years old. 5″1
3/4 inches. About 100 pounds currently and post hysterectomy at age 26. Also I’ve never been on hormone replacement therapy and now I don’t know why! I asked every year or so but they kept saying Premarin was causing heart attacks? Now that I’ve had an MRI on my back we learned 2 other bones t10 and t9 had small fractures and t8 is only about half the size it should be. Should note I used to be 5″3 1/4 so I’ve lost almost 2 inches of height. So instead of the medicine to stop bone loss they wanted the forteo to rebuild bone growth. It arrived today and I’m scared to death to use this stuff. Seems here I am reading mixed reviews from other patients. I’ve already lost 22 lbs over this ordeal from the constant puking from pain medicine. I can’t lose anymore weight. I normally have a lower BP 92/54 is my normal so reading sudden drops in BP can occur ? Nausea and vomitting ? More pain? I’m really anxious over this prescription and I just don’t know what to do. I have a bad feeling about it and I can’t shake that fear.. I’m afraid of this crap! I’ve never been so afraid to use a medicine and have always trusted my doctors but as I am learning now I should’ve questioned more back then and I don’t want to make the same
Mistake now. This drug has me a basket case. Called my doctor and they dismissed my concerns entirely and said to stay off the internet !!!!

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

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

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

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

• Joy July 2, 2016, 4:45 pm

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

• Karen June 30, 2016, 2:07 pm

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

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

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

• Tammy July 24, 2016, 7:27 pm

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

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

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

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

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

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

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

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

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

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

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

• jacqui August 3, 2016, 10:16 am

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

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

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

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

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

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

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

• Andi December 27, 2015, 1:47 pm

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

• Julie March 15, 2016, 12:50 pm

Christye and Andi — Thank you for sharing your stories. I’ve had similar experiences with multiple stress reactions/fractures (3 since 2008) and was just prescribed Foreto. I just turned 44, am pre-menopausal, and am very active. I was training for my 11th marathon when I had another stress reaction in my tibia on December 19, 2015. It didn’t heal as quickly as it should have (even though I was very compliant w/ resting it, etc.), and progressed to a stress fracture (still wearing that $(%& boot). I am determined not to stop running and am desperate to get back to it. I was originally prescribed Foxamax by my internist, but after researching it, I quickly decided not to take it. I just saw an endocronolopgist yesterday who told me that Forteo shows promise with rebuilding bone in pre-menopausal women, and that I’d only need to take it for 6mos to a year. I was hesitant to take it, but given that I was already doing the things we’re supposed to do to have strong bones before this last fracture, I think it’s my best option. Don’t give up on your marathon dreams, Christye — there may still be hope! 30. JT December 15, 2015, 7:12 am I was in perfect health all my life until I broke 2 ribs and had 3 compression fractures of the vertebrae, all non stress related within 2 years. My mom aunts and cousins all have osteoporosis and kyphosis. I am now 58 and just started my 5th month on Forteo and notice swelling in my cheekbone on one side. I went to my internist yesterday who ruled out any infection or sinus problems and told me to stop taking the Forteo until my bone specialist does a scan. She had a patient on Reclast that developed 6 dime sized bone spurs and she is concerned about that. My bone specialist stopped me from all heavy lifting and exercise, except for walking, a year ago. I feel weaker than ever and want to build muscle. I hope the specialist responds today since she has not returned previous phone calls. I am thinking I should just stop and start exercising and getting healthy through changes in diet and reducing stress. Any advice appreciated! • Evie Hodgson April 26, 2016, 4:52 am l was at LAX bending to lift a heavy bag when l collapsed in excruciating pain. l thought l had been shot.! After returning to England l saw chiropractors for 3 months hoping to relieve my back pain. When they said they would not treat me unless l had an x ray. l did and found to my horror, not only had l lost 4 inches in height but l had 5 wedge fractures plus others in my C section (spine) several rib fractures (due in part l must admit by an enthusiastic chiropractor, and had severe osteoporosis. The surgeon was wonderful and ll had vertebroplasty in 5 vertebra and put on alendronic acid. l could not tolerate the pills and they burnt my stomach and had awful side effects. So l was put on Forteo. So much better and yes there are side effects that come and go, nausea being the worst, tiredness and leg aches. l also have been diagnosed with arthritis, degenerative sub articular cysts in my neck vertebra and seem to be ageing quickly.!! (rusty). It seems to have all come at once.! l am 64, been physically active all my life and the difficult part is lifting anything, even a kettle as my spine is teetering in places where the degeneration has really kicked in. l have been on Forteo for 2 years now and just had my bone scan. l feel better in myself (stronger and my bone density has increased by 28% ( It is now -1.9 T score (It was initially when tested T score -3.6. l have hope. Now that l am coming to the end of 2 years on the drug l am now having been recommended by my specialist to have an intravenous drip of Zoledronic acid. So we will see where that goes. l also take an extra vitamin D high supplement to help the calcium absorption. Yes l find this condition absolutely debilitating sometimes and the pain in my hips and spine are so tiring and distracting. l just have to lie down and rest my spine. But l am better than l was and the pain is not so frequent so my spine has got stronger. Hope is a wonderful thing. 31. Donna Baughman November 18, 2015, 2:54 pm I went on Forteo recommended by my doctor after having a terrible reaction to oral meds for osteoporosis. I experienced terrible muscle spasms in my upper chest to the point where I could not walk and barely breath thru the episodes. I worked in a warehouse pulling orders and would have to stop in my tracks until the pain subsided. I had never had that happen before using this drug. I went off after about 5 months of injections, but to this day (7 years later), I still have the spasms when I am tired or have been upright for an extended period of time. I put the blame on this drug and will never take anything for my bones again. Drug companies are only interested in the , not the patient. Done with giving my hard earned money to exchange one problem for another! thanks for giving me a place to vent! Donna • Eric Weisman February 8, 2016, 1:49 am Unfortunatley, I think Donna is absolutely correct about the Drug Companies being interested in $$only. The FDA does not require Chemical Drugs to disclose their ingredient list content, so the Doctor nor the Patient know what they are really using. Sure: There may be package warnings about side effects including cancers and death, but why is the Public not aprised about the Chemical Content of Prescribed Chemical Drugs so they can make an informed decision for themselves before taking Chemical Drug Cocktails. I work in supplement compound technology for internal disease and all the ingredients that are incorporated in the proteins, vitamins, herbs, minerals and enzymes I use are fully disclosed on the labels. Sadly, in my view, the FDA, USDA and the State Depts. of Health work to make it look like they are protecting the interest of the Public, when in reality this facade allows Chemcal Drug Companies to sell products with undisclosed dangerous ingredients that can lead to various forms of Organ Failure, Cancers and Death. The Chemical Drug Industry sells about 80% of its’ Anitbiotics whichinclude other Chemcals along 85% of all the Steroid Growth Hormones made that come to or are made in the USA to The Meat Poultry Fish Dairy Egg Industry. The Animal Slaughter Industry uses the cheapest forms of protein they can to feed Meat Poultry Fish Animals including their own Sewage, Blood and Flesh Parts that can not be used for Human consumption including Eutahnized Cats, Dogs and Roadkill. Meat Poultry Fish Dairy Egg Labels do not disclose ingredients and there is a good reason for this: You probably would not eat them if you knew what was in the feed of these poor Animals. I eat Vegan Veggie Burgers, Veggie Hot Dogs, Veggie Sausages and Veggie Chic’n Patties grilled “Crispy” on the outside. They do not contain Eggs or Dairy. I use Vegan Vegetarian Pet Foods for my Dogs and Cats and woud never trust a Meat Poultry Fish Slaughter Co. to provide my Family with anything, much less the Chemical Drug Industry. I have eaten strictly vegetarian substitutes for Meat and Poultry Products along with salads for over 40 Years. I have no health issues other than a back injury I sustained in a 2014 Car Accident and it has improved. I have no High Blood Pressure, No Hypercholesterolemia, No Osteoporosis, No Cancer and I weigh the same as I was in my 20’s, but my physical performance exceeds and intellectual capacity exceed that of what I had in my 20’s. People tell me I look like I am in my late 30’s to early 40’s, but I am in my 60’s. You can see me, Eric Weisman, speak on u-tube at the World Vegan Summit last March. I will be speaking at the Green Planet Festival in Fort Lauderdale on Feb. 27th, 2016. I hope to see you there. • Tanuel December 25, 2015, 7:58 am I took forteo and almost had to have parathyroid surgery, but refused to have surgery, after being off forteo a long enough time my numbers returned to normal. It caused a high calcium level in my blood stream. Causing me to be very tired ALL the time. I called Eli Lilly and they did not seem interested even though there is a parathyroid harmone in the drug I was told by their pharmacist. I wish we could get it off the market. I have never taken drugs, till I took forteo I will not take any drug again I will stick with healthy foods and water and minerals. Tanuel 32. Eric November 14, 2015, 1:27 pm My T scores after breaking my left leg at the tibial plateau were measured at -1.0 to -1.7 and I predicted my t scores before my Primary Physician even told me what my scores were, would average out at -1.5 due to the fact I was taking Phenobarital for epilepsy for years before I was finally tested for my DEXA scan, which should have occured when my neurologist and primary physician when the put me on Phenobarbital, but I was never tested until I fractured my left knee at the tibial plateau, I have cronic nerve pain now below the ankle, am taking what anyone would call massive daily doses of nuerontin for the nerve pain, and still suffer break through nerve pain that never really ends. Lyrica is out of my financial reach, but works well in dealing with my pain. My observations are that DEXA scans prior to prescribing Dilantin and Phenobartal and all other antiseizure medications is a matter of The Standard’s of Care that all physicians MUST adhere to or risk the facts of being sued for Medical Malpractice, to be filed against you and your practice. Heed this advice, my physicians really did me alot of real harm, don’t let this happen to you, demand a DEXA scan before you let your Dr. ruin your health with antiseizure medications. Unforetunately for me and my Doctors, the damage is done, now it’s time for the lawyers to step in, on my behalf. 33. Lisa October 27, 2015, 1:33 pm I am a 55 year old female who has had stage 3 breast cancer, broke my ankle and had surgery five years ago and am going through PT after a femur bone brake that now has a rod and pin. I do have osteopena and have gone through menopause due to the cancer. I also have esophagitis. My orthopedic doctor has stated he wants me on the Forteo. I am not sure that it is the right drug for me. There is the two major breaks in 5 years that is concerning. I am asking for your opinion. Lisa • Teresa March 5, 2016, 3:20 pm If you have had cancer don’t do that drug. • Elsie November 24, 2015, 1:14 pm I am a 91 year old female who has been very active all my life. I had been taking boneva for several years and when I developed femur pain my doctor took me off it. 2 months later I broke my femur. I think it broke and that is why I fell. I now have a rod and 2 screws in the femur. I have just been taking calcium since then. I fell 5 months ago and broke both bones in my wrist. Recently had a bone density test which showed a lower score. Dr. wanted to put me on prolea, but after reading side effects was the same as boneva. I’m not sure that forteo is any better. All have bad side effects. 34. clemmons October 26, 2015, 8:12 am After 2 months of Forteo experienced extreme joint pain and muscle weakness, debilitating nausia and vomiting. • Me September 13, 2016, 3:04 am I’m into 6 wks of Forteo horrible leg and hand cramps, cannot sleep, migraines with a vengeance, dry sore mouth Dr has taken me off for a week to see if these issues clear up. I am praying for guidance I want quality of life • amc3smith November 19, 2015, 2:21 pm What did you do? Did you stop taking the Forteo? Did the side-effects go away? How long did it take? • Luann December 1, 2015, 10:22 am I was on Forteo for four years. . I had good months and I had bad months. 13percent of my lumbar spine grew back. I am no longer at 69percent. Now at ostepenia. The daily shots were easy to do but many of the side effects were bad. Some days I couldn’t get up and would crumple when I did. I would get nauseated some months for entire month. I would be dizzy often. I had what I call traveling pain. My pain would pop up in a different area each week. Or move from one joint to another in a day. Get into the Bone Girls Club online and on the Osteoporosis blogs. You will find many other people to talk to about all of this. Good luck. I would do it again. • amc3smith November 19, 2015, 2:19 pm What did you do? Did you stop taking the Forteo? Did the side-effects go away? How long did \it take? 35. Lawrence October 10, 2015, 5:51 pm Vivian, I was on Forteo for 2 years and it did help my T-Score. Then the doctor put me on a bisphosphonate – alendornate. He said that if I did not take it I would loose the improvement from Forteo that I got and all that money would have been wasted. Forteo benefits fade away unless you take a bisphosphonate. Is that true. Is that that way to go continue with a bisphosphonate or is your save our bones program with calcium better from here on. Which direction should I take? Please advise. • Christine October 11, 2015, 1:26 pm Thank you for your input. I am on a 3 month trial of Teriparatide injections. I feel ill, sick dizzy heart palpitations and my concentration is poor. I am that close to quitting. Knowledge that medical authorities admit that they do not know how it works is helping me to decide. Your comments are very helpful. • Vivian Goldschmidt, MA October 10, 2015, 7:12 pm Hi Lawrence, Osteoporosis drugs can sometimes bring up a T-score, because they measure bone quantity, not quality. The problem is that the bone may be denser, but also harder, dryer, and brittle because the density came about as a result of disrupted bone remodeling. (Shedding old bone cells is vital for bone integrity, and drugs stop that from happening.) Of course, no one can make the decision about which path to take except you – but you are clearly doing your research, so you can make an informed decision. • Christine October 11, 2015, 12:57 pm Thank you for your thoughts. I am on a 3 month trial and have been injecting Teriparatide every day for exactly one week today. Apart from multiple fractures I am quite fit. Or rather I was. Now I feel quite ILL. You have reminded me regarding quality not quantity of my bones. I also feel sorry for any living creature given bone cancer on behalf of research. I look forward to the day we do not have to do this. Again thank you I feel I might not run the full three months. Everything is telling me this is not for me. The choice of a possible fracture or risk however minimal is making up my mind. Christine. • Vivian Goldschmidt, MA October 12, 2015, 11:27 am Hi Christine, I want to encourage you to listen to your instincts. No one knows your body or your health like you do. • sharon November 5, 2015, 9:20 am I have osteopororis and Paget’s Dr wanted me to take Forteo – said that was the only choice. Had the shots twice a year for two years and Actonel before that. Actonel helps with the Paget’s but not the bones. Anyway after consulting with a couple other Dr’s and reading up on it decided against taking the Forteo and am back on Actonel. Do I have any other choice – if it weren’t for the Paget’s would try your program for the bones. ???? 36. marcella August 30, 2015, 8:33 pm I’m 54 year old female who went through menopause at 34. After 10 years of hrt, started reclast, my bones continued to diterate. This year’s scan was T=-3.9, I was immediately prescribed forteo. I’ve been on it 4 weeks and have bad bone pain and fatigue but worth it if I can go back to jet skiing and being active!! 37. Barbara July 20, 2015, 9:19 am I was on Forteo injections for 5 1/2 weeks and that was over two years ago. Since then I have had an acid taste in my mouth constantly. My dentist pointed out that it is ruining my teeth. I have had more dental appointments in the last 2 years than I have in my life. I am going to see my Primary Care doctor asap and then possibly a cancer/bone specialist. 38. cyndy July 18, 2015, 11:44 pm My Mom is 88 and has been taking Forteo for 3 months. She has osteoarthritis, and she has just had a massive flare up. She has not had this level of incidence since she went through menopause. Does anyone else have any experiences like this? She has no other changes in meds or activities or diet. • Nora December 4, 2015, 11:41 pm I was put on a three month trial of Forteo. Although I do not have osteoporosis I had an atypical femur fracture which is still not healed after more than 2 yrs . Also had triple arthrodesis ( fusion) of my left foot in two surgeries at the beginning of the year, also not healed. After one week of Forteo I was taken off it due to a massive flare up of rheumatoid arthritis unlike any I had ever experienced: massive swelling and pain in joints never before affected and particularly my wrists, hands and knees. • Kathleen April 2, 2016, 5:20 pm I was on Forteo for 5 1/2 months. While on it, my calcium levels peeked, and I developed severe pain in my shoulders, wrists and hands. This pain was identical to pain I had about 9 years ago and was identified as pseudo gout. It’s not gout but calcium crystals in the blood that attack joints. While I had it, and it was very difficult to get rid of, it attacked my knees and all joints in my body Did any doctor diagnose your problem I’m just wondering. My doctor wouldn’t even address the issue I’ve been off Forteo now 4 months and feel great 39. Dennis July 14, 2015, 12:27 pm 45 year old L1-2 spinal cord injured paraplegic, 30 years post injury. Suffered a right femoral fracture during PT stretching. T Score for left thigh is -2.3. Hip is -1, Spine and Forearm are normal. Dr wants to put me on Forte for 2 years. Dr does not have much experience with SCI patients and this treatment. Mostly works with Post Menopausal Women. Anyone have experience with my type of situation? The mechanism of bone loss in my case is different than age related bone loss. 40. David B. Karpf, MD July 11, 2015, 12:22 am Your blog is an excellent example of fear-mongering and selective choice of information. You may think you are “helping people”, but you are not. Forteo is not the best choice for all patients, but it remains a good choice for some patients, and has a very acceptable benefit/risk ratio if used appropriately. • Camille December 9, 2015, 8:38 pm I have been on Forteo twice for 2 years. The last round was about 6 or 7 years ago. My doctor wants me to use it again but I am just really afraid to. Any advice? You seem to think it is a safe drug. thank you Camille by the way I am 64 years old • PJ July 12, 2016, 3:23 pm The instructions say not to use it for more than a total of 2 years in your life. I’d mention that to your doctor. • Tanuel December 25, 2015, 8:52 am I developed difficulty in swallowing and they wanted to do parathyroid surgery on me I had a high calcium count in my bloodstream which is an indication of parathyroid problems I went off Forteo and the blood calcium returned to normal good thing I did not have surgery. I still have a swallowing problem. Take care to correct any problem with good food ,akaline water and minerals for a start. 41. Deb Ard RN July 3, 2015, 2:26 pm I am a 62 year old woman who 8 years ago was diagnosed with severe osteoporosis after numerous ankle/wrist fractures whose pain I had dismissed and ascribed to “getting old”. I then tried oral alendronate that, after 3 months, nearly killed me from an esophageal spasm that shut down my airway completely, I am a registered nurse and was at work in a hospital when I suddenly could not breathe. Had i not been close by to immediate medical attention I’ve no doubt I would not be writing this now. Also, being an RN, I was careful to take the alendronate exactly as directed—it still nearly killed me. My physician urged me to try Forteo as really, that was pretty much the only other option for severe osteoporosis repair. We reviewed the clinical trials, including info about the common side effects and possible severe adverse effects including osteosarcoma. Longer term use of Forteo increased the likelihood of bone cancer, but, interestingly enough, the most benefit of the drug is within the first six months. The benefits continue a bit afterwards, but the risk increases as well. We already had a baseline bonescan–I had extreme bone density loss despite being an active athlete and equestrienne. I started the daily injections of Forteo and was followed VERY closely by a nurse case manager from that company–had to check in with her weekly. I did have some minor initial side effects–nausea mostly–but they disappeared after the first two weeks as we thought they would. At the four month mark I had another bone scan and had a 4% increase in bone density! The bone pain that I thought was “just arthritis” before taking Forteo was gone and had been gone since the first month of injections. My MD and I decided to discontinue the Forteo at that time–somewhat from a risk perspective, mostly because it had already done what it claimed it would do. If you are prescribed this medication by your doctor as a last resort as I had been, go and try it. Show your MD this post even–you do not need to take Forteo for 2 years! I was lucky in that my insurance covered it, but, honestly if I had known initially that this drug would do what it promised and that I would have no more pain nor have any more fractures, I would have borrowed the money somehow to cover the first four months. You are all correct, it is expensive but very very worth it. • Linda Q October 27, 2015, 2:21 pm I’m glad to know I don’t have to stay on it for 2 years, had some joint pain and muscle spasms, but after 4 months, this seems to have settled down. Just wondering if Medicare will cover second bone density scan at 6 mos, does anyone know? • Georgeanna November 11, 2016, 8:34 pm If Medicare won’t pay it, I found out the cash fee is around 200.00. I believe all insurance only pay for the test once every two years, but I want one in December, after I’ve been on Forteo for six months. If insurance doesn’t cover it, I’ll pay for it. I’ve had six broken bones in my Spine almost all at once. Had first four and then the last two. 42. Lailani June 8, 2015, 6:34 pm At 32, I had fractured both hips, multiple times, both feet countless times, other little fractures here and there. I was constantly in some sort of broken state. Since I wanted to have the option to have children, my doctor prescribed Forteo, as it doesn’t stick around in the body for a long time. My doctor personally spoke with and wrote to my insurance company after they rejected the payment for the very expensive drug and they agreed to cover it. I took the daily injection for 9 months. It has been 5 years and I haven’t fractured a bone since. It was worth the risk for me – a tiny chance of horrific side effects for the opportunity to walk around, unbroken for the rest of my life. • Suzi June 14, 2015, 8:17 pm Why did you only have to take it for 9 months and not the 2 years? I just started this week. Never had a broken bone in my life until a boating accident last Thanksgiving. Found out I have osteoporosis and am not having a smooth time remembering to take it or put it back in the frig! • Deb Ard RN July 3, 2015, 2:31 pm You and your doc should discuss this. You do not necessarily need to take it for two years–that is solely the mark where the risk may outweigh the benefit and, actually, the first few months of Forteo gives the most benefit to your bone density. The benefit tapers off from the six month mark the longer you use it though there still is a benefit. 43. Caroline May 11, 2015, 4:32 pm I am a 75 year old female. About 2 years ago, I fell and broke my hip/femur (or broke my bones and fell). After surgery and during recovery in hospital/rehab centers, I was prescribed forteo. The price of this medication is now out of sight. My medicare supplement insurance will not pay since I am in the”coverage gap” and the cost is over 2000. The gap is not just financial but also a barrier to getting this medication. An important side effect of taking this medicaton that needs to be listed is POSSIBLE BANKRUPTCY. What options do I have? • Me September 13, 2016, 3:18 am Call Lilly cares perhaps they will donate the meds also the needles and pen. It’s all according to your financial need. I pay O thank God and the Lilly co • Tanuel December 25, 2015, 9:04 am Be glad you did not have the funds to take it, the side effects are worse than they say. I take minerals and try to eat properly and have excess energy now and I am 74 years old. Still have the swallowing side effect. Hope to keep working on it and hope the swallowing improves as time goes by. Sorry I took it. First time I ever took a drug. Last time I will do it hopefully. Tanuel • Luann December 1, 2015, 10:29 am There are outside agencies that will help with your expense. In fact Eli Lilly paid the largest percentage of my 2 year use. Get a hold of them. Or have your doctor call them to say you have to use this drug. I couldn’t have afforded the 1800 a month use. But 2 years was covered completely. • Linda Q October 20, 2015, 3:15 pm Caroline, I’m 65, at last count, had 39 fractures in my body, was averaging 3 a year. I’ve been on Forteo about 6 months, no fractures yet, but too early to tell if it’s due to Forteo or just being more careful. Just about all the major pharmaceutical companies have Patient Assistance Programs, in which they get you the medication free or at a reduced rate. You might want to check with Lily and see if this is available. I’m very low income, so copays are not a problem for me. But, back when I was still working, I was able to get Celebrex, which was very high when it first came out, for free. • Vivian Goldschmidt, MA May 12, 2015, 4:29 pm Dear Caroline, I am sorry to hear about your hip fracture and the pain you are experiencing. Remember – you always have options! Whether you choose to take Forteo or not is entirely your decision. It’s you, not your doctor, who will be paying a great deal of money and experiencing any side effects. No one can “make” you take a drug you aren’t comfortable with! 44. Nancy N May 1, 2015, 7:29 am I am a 62 year old active female. In January 2015 I was diagnosed with severe osteoporosis in my spine and right hip. Doctor prescribed Forteo. My insurance company (Florida Blue) has denied coverage twice, so I am now self paying 2000.00/ month. My husband and I are both retired and I am not eligible for Medicare. Forteo Connect will only help with reimbursement after what my Florida Blue pays. But because my insurance has denied coverage twice, Forteo Connect will not help with any reimbursement. Where is the sense in this?? My T score is -3.6 and I have broken ribs and toes just thinking I was clumsy. I am now on a weight lift and activity restriction which has dramatically effected the quality of my life. Anyone else have trouble with insurance or Forteo Connect?? 45. A F April 30, 2015, 2:57 am I’m an early 40’s male that had 2 Parathyroid Adenomas removed. The Parathyroid condition left me with multiple spine fractures and Osteporosis -3.5 T-Score. Been taking Fosamax for 6 months and only saw a 0.2 point increase in hip/spine density. Forteo has been recommended. Not sure what to do. Also have intractable bone pain. • Vivian Goldschmidt, MA April 30, 2015, 9:52 am Dear A.F., You are already on the right track – you’re doing your research! I encourage you to take full advantage of the free information on this site, and look carefully into Forteo and Fosamax, and gather all the information you can. Good luck! 46. Jenny April 6, 2015, 7:12 pm I took Forteo about 4 Years ago, since then, I have been diagnosed with Vasovagal Syncope Syndrome, which is a slowing of the heart which can be triggered by just about anything. I have had about 6 episodes and have been in the hospital on all those occasions. When the heart slows, your blood pressure drops low and you go unconscious, not a fun thing to live with. I have read that there have been other Forteo users that have been diagnosed with heart problems since taking it. I am curious what the data is. • Christine October 11, 2015, 5:42 pm Hello this evening I decided after only a week of taking Forteo, that the side effects are unacceptable and one of these effects is the increased rhythm of my heart. I am not going to inject tonight. The un-natural way the bones get ‘stronger’ I don’t like. Dizziness sickness and generally feel ill. 47. Mahendra March 27, 2015, 10:02 am My T score ios -4.2, started taking Terifrack by intaas. 3 fractures in spine, one shoulder dislocation, and other minor fractures at some places. advise 48. Danny March 9, 2015, 9:08 pm I am looking for some ideas for my wife who has osteopososis (t=2.8). This is caused by taking the blood thinner warfarin for 21 years because she has a mechanical replacement heart valve. Many people may find themselves in this same dilemma. Vitamin K is at the root of it. In order for the blood thinning to work, vitamin K must be in scarcity, so you can’t eat a lot of healthy greens. When the warfarin puts vitamin K into scarcity, the liver makes less of the clotting chemicals so the blood is thinner, but it also makes less of the proteins needed to bring calcium into the bones, so they get progressively weaker. All the normal prescriptions for exercise and healthy living will not work to maintain bone health if the calcium bearing proteins can not get to the bones. What to do? I thought Forteo might be an answer, but it looks bad. • Vivian Goldschmidt, MA March 10, 2015, 9:02 am Hi Danny, First, I commend you for doing this research on behalf of your wife, and gathering as much information as you can before ingesting osteoporosis drugs. Warfarin can be considered one more acidifying drug, so following the 80/20 balanced diet (as described in the Program) is a perfect solution. Believe it or not, even people taking bone-depleting drugs like corticosteroids have been successful while on the Save Our Bones Program. You and your wife can check Real Life Success Stories here: https://saveourbones.com/program/results/ 49. Kim March 8, 2015, 11:51 pm Know that I’m going to be given Forteo as a solution. Seeing endocrinologist tomorrow due to major bone issues caused by Actonel 8/10-4/10 took Actonel as osteoporosis preventive. Medical issues: 1/12–fell, fracturing L3 4/12–left jaw dental work 8/12–fell, breaking left shoulder 10/12–left jaw, dental work 11/13–spontaneous fracture of right femur 4/14–removal of all molars in lower left jaw due to jaw deterioration 7/14–spontaneous fracture of left femur 2/2-left hip began aching as leaving airport. Approx 2/18–spontaneous left hip fracture. 2/27–3 pins inserted into left hip 50. LynnCS March 8, 2015, 12:09 am I took it for two months. I was surprised to not have any side effects as I am really sensitive, usually, to medications. I do worry about the cancer concern. I am exercising more than I was and found that it helps in so many ways. I’m on a whole food, plant based diet, so I feel I’m doing the right things now. I have taken Actonel in the past and I’m a bit angry about having had the wool pulled over my eyes then, but glad to have stopped it. I’m sure it did a lot of damage. I’m still not sure what to do. My doctor supports the healthy diet and is more alternative than many docs. Because I have broken some bones over the years, as recent as a broken ankle last year, where the surgeon said my bones were “soft,” he says that it’s more risky to continue to break bones than the “outside chance” of getting cancer. The C word is scary. I’ll keep reading your reviews, but need to decide soon. Wish me well. Lynn. • Vivian Goldschmidt, MA March 8, 2015, 3:14 pm Hi Lynn, Good for you for asking questions and doing your research. Personally, I can’t imagine risking cancer to take a dangerous drug that, ultimately, won’t be good for my bone health – especially when there are effective, drug-free options like the Program. 🙂 • LynnCS March 21, 2015, 3:23 pm Hi Vivian. Thanks so much for the reply. I used it for 2 months but can’t afford it. He has given me some forms to apply for help from the company and says…get this…”You have more concern over broken bones than cancer, at your age.” I am concerned about the bones, but am trying to up my exercise and keep an alkaline food plan. I hope it is good enough. Scary! • Vivian Goldschmidt, MA March 22, 2015, 2:48 pm I’d say both are important health concerns! Kudos for sticking to your beliefs, and choosing to go drug-free. • Christine October 11, 2015, 5:46 pm I agree 51. Danielle February 19, 2015, 6:18 pm I am a 29 year old registered nurse and currently nursing my 9 month old daughter. 5 weeks ago I fell down the stairs, fracturing my T8 vertebrae. The official diagnosis was a 27% compression fx along with several other injuries including 2 bulging disks. I was put in a brace preventing me from bending. At my 2 week follow up appt the fracture had worsened to a 30% fracture. My neuro surgeon recommended I see a bone health specialist. I saw her today and she has recommended I take Forteo for a month to try and avoid surgery. The issue at hand is I have multiple bilateral kidney stones and have had these for the past 2 years. She is not sure if I can start this medication due to these stones and the possibility of making them larger or even multiply. I will have lab work done tomorrow to assess the risk. I’m also nervous that it may harm my child therefore I will have to stop breastfeeding. Now reading about the cancer risk scares me. I’m only 29 with a new family…not sure it’s worth the risk. • Vivian Goldschmidt, MA February 20, 2015, 10:52 am Danielle, my heart goes out to you – it sounds like you have a lot on your plate! The decision to take drugs or not is, as always, entirely up to you. I can tell you that drugs do not heal; they artificially mimic the healing process and/or manage symptoms, and there is always a price to pay. You don’t mention whether or not you have the Program, but here’s a note on healing fractures. It’s important to make sure that sufficient bone and collagen building minerals are available, such as calcium, magnesium, zinc, boron, manganese, and copper. Vitamin K and D3 are also very important, as well as B12 (preferably taken with the rest of the B complex) and Vitamin C. Also, some antioxidants (lycopene and polyphenols) help build new bone. Maintaining an alkaline body pH is also very important. All these recommendations are also applicable to the prevention and reversal of bone loss. • Me September 13, 2016, 3:30 am What is “the program?” I Have numerous side affects from Forteo only taking it 6 wks off for 1 wk to see if issues subside • Vivian Goldschmidt, MA September 13, 2016, 7:26 am “The program” refers to the Save Our Bones Program. 🙂 52. Lindy January 31, 2015, 10:48 pm I have been on Forteo for 18 months. No side effects, no problems. My first bone scan after a year was status quo (-3.3 in the hip), but no deterioration either. I am 52, and my doctor, who is in contact with another osteo specialist, highly recommended forteo for 2 years. I am small, thin, & physically active with a family history of osteo. I will follow through with treatment in the hopes I can keep what I have and maybe even ski again. 53. GEORGE January 21, 2015, 4:47 am I am 25 and suffered a intracapsular femoral head fracture on my hip. It has been 3 months and it is still of nonunion despite my femoral head being alive.I visited another doc for a second opinion and he recommended Forteo for 1 month. Hopefully it will heal it right up or i will need hip replacement. Does anyone have their hip healed thanks to this drug? 54. Richard January 17, 2015, 9:23 pm I am a 55 yeard old hypo-gonadal male with osteoporosis. I have been on Forteo for almost two years now. I have had no side effects except pain and swelling at the injection site. Prior to starting Forteo I had fractured 9 vertebra. Anything from bumping my head getting in the car to walking would fracture one. Since that time I have gained some height back and to my knowledge have not broken any more. I am due for a scan soon. At that time my rheumatoligist and I will decide how much longer to continue treatment or consider alternatives. • Andre May 16, 2015, 5:55 am Hello. Are you serious? Did Fosamax help you restore height you lost due to vertebrae fractures 55. Mary January 15, 2015, 9:20 pm After 2years on Forteo my COPD has disappeared,no more steroids,or antibiotics. Thanks to my Doctor for a new life • Sarah February 26, 2015, 12:42 pm please tell me more! 56. bonnie wegener November 27, 2014, 12:08 am Send study information on how many people were in the study & how mow many people developed cancer • Fred April 21, 2015, 5:02 pm You won’t see that from this site as it is designed to scare you away from a drug. What this site fails to convey is that the rats studied have open epiphysis which allow the bones to grow unopposed and that humans have closed epiphysis. The site also fails to mention how high the dose to the rats was…like 60 times the human equivalent. You should all ask as many questions of this site as you do your doctor. No drug is right for everyone and no website driving you away from a specific medicine is without agenda. 57. Hannah November 9, 2014, 10:43 am My mom has taken Forteo for 18 months now and plans to finish to the two year limit. She has not had any major side effects and is wondering if there’s a way to take a maintenance dose past the 2 years. Her reason for choosing to take Forteo in spite of the risks was very well researched as she is an CRNA/RN. She opted to give up her other medications and their potential side effects for this one because she has had 3 spontaneous fractures of vertebrae and ribs from simply bending over. She is a care taker for my father and is a very active 77 year old. She has not had any further fractures and feels she would rather take the medicine than live Life as an invalid. The incidence of sarcoma is rare and everyone reacts to medicine differently. While this may not be for everyone, It is working well for her. I’m thankful she’s been able to retain her quality of life and has not had to slow down or live in fear of daily life. • headdr23 November 10, 2014, 10:45 pm I have been taking forteo for over a year and a half and have yet to ever experience a side effect. I am not taking the drug for complete osteoporosis reasons, but rather due to a bone disease called hypophasphatasia – causes me to have numerous bone fractures (you can look it up if interested but to long & detailed to get into). There is no cure for my disease and this has been a Godsend in my experience. I got no new fractures while taking the drug. I realize all medications come with risks but IMO its been worth it. • Ron April 19, 2015, 9:44 pm headdr23, I am so glad to see your post. I am 56 and have recently been diagnosed with hypophasphatasia. I am currently trying to heal stress fractures in my left foot and an acute fracture of the 4th metatarsal in my right foot. They don’t seem to be healing and the offer for using forteo may come soon. I would love to know more about your experience. Please let me know if you would care to share. I won’t take up too much of your time. Gratefully, Ron 58. Barbara October 4, 2014, 3:55 pm I started taking Forteo. The first week I felt fine. Then I starting getting very constipated. Then it went to extreme tiredness, muscle weakness, a fuzzy brain. I was having trouble walking, and trying to cook dinner was a joke. I felt I had to hang on to things to keep upright. I was sleeping too much. Driving was hard, as I was afraid that I would fall asleep. I was actually afraid that I would go to sleep and not wake up. As soon as I stopped taking the drug I was back to myself! 59. Angela R. September 20, 2014, 5:19 am CAUTION!!! MY MOTHER TOOK FORTEO FOR 2 MONTHS AND NOW HAS A HUGE, AGGRESSIVE SARCOMA ON HER THIGH, RIGHT WHERE SHE INJECTED FORTEO. She has never been ill, is 72, 120 pounds at 5’2″, and had NONE of the supposed RISK FACTORS. Her doctor did not tell her of this risk. PLEASE DO NOT TAKE FORTEO!!! • Helen November 21, 2014, 4:34 pm OK. This drug MAY cause OSTEO sarcoma. The Forteo probably has NOTHING to do with a sarcoma..big difference. She may coincidentally have a soft tissue tumor that had NOTHING to do with the injections. I’ve been in medicine long enough to understand cause and effect. It used to be whenever a woman (or man) developed breast cancer they would link it back to a bruise, hitting your breast on a corner of a table..etc. With enough clinical research we realized that the contusion had NOTHING to do with breast cancer. Read the clinical findings. Not anecdotal experiences. 60. Hadar September 8, 2014, 1:41 pm My mother is a 54 year old woman with osteoporosis. After breaking her hip bone earlier this year, she was advised by her doctor to inject Forteo once a day for the next 18 months. Today was her first injection, and the side effects she described were.. bizarre.. nowhere to be found on the pamphlet that came with the drug (and of course her doctor was too busy to take her calls) so I’m asking you guys: did any of you experience severe nerve pain after taking Forteo? She described it as starting from her lowest vertebrae and advancing through her spine until her mid-back, starting approx. 15 minutes after the injection, and weakening until disappearing about an hour later. She has injected herself many times before so she probably did not just hit a nerve while giving herself the medication. Anyone? Thanks a lot • Linda Q October 20, 2015, 3:34 pm Hadar, it’s really unlikely that forteo is causing the problem since it is hormonal and works very slowly and gradually, which is why you have to take it for so long to get the benefits. There’s a possibility that it might be due to a sensitivity to one of the inactive ingredients in the solution. I would suggest keep using it for awhile, see if this doesn’t just settle down by itself. Ask the doctor if reactions to the other ingredients could be the problem, if not, it may be psychological. 61. Jane E. August 23, 2014, 11:32 pm I have had several fractures in my spine. I was on Fosamax for 2 years and was getting progressively worse. My rheumatologist recommended Forteo. I just finished my two years of it on 8/21/14. I am scheduled to have my BMD test this Thursday. I will let you know if it helped me. I’m not sure if I had any side effects from Forteo or from something else. I had extra anxiety (I’m an agoraphobic so I’m anxious anyway). I would have days where I was tired (I’m also 68 so that could be part of that). I’ve had a few days of depression but nothing too bad. As I understand it, after your first year on Forteo a BMD will not give you an accurate reading of what it is really doing. It can be very misleading. I just broke my little toe less than two weeks ago and it is healing faster than I ever expected. My doctor told me they give Forteo to patients who have broken bones as it helps them heal faster. I have to think that’s what went on with my toe. The bone cancer scares me a bit. I’ve already had cancer once. But laying in a home waiting for a broken hip to heal scares me also. Best of luck to all of you with osteoporosis! • Lora February 17, 2015, 2:02 pm My doctor wanted me to take Foreto for two years because of osteopenia – not osteoporosis- in my left hip. (None in right hip or spine). I’d rather risk a fracture than a deadly form of cancer. • Vivian Goldschmidt, MA February 17, 2015, 2:53 pm I couldn’t agree more, Lora! • Fred April 28, 2015, 1:55 pm Vivian, how many osteosarcoma a have been associated with this drug in the decade or so it has been in the market? Why don’t you share that information with this websites audience. • Renee B November 4, 2014, 6:52 pm Jane E. – any update? How was your BMD testing? Do you think the treatment was worth it? Thanks 62. Andrew Barovick August 1, 2014, 12:11 pm There have been a few instances in which Forteo caused Guillain-Barre Syndrome (GBS), or so the patients believe. Anyone know anything about this? • Allen May 31, 2015, 4:13 pm In 2006 and 2007 I had daily Forteo injection. Halfway through the treatment period I had most of my teeth removed due to necrosis in my jawbone. The day of my final injection I had numbness in all fingertips. The next day I was diagnosed with Guillain-Barre Syndrome, paralyzed from feet to face. Can’t say for sure Forteo caused GBS but I believe it did cause the jawbone necrosis. I wish I had not been so quick to accept the Forteo treatment. • maa November 14, 2014, 9:32 am I had Guillain Barré syndrome shortly after starting Forteo this year? Have you heard anything? 63. Anonymous May 14, 2014, 8:47 pm I was on Forteo for 4 and a half months in 2013. From start to finish, it was a nightmare. Severe asthenia (fatigue) from day one, sleeping in excess of 12 hours per night. Brain fog developed from the onset. Affected my memory, could not work while taking the drug. After 2.5 months, Forteo triggered onset of thrush and candida, followed by pelvic rash and burning that spread to welts and lesions on pelvic floor. It has taken nearly 6 months for the rash to subside. I stopped the drug for a couple of weeks while fighting the thrush and candida but doctor recommended trying to continue as long as I could. Eventually I advised my endocrinologist that the side effects were so severe that my quality of life had been impacted. One of the most disconcerting aspects of this situation, is that the endocrinologist did not have any idea how to treat the side effects, and 2 of the 3 OB/GYNs I saw were also ignorant of the drug or its effects. I am still suffering from extreme fatigue and a severely weakened immune system as a result of this drug. Would not recommend it to anyone. While some individuals appear to be tolerant of the drug, others are clearly not. My brain fog has been clearing up as I put myself on a full body homeopathic detox program. I am now following a mediteranean diet, with Vitamin D, K2, and dietary calcium intake. I wound up with calcium deposits in soft tissue as a result of Forteo and it is not clear when this will clear up. • Gigi November 3, 2014, 4:37 pm I am 60 years old and started Forteo in March 2014. I thought everything was going well, until I began to get weak and couldn’t cross the room without stopping to catch my breath. My weakness has increased to the point that showering has become tricky. I have dizziness, feel faint, very week, have yeast infections on my skin that won’t clear up, my hands are shaking so bad that I can hardly sign my name. I stopped taking Forteo about 10 days ago (it is now Nov. 3rd) and have seen no improvement in my health. My doctor has run a number of tests on me and finally is sending me to a cardiologist because some of my symptoms mimic heart failure. I’m at the point that I almost hope it is heart failure, because that can be treated and I have the possibility to return to my much more active self. This is horrible and I know in my heart that this is caused by the Forteo. Please don’t take Forteo. It can ruin your life. • Vivian Goldschmidt, MA November 4, 2014, 8:04 am Gigi, I am truly sorry to hear about your experience. I want to encourage you, though – your body was made for health, and if you want to get the Forteo out of your system faster, you might consider doing a cleanse like OsteoCleanse to give your recovery a “jump start.” Hang in there, and nurture your body with plenty of pure water, healthy Foundation Foods, and whatever exercise you’re comfortable with! 64. Lynn May 12, 2014, 6:07 pm I am 63, began taking Forteo in Jan. 2013. I’ve had no side effects. I broke a finger in March 2013 and it healed faster after surgery than was predicted due to the Forteo. My doctor sees me every 6 months for bloodwork. I take calcium and Vitamin D-will have bone density test in Dec 2014. I did not want to take it in the beginning but my doctor said that my risk was very high, as I had already had a broken wrist and small break in my lower back. No one mentioned that the manufacturer will call periodically to monitor all side effects. I signed up for that the first year. They are VERY thorough in helping the patient. Medicine does have a lot of unknowns. That is why they call it “practicing” medicine. Everyone is different, what works for one will not work for another. Deciding if the risks are worth it is what is important. When my doctor told me that someone else would have to take care of my handicapped daughter for 6 months if I broke a hip made me decide to take the injections. Sometimes the circumstances in our lives make the decision for us. Please keep in mind that ALL Medications we take can have terrible side effects for some people. Thanks to all who shared their stories. I wish you all the best because it’s not fun making these decisions! • Vivian Goldschmidt, MA May 13, 2014, 11:49 am I am glad you’re doing your research, Lynn, and are comfortable with your health decisions. 🙂 • Terry September 5, 2015, 11:44 pm I have purchased your book Vivian. I will say, it was encouraging. However, I have followed the program and my bones have become so much worse. I am sitting here reading all the good and bad about Forteo. I was told by two different physicians to take Forteo. I told them about the horrible things I have heard from your book. They feel that I need to do something since I have severe scoliosis and cannot have surgery because the past two years I have been reading all the negative reviews and became too frightened to take the drug. I am now in tears not knowing what to do. I just know if I don’t take something soon, I am slowly getting worse and I cannnot have any surgery with my condition as it is. I wish everyone the best and if you have had any luck with bone growth, please let us know what you took and if it worked at all. I really need some good advice since surgery is needed in the near future, but not without a strong foundation for the screws to adhere to. Thanks for reading and any help you can offer. Terry • Me September 13, 2016, 3:43 am What Book? 65. jane broderick February 25, 2014, 2:13 pm My STUPID Dr, gave me Forteo for 2 years. Each and every day after injection I hung over the toilet , like a Chemo patient. My first injection put me in the ER with a very rapid heart rate, vomiting, and horrible sick feeling, sweating, etc. He told me it was ALL in my head ? Really ? I would love to sue him!!!!! For what he put me through. After I finished 2 years of Forteo, the dexa scan was done, it did NOT help at all ! These drug companies are so crooked and what they put patients through ! Now years later, I am suffering with all this bone/muscle pain, autoimmune diseases, and I blame FORTEO ! think twice before you even think about using this HORRIFIC drug !! • Vivian Goldschmidt, MA April 17, 2014, 8:36 am I am so sorry you had that experience, Jane! I am glad that you now know you do not have to take any drug that you do not want to. It’s your health and your body – your doctor is not the one who suffers any side effects…YOU do! Now that you’re off Forteo, your body can heal and your bones can build themselves naturally. 🙂 I am glad you found this Save Our Bones community! • Terry September 5, 2015, 11:49 pm Why are you telling people that bones can heal naturally? Vivian please share advice on dexa scans and information to really help people. I notice you only answer the posts when it concerns the bad experience people have had with the drugs. If there are good experiences out there, you don’t comment. I am not saying I am for the drugs, but I think since I have purchased your plan and it didn’t work for me, I believe we should hear other options as well and comment on them. Thanks, Terry 66. Mike February 2, 2014, 7:08 pm Forteo is a good drug. Using now for nonunion. The rats in cancer study were poor models for humans and intensive tracking of humans has turned up nothing. Same with monkey tests. A little knowledge is a dangerous thing. Listen to your doctors, not bloggers. • Simone July 13, 2015, 7:45 pm I have a non union of my tibia. I’ve been dealing with this since 2012. I just had a rod put into my leg and the surgeon wants me to take 3 months of Forteo. I’m a bit concerned about the side effects. How are you feeling now? Any problems since you stopped taking it? Thanks for any info you could provide. • Mike March 10, 2014, 12:24 am Update: Have been taking Forteo for six weeks. A hip fracture caused by a bicycle crash was only 30 percent healed after four months. The hip was painful, particularly with full load bearing (standing on one keg). Not only can I stand on the injured leg w/o pain, I spent the weekend running around theme parks. Limp is gone. This drug has incredible potential for bone nonunion and speeding up fracture healing. • Terry September 5, 2015, 11:51 pm Thanks Mike for the feedback. Did you have any bad experiences with the drug Forteo. I am worried about taking it, due to the side effects. • jane broderick February 25, 2014, 2:15 pm Mike, Are you kidding ? Some Doctors do not know the first thing about Drugs, the PHARMACIST’s are the ones to listen to ! 67. Cindy January 2, 2014, 9:18 pm Comment: 2 Jan 2014 – My Doctor put me on Forteo in January 2004 after much consideration. I did the injections for 18 months. The Doctor told me I could never take it again after that, even though it was recommended for two years. It was a desperate attempt to put some of my bone mass back. My Dexxa scans showed I could expect a broken bone anytime. I gained about 30% of my bone mass back!! I do continue to take calcium. I did not experience any side effects. My recent Dexxa scan Sept 2013 shows my bone mass has still remained stable since 2005. I did not know about the bone cancer aspect of the drug when I was taking it. I chose to take it for two reasons. 1. My Mother suffered with severe osteoporosis for 30 years before passing. I was my Mother’s caretaker for 20 of those years. 2. In 2002 I became my husband’s caretaker. I offer no answers for others. I do have a question. Does Forteo keep working long years after finishing injections? It seems it might considering what others have said. What have others experienced? Thanks for letting me have my say. • Vivian Goldschmidt, MA January 4, 2014, 8:14 am Hi Cindy, Great news about getting 30% of your bone mass back! I do understand your concerns about the Forteo staying in your system after finishing the injections. According to a comprehensive data sheet on Forteo, the resorption and elimination of teriparatide (Forteo) are quite fast (which is why the injections are daily), and it is not likely to accumulate in bone or other tissue. You can read the entire data sheet at this link: http://www.medsafe.govt.nz/profs/datasheet/f/forteoinj.pdf 68. Gayna Ryan December 3, 2013, 1:02 am My mother has been taking Forteo app. 3 months. Has anyone had a memory problem from this drug? It has come on very fast and severe and we are trying to figure out why this is happening. She was fine before the drug and I don’t know if the drug is the problem..stumped • Sam December 12, 2013, 2:49 pm Girl friends 90 year old mom took it for a month and all sorts of mental problems ensued. Taken off Forteo at 1 month ( 1 month ago ) she IS doing better. The doc said it was the excess calcium – ( and I wonder why and what do you expect from a 90 year old? Why why subject someone at such an advanced age to all the drama of Forteo? And agreed, why trade potential bone fractures for potential cancer? As wee, All the data shows people at 90 have the largest percentage of reactions by any age group – maybe the doctors get a kick back? 69. Mary November 26, 2013, 12:06 am My mother took Forteo for two years. She has now been off of it for about 6 months. What we have discovered in that time is that it not only lays down new bone it also will form bone spurs, and kidney stones. She is 85 years old and never had any problem with kidney stones. We have no history of kidney stones in the family. She was recently admitted to the hospital and discovered a 6-7 mm kidney stone. Most kidney stones are between 2-3 mm. She has a boulder which she will need surgery to get rid of. We can only attribute the stone to Forteo. Our doctor never discussed this possibility with us. If we would have known this side effect we would have done more research on this drug. I am not sure that the “cure” was worth the side effect. 70. Charlaine November 21, 2013, 5:02 pm Hi, I à ma french canadian ( so excuse me if my english is not as well it shoud ne…). My doctor suggestion me to use forteo cause i have problem to control calcium in my blood. I do hypocalcemia. The thing is that i would use forteo longer than 2 years’s as recommended, it would be for the rest of my Life. I am very anxious cause the risk of cancer bones. Also, my mother as myeloma multiple, i Wonder if the risk would be stonger for me. If you have any answer just let me know ! 71. Helena October 28, 2013, 8:45 am I started Forteo a few weeks ago, I am a 35 year old female who is taking it post spinal fusion for a fractured vertebrae with spinal instability after an injury. I am taking Forteo to encourage bone growth for the fusion. I have mild osteopenia in my hips, as well as a rare genetic condition that effects my collagen. Essentially, in layman’s terms I make defective collagen and collagen is an important part of bone formation. I had a lumbar fracture, and during surgery my physician noted that that bone was slightly soft – common with my condition. My mother and I are both nurses and discussed the pros and cons of the medication before I started it, additionally I discussed it with a couple of my physicians. I made the decision to take Forteo. I will only be doing a short course of it, and considering the risks of not having a positive outcome of my fusion should I not form a solid fusion the benefits outweighed the risks. For me the injections are not a big deal, no different than a diabetic really. The needle is tiny, and painless. I can not speak to joint pain as my genetic condition causes widespread joint pain. I haven’t noticed any side effects outside of it making me sleepy the first few days I took it. Overall I am confident in my decision and I am thrilled that there is a medication that encourages bone growth given my current post surgical status, and risks of a poor fusion. • Lyn October 15, 2016, 5:25 pm Hi Helena, I am wondering how you are going now? I presume you have OI? My husband at 54 has just been told that this is the likely cause of his terrible T scores. I am trying to gain as much iformation as possible before we make the decision to try this medication after Fosomax and Prolia injections seemed to do very little. Well he has had an incidence of AF which was very scary! 72. Patricia October 8, 2013, 2:47 pm This week I should be starting my third round of Forteo. I’ve been very tired since starting and have cramps in my legs off and on. I have had 2back surgeries 3yrs ago. I have back pain. Last week I started with horrible, horrible pains in my back. I need assistance in getting up from bed or chair. I think this grabbing severe pain is muscular. Never had it before. I stopped Forteo on Saturday. I’ll see my Dr. next week. Has anyone had this problem or other muscular problems? I don’t think I’ll be goin back on this drug. • faymari May 26, 2016, 7:27 pm I have experienced overwhelming tiredness especially in the legs,I have experienced a complete mental break down, I started not to give my take on this medicine forteo as my family thinks its all in my head,since iv’e always had thoughts about taking any medicines,I don’t even think the same as I once did,there is a metal taste in my mouth and I shake at times,I was taken off forteo when my breathing took a dive from COPD will not be starting back got to find another solution, for my bones are crumbling as I write this…. 73. Terri Leffler August 23, 2013, 1:30 pm I was just diagnosed with osteoporosis , what is the natural way of treatment ? 74. Mary Sheets July 29, 2013, 10:01 am I have been using Forteo for 3 months. The first month i experienced joint and muscle pain in the 3rd and 4th weeks. Since then I have not experiencied any pain outside my usual aches. I did have a dental implant done and my periodontist noted that bome had grown over the implant during the 4 month waiting period. I am taking Forteo because of previous bone lose in my jaw. I now have osteporosis in the neck of my hip that continued to progress with calcium and D use. I have never used bisphosphomates because of the bone loss in jaw. I am guilty of lack of regular exercise. When i do vigorous exercise i have a two day recovery time. I am 59 years old 5’4″ and 144 lbs. I do not have any other health problems except for skin cancer removals due to over exposure to the sun as a youth. I think I should be monitored more closely by my doctor while using this drug. 75. Sandra Hardy June 4, 2013, 6:24 pm I have been using Forteo for almost 2 years and my bones have gotten much worse. I want to stop the Forteo but my doctor won’t hear of it. Said I have to take it until mid September to get the full effects. Before taking it I had broken both collar bones, left worst and right hip. Since on Forteo I now have osteoporosis in my lower spine, right forearm and left thigh bone. This meds has only made it worse. On the Forteo site it says that if your bones worsen to stop taking it immediately. • Jim Evans August 25, 2013, 7:11 pm I broke my right hip at 43 years old. That’s when they discovered severe osteoporosis. I was on Fosamax for 12 years, when I broke left hip. I was taken off Fosamax, and put on Forteo. I’ve been on Forteo for 14 months. The bone density scan done two months ago showed that my T Score in my lumbar spine had dropped from minus 3.1 to minus 3.7 during that first year of Forteo, yet the doctor tells me to continue the injections…. • Darlene February 18, 2015, 2:25 pm In my opinion, you both should seek new physicians. Sounds like the doctors may be “bought” by the perks they are receiving by placing patients on forteo and other drugs for the “companies studies”. I have a friend who worked “the other side”, and he said doctors “win” cruises and other trips for pushing their new pills, thereby using you in the blind study. You are the only one blind to that fact. IF you are having any doubts about your doctors motive, seek care elsewhere asap!! Doctors are pretty easy to replace now-a-days. 76. Sandra Long April 25, 2013, 5:38 pm First and most importantly I would like for everyone making comment here to be assured that I believe in freedom of choice. Having said that, please let me share with you what has happened to my Mother since her doctor put her on Forteo. Although it is very expensive, she able to acquire this drug for free because of being on a fixed income. Anyway, since taking this drug she has had more fractures, aches and pains and now the doctor is telling her that her heart is of a concern. (Heart disease does not run in our family, that is, not until the doctors start prescribing pharmaceuticals.) Further, when she fell and broke her arm three years ago, she had been taking some other osteoporosis drug. Even though she was put on Forteo, her arm looks no different than the day she broke it. When she faithfully took Fosamax, I was taking her to the hospital every six months to a year for a procedure to put medication on the inside of her esophagus at the opening to her stomach. So, now y’all tell me . . . are these drugs worth all that? And now I ave read that this Forteo can cause bone cancer?? So, then isn’t Forteo an oxymoron? Will I take these drugs????? I think not! TY for letting me share. 🙂 • tony hauptman April 20, 2014, 5:37 pm there is a big picture most people are missing, and that is that drug companies are big businness in the u.s. more than anywhere. the u.s. is #1 in the world in spending in health care, yet is like #20 in actual care. so that tells you the u.s. is doing something wrong. You are lucky to find a SMART doctor who actually gives a damm about you and not his income, those are few and far between. 77. Mary April 21, 2013, 11:23 pm Should I spend the (which I don’t have) on it? My mom had amazing results fro this med.. I am going down the same road and DO NOT want to suffer as she did before she received Forteo – but I don’t have the requisite 10,000.00. I am otherwise a young 54 year old. My daughter is 10 years old. What should I do? • J December 15, 2013, 9:25 pm Hi. To respond to your question, please note that all pharmaceutical companies offer financial assistance for their expensive medications. All you have to do is ASK. If you qualify, they could pay up to 100% of your treatment as long as you need it. Try, worth a shot. Most people qualify for at least 50% coverage. • John April 25, 2013, 12:10 pm If you have severe osteoporosis, you need to look at your risk factors for vertebral fracture or hip fracture. These both come with extreme costs associated with surgical repair and after care. The cost of Forteo is a small price to pay considering the fractures it prevents. 78. linda sickora April 17, 2013, 1:28 pm i am to begin forteo treatments on friday. my concern is that i have both myasthenia gravis and asthma. how will this affect me or should i not even think of starting forteo injections? • Vivian Goldschmidt, MA April 17, 2013, 7:23 pm Linda, your health is in your hands – the decision is up to you! Armed with information from this site, you are free to choose whatever you think is best for your body. The important thing to remember is that you do not have to take Forteo – you do have a choice! 🙂 79. mary ann March 16, 2013, 10:22 pm i am 80, been on forteo for 7 months. i have alot of aches and pains but i had them before forteo. i will continue forteo and hope that no more pains occur. if they do i will deal with it. 80. Pilar March 7, 2013, 7:33 pm Well, I am a 58 year old, I was diagnosed with osteoporosis back in 2002, my primary doctor recomended Foxamas, took it 2 years, the disease didn’t improved or got worse, then I think took actonel for another 2 years, no results, not getting better or getting worse. Then in 2009 I was offered Forteo. Something very important my primary and I we had a very trusthful relationship. She laid all the side effects of forteo but also maybe the benefits. So we weight in was was the best route for me, and we choose to go for Forteo. I was very pro-active so I find out that you have to have a thyroid test done, and a parathyroid which the results shown me that it was low with the hormones.My treatment went by, my result for the oesteoporosis shown an improvement in 2011 when I finished it. I didn’t have any side effect knock on wood, and I really would like to go back with Forteo, the reason being is that if you have any side effects you can stop the treatment right there. There is other treatments that they give you one injection per year and what happens if really you get sick with it? Since the other medication didn’work on me I really would like to find a way to go back with forteo. I haven’t been taking forteo almost for 2 years know and the results of my last test show that again the disease is not getting worst. 81. Cecile February 20, 2013, 12:57 pm My good friend, Anne, has been taking Forteo for less than a month. She is only 50 but just two days ago she suffered an aneurism and nearly died!!! She has never had anything like high blood pressure, etal. yet her bpressure went up to 170 over 90. Anne is a very slight, underweight woman. My immediate thought was this had something to do with Forteo. Anybody know anything on this? Thanks • Dee Allison October 9, 2014, 5:07 pm Re BP: this med can cause swift bp changes with change in position. I am always the canary in the coal mine, and have had almost every side effect. I have autoimmune disease and chmical sensitivities. I fear this drug is not for me. To top off the headaches, the entire days of severe nausea, the diarrhea…80 lbs now, yesterday my bp began spiking…158/?? Can’t recall the bottom no….along w terrible headache. My cardio tells me that if my bp is over 100 Systolic at bedtime, am to take extra half of bp med. the last time I was 158/ I was in an ambulance, going to rule out MI. (hrt attack).good luck, all, and thanks. 82. Vivian Goldschmidt, MA February 5, 2013, 4:24 pm Remember, density tests do not measure tensile strength or flexibility. 🙂 That’s more important in preventing fractures than high density scores. Mainstream medicine focuses so much on density because it needs numbers (i.e. fixed parameters) to prescribe drugs, so most doctors follow the same protocol. While density is an indicator of bone metabolism, the main focus of bone health is simply to prevent fractures, and less dense but healthy and renewed bones have better tensile strength than thicker, denser, older bones. I explain this in detail in the Save Our Bones program! 🙂 • Lyn October 15, 2016, 5:32 pm My husband and i are trying to make the decision what to do and how to manage his osteo. We are waiting for the diagnosis however it seems that he has Osteo. Imperfecta. Does the Save Our Bones Program work in conjunction with those on Forteo? 83. John H. Douglas January 19, 2013, 5:01 pm Generally speaking Forteo is supposed to be taken for 18m months to two years. I took itg for ten months and got curious as to what effect it was having on bone dxdensity.i read and was told that an improvewment of 1 to 2% is expecteed after two years.Whdn i asked for a bone density test after 10 months i wsaS ALMOSYT LAUGHED AT..AFTER all IT TAKES two years to even see the slightest improvement,AND MEDICAREwill not pay for a test done in less than two years because the Forteo would not have had a chance to work in that short a period of time. eI told them i would pay for the test myself and insisted on taking it. I took he test and found that bone density had improved not one or two% but 22%!!!!!!!i went from severe Osteoporosis to Osteopena. Granted i exercised daily and Drank and ate DAIRY PRODUCTS but 22% in 8 MONTHS!!! • Lyn October 15, 2016, 5:33 pm Hiya, so that was 3 years ago. Have you managed to maintain that gain? and if so how please? • Jim October 1, 2013, 3:42 pm I am 70 year old male and my endo doc wants me to start with Forteo in November. I have severe ostop. in my hip and spine….no other medical problems so far…… Your comment almost seems “to good to be true.” I have been excersising and taking loads of vit. and mineral suppliments and eating dairy for the first time in 30 years since i was told I have osteop 9 months ago. All side and lower back pains are gone now (two rib bones were broken). My vit D and parathyroid numbers are all in the normal range now. I wonder if I should take the drug at all. {Please comment…… • timi fl July 1, 2013, 6:19 pm hi hi so i have been reading most comments about forteo and does any body have the bone creaking ? I feel and i hear sounds like my bones cracking from all over my body. tips of toes to up and out to fingers and up to the shoulders and neck with a few aches in my skull. these are all random. but sometimes intense enough to wake me. i have very tired spells, and then i can go a couple days with no problems what so ever. my bone scan was 3.4 or 4.3 approx. and it must come up to qualify for lung transplant. i lost most of my bone density in one year probably due to the prednizone for the lung problems my lungs were ok in jan 12 and oct 12 to much osteopourus to qualify I thought forteo was the only bone building drug. I thought i was told that fosomax and all the others that we have all been on were medications to prevent bone loss. but could not build bone once it was lost. i eat lots of green vegetables cheese beef chicken water I would like to hear what other people’s experiences have been Thanks and have a Great Day. Timi • Dee September 27, 2013, 1:17 am Hi Timi, I’ve been on Forteo for two months now and also experience the bone creaking and cracking. When I first start with a fresh batch at the beginning of each month I experience 3days of severe headaches and fatigue and joint stiffness. The rest of the month tends to fluctuate with days of normality and days of fatigue. My kidneys seem to be working overtime and I have to urinate frequently. This can vary with the odd day being so extreme tha I don’t know where all the water is coming from and I feel really dehydrated. I’ve partially solved that problem by mixing coconut juice with the water I drink. I live a very healthy diet with lots of fresh vegetables and fish, minimized the sugar and other toxic substances out of my diet and I think it’s this that’s helping me. Foreo is my last hope since nothing else has helped so I’m determined to continue. • Dee August 17, 2014, 4:06 am It’s now 12months since I started with Forteo. I found I had to stop the calcium supplements to reduce the frequency problem. My dexa scan showed an improvement in my spine from -3.7 to -3.1 and slightly less improvement in the hip. However my wrist has worsened to -4. Will continue for final 6 months but a bit disappointed by these results, was hoping for more. It’s the only osteo medication thatI’ve been able to tolerate. • cathy November 19, 2014, 11:02 am 6 months on and feel all the same effects, tired!!! headaches, creaking am praying this works, age 61, legs hurt every day, how did your final come out? please let me know 84. marymyers January 2, 2013, 2:40 am It has been 1 year since I had forteo…for 2 years I had the shots every day..I had no bad reaction during that time and my bone scan showed a 22 percent improvement .I had had no luck with the medications I had taken for several years previous..so I am very grateful for my Dr prescribing forteo Mary 85. Dale December 18, 2012, 9:59 am I used Forteo for 2 years. My T score for my hips went from -3.4 to -2.8 so the drug seemed to increase bone during that time. Because of a problem with reflux— I cannot take any other type of osteoporosis medication orally and I did not want an infusion drug. Forteo was my only choice. 86. Bettyanne December 17, 2012, 5:30 pm OK, I’ve been on Actonel for as long as I’m allowed (4.5 years), Reclast for 2 years and Forteo for 2 years. According to my doctor the only two things left for me to go on are Evista or Prolia because she will not recommend I return to any of the others I’ve tried. Since my T scores have continued to look bad (now – 3.4), what are my other options? Can I just eat right, take calcium, etc. without fear of further deterioration? 87. Kathy December 17, 2012, 9:59 am I have been taking Forteo for 6 weeks. Side effects have started such as muscle cramping and numbness around my mouth. This is such a highly recommended drug for the severe osteoporosis I have, but these side effects scare me. I am also a cancer survivor and the warnings about cancer this drug can cause is very concerning to me. Has anyone else had these side effects? • Donna February 8, 2013, 9:39 am I too am a cancer survivor, and have had the same side effects as you…muscle cramps, pain behind knees and knee joints. I also got extemely itchy after taking Forteo after 6 weeks. By 2 months I was so itchy I couldn’t even sleep. Pharmacist and dr, said to stop for a few day…the itchy part stopped alost immediately, but the joint pain lingered. So I stopped for 2 months! Now I face the delemia…do I take it again and face joint pain, itchy nights and days, and possibly cancer? Or do I give it the old “college try” just one more time? My numbers were also -3.4 Any input would be appreciated • chana December 30, 2012, 9:38 pm Decided against Forteo because of “black box” and went on Prolia. I hardly felt the pinprick in my arm and have had no negative reaction. Continuing to drink 3 glasses of milk per day. FYI • John January 8, 2013, 5:40 pm I should also note that the black box warning refers to rats, which have VERY different bones than humans, and even the rats had no problems when given normal human doses…read the warning…osteosarcoma was dependant on dose and duration…not seen in rats until 3 to 60 TIMES the normal human dose….suprised osteosarcoma is the only thing they got at those levels…lastly, rats were injected with forteo which is a human hormone. • BadToTheBone April 14, 2013, 8:50 pm This is a great point and often missed in the scaremongering. What is even more problematic is that rat bones grow over the course of their life while humans do not. The high levels of Forteo given to them resulted in a small percentage of rats getting cancer in only those new growth areas at the ends of the rat’s bones. I was on Forteo for a year and had 12% increase in bone density but it stopped working after that. • John January 8, 2013, 5:26 pm Prolia works by turning off a natural process of the body…bone turnover…long term effects of this can include additional fractures. BMD or bone hardness is only one contributing factor to overall bone strength…the most important factor is bone quality. Prolia can be a good option only after bone quality is addressed. 88. Elizabeth December 13, 2012, 1:12 pm I have just completed 2 years on FORTEO, and my bone scan reveals no improvement in my bone density. Having paid approx. 25,000 of my own money on the understanding from the doctor that my body would receive a “real boost” from taking this expensive medication, I feel very annoyed and disappointed. Annoyed because I would never have agreed to taking FORTEO on the basis that it ‘might work’. The story line given to me 2 years ago by the doctor, contradicts in every respect the explanation offered this week after my bone density results. I was told that FORTEO does not in fact have an effect on bone density, but rather strengthens the bone itself. However, there is absolutely no evidence to support such a claim. As of this week, I am told by the same doctor, that there is no test to the effectiveness of this very expensive medication. It is all guess work – very expensive guess work. • John January 8, 2013, 5:09 pm Forteo forms new bone as collagen… If your looking for a BMD increase, you must have proper vit-D levels and take supplemental calcium. 89. Katie Lefebvre December 12, 2012, 2:00 pm My Dr. has suggested that I start Forteo & I’m having a difficult time in deciding. I have had an upper arm fracture and there isn’t any change with the aclasta injections that I’ve had two times. Help ! • John January 8, 2013, 5:20 pm Understand that all osteoporsis drugs other than Forteo, have a warning stating that they can actually inhibit or slow fracture healing…just FYI. 90. Jason Welisch December 9, 2012, 2:28 pm I am looking for testimonials from people who have been prescribed teriparatide forteo for osteoporosis and knee bone degeneration. • connie January 18, 2013, 6:59 pm I was on Forteo 2002-2004 (2 years which is the maximum). My t-score did improve while I was on the injections. Prior to that I hadn’t had improvement with any other drugs. I didn’t have any side effects at the time. However, in 2008 I developed Hypothyroidism. I have no family history of this, and I don’t know if it could be related to the forteo or not…. Now I have a large mass in my thyroid. I just had an ultrasound today so I don’t even have the Doctor report yet. Again, I don’t know if it could be a side effect or not. 91. Barry Dorning December 5, 2012, 5:50 am So true! Just love that humour! 92. Joyce November 28, 2012, 8:36 pm I turned 70 this year. I had been on fosamax for 15+ years. My Gyn said my bones would be ok with this. I feel I should not have taken it so long. I was active (did Zumba) and tripped over my dog August 4 and fractured my hip. Bad break with the ball being fractured. The Dr put 3 screws in since it was in place. He wanted me to do Forteo because it helped bone to heal. I am on my 3rd round of shots and I am quitting. i have had so much pain I find it difficult to walk. I want to get my life back to normal and I feel Forteo bringing me down. Before this I was active and now I hurt all over. By the way my bone density of my hips looked good and showed osetopenia in my back. 93. Harlee Jenkins November 21, 2012, 11:38 am I’m 59 yrs young, hx of osteoporosis,with 3yrs on Fosamax and continued loss of bone density. I was put on Forteo last year and I have had NO…as in ZERO side effects or complications from this “horrible secret agent” med! I’ve not had another Dexa scan yet, because of$$, but I have had 5 major falls in the past 6mos (cause by my loss of sight and “ghosting” vision in my sighted eye)…the last 2 falls in the past week…one off a step ladder down 6 stairs onto a concrete porch. NO FRACTURES TO REPORT!, so the Forteo must be doing somehing positive for me! I ABSOLUTELY WILL CONTINUE TAKING THE FORTEO FOR NOTHER FULL YEAR! I am healthy, happy and walk daily for 10K steps, and watch a toddler and a newborn 4 days/week. I can only share MY outcome, but after lots of research, and MANY prior fractures throughout my active life (10+), I continue as a happy Forteo user! • Carol July 25, 2014, 3:14 am I am 71 with severs osteoporosis. I have been on Forteo for three and a half months. Last week I tripped and fell on my back…..and nothing was broken!! I am very pleased about this. • Marlin October 19, 2014, 10:23 pm I am 55. On Sept 2013 Dr told me I have osteoporosis an a really high risk of fracture. my to score is -3.4 I refused to take medication since I am afraid of the side effects, I have been taking calico AlgaeCal, strontium and walking. I was helping my daughter in her apt and fell down 3 times, also I felt down in my bath and nothing breake. I never have a breake bone in my life. And I do no take medicaments. Now my Dr told me that I need to take forteo for the Hight risk since I. Did no taking other drugs. I am really undicided if I take it or not. The only thing I am doing is walking and taking my calcium, eating better, everything that improve bones is the only thing I ate, I neend to wait till Sept 2015 for my next Dexa. I would let you all know if with exercise and calcium and eating the right stuff is enough, if not I will start forteo. But a least I want to take the risk of getting better without the risk of getting cancer or other health problems due to the medicaments. I am really scare, but at the same time say to my self, my mother have osteoporosis felt down many times and never fracture a bone why it should happen to me? It is not God how will know what happen. No the doctors? 94. Faye November 15, 2012, 8:42 pm Four years ago I began FORTEO injections. After a month my body begain to hurt all over, then came the upset stomach, after 6 months I carried a paper bag all the time because I gagged so bad. AT Seven months I quit. I made about 5 calls to Lilly at this time. All they did was ask me all kinds of questions, each time the same questions. I could not get any answers from them. Before starting forteo my kidneys were fine, 3 months after I stopped I still had upset stomach and passed out 3 times. Had doctor do enascope and blood work. My HGB was 9.6 and other blood work showed Kidney Failure. Since, I have go for injections, every 4 – 6 weeks to keep my blood count up to 11. IS THERE ANY ONE ELSE OUT THERE THAT MAY HAVE GOTTEN KIDNEY DISEASE TOO FROM FORTEO ???? PS my bone density never changed in 7 months. • John January 8, 2013, 5:30 pm The half life of Forteo is less than an hour. Any lasting nausea is usually caused by the anxiety of injecting something into your body. Understand that forteo is biologically identical to the first 34 amino acids of the PTH your body produces naturally. • Carry November 23, 2014, 2:12 pm John what is your experience with Forteo? Do you prescribe it? 95. Dennis October 26, 2012, 8:47 am What are your thought about Magnesium Infusion™ is a ‘Pharmaceutical Grade’ Magnesium Chloride Hexahydrate derived using a critical extraction method from Dead Sea Minerals This is a spray that you spray your skin with to improve your bone health they claim that magnesium is need to move calcium from tissue to your bones. This spray is found at Nature City Products NatureCity • chanapollack January 30, 2013, 2:10 pm This sounds like witch doctor medicine– • Lisa April 25, 2013, 6:22 pm Witch Doctor medicine? How absurd! The magnesium works! Do your research. You think it makes sense to fix a mineral or vitamin deficiency with a drug instead of with vitimins and minerals, which all work together inside your body to give back what it lost, causing the condition in the first place? That’s insane. 96. Nicole Jean October 8, 2012, 12:13 pm What is the best alternative to Forteau? I can’t spend another winter afraid I will slip, fall, and end up with several broken bones. The doc keeps pushing the Forteau. I would like an option, something to compare it to. • Angela May 28, 2013, 2:41 pm My mother who has broken her hip. Now has broken her clavicle and ribs. The doctor wants her to take Forteo. She also has Croans diesease • Wanda Drake January 10, 2013, 1:29 am Every one take my advise don’t ever take Forteo i took it 1 year now it has been 3 years. July 2012 i got 1 fracture in my right foot and my lower back.In September 2012 both feet started hurting at the same time.October the MRI showed 10 fractures in my right foot the fracture in July did not heal my left foot i had 8 fractures in it.I had 6 fractures in my lower spine,memory loss and weight loss.I can’t walk 5 feet without more fractures.I do have osteoporosis after the sever pain i have had i will never take anything for it again. • Pat Skipper November 14, 2012, 9:55 pm I have been on forteo for about 8 weeks now and my pains are getting worse each day. So much that tomorrow at my GP’s office I am going to tell him that I am coming off this terrible drug and not going to see my specialist anymore. I have severe bone loss but at 68 I would rather risk a fracture then continue taking this drug, maybe it would be worth it if I were much younger, but I promise you the pain is so bad and I have enough to deal with pain due to bone spurs in my neck and surgeries in my neck and back…Just saying it is not worth it to me as of tomorrow I hope to stop destroying my body with Forteo…. 97. Harold Kinney September 29, 2012, 8:39 pm Are these adverse events being reported? Your doctor should contact the Lilly Pharmacovigilance Department at 1-800-Lilly-RX (800-545-5979). The website is: http://lilly.com/products/patient-safety/providers-role/Pages/report-adverse-events.aspx 98. Steven Bidelman September 28, 2012, 6:15 pm I have been to the Save Our Bones site before. On behalf of my wife, whom is 59 years old, I need to tell this story. Please be patient. Prologue: She has had about everything imaginable happen to her during the 12+ years we have been happily married. She lost her spleen due due to a complication of surgery in 2003, she suffered loss of vision due to Optical neuropathy in 2001. In 2010 was diagnosed with pancreatic cancer. Thankfully she survived all the horrible chemo, and radiation, and underwent a 7.5 hour surgery, in 2011, where 80% of her pancreas was removed, along with the remnants of the cancer. She is cancer free. But was also diagnosed sometime in 2010, with severe osteoporosis. 1st she was put on Fosamax, which caused her to neck to hurt and indigestion. The Dr. said not to take it because of the reaction. Whatever other alternatives there were, she could not do, due to one or another contradictions with other health problems or conflicting medications. Which brought her to the Forteo choice. We were even given a grant for the$2000 worth of meds still in our fridge.

The truth: Wednesday Sept 26th, 2012 in a instructor led classroom, she, along with others administered their first shots. The nurse/instructor told them that if they were going to have an adverse reaction, they would know in 10 minutes or so. After 15 mins, everyone left, apparently nobody had problems. HOWEVER, after about 5 minutes more when Maggie (my wife) went downstairs to wait for her ride, she was overcome by what she can only describe as the back of her head wanted to explode, this coming in waves , like birth contractions. Followed by the same intense and unbearable pain, in her calves. Luckily, this site is located near both our local hospital, and a walk-in clinic. She got the nurse within 5 minutes and went to the clinic. The doctor she recants, sort of took this in stride and he looked up some info on his iPad, and maintained that it was indeed a side effect. DUH…..

I got the call at work after she went home. The intense pain waves in her head and calves subsided. But she still had a headache. She described it as the pain you have after a migraine (yes she takes meds for those too). That was yesterday. Today she awoke early in the am, headache just as it was yesterday. I took her to our GP and although he is not an expert, and obviously knows the injection was the cause. He wants to know why or how, himself. He believes that the injection caused a metabolic imbalance. Hence the reason he sent her to the lab, for a blood draw, to check on calcium, magnesium, and I can’t remember the third component. All in the hopes of finding what went wrong.
We’ll know the results Monday or Tuesday. Anyone wanting to know know more about this, you will be able to email me directly.

Epilogue: Maggie is 59. Takes several different Rx’s. Oh, by the way, one of the drugs that it said to avoid taking it with, is Advair. Yes she takes that. Whether it’s found out that it was a drug interaction, or that the shot caused an unnatural or unstable metabolic reaction, that trigged the very horrible adverse reaction, she won’t take any more.

I would hate to see almost $2k worth of Forteo be destroyed. Sincerely, Steve (bidelmanst at yahoo dot com) • Jane July 20, 2014, 4:13 pm How was Forteo prescribed when the company states that nobody who has received radiotherapy should get this drug. I ask because I have had radiotherapy and have been refused Forteo. • Randa October 17, 2013, 2:56 am Hello, My name is Randa, I suffer from a very severe osteoporosis. This morning was my very first injection and I had exactly the same wavy pain in my neck, head, lower back. Same as contractions that were leaving me with such a shortness of breathing. My head was exploding. Was rushed in ambulance to hospital. The symptoms occurred after exactly 15 minutes of the injection, the teaching nurse was still at my place. I’m back home now with a terrible migraine but reading and googling about it, found your testimony, flabbergasted because of the similarities in the adverse reaction, decided to drop you a note. Please did you know better of what happened to Maggie, if it was an metabolism imbalance or a medication interaction? Thank you so so much for giving me some feed back. Did she use it again? • Indian user February 8, 2016, 1:37 pm The medicine costs 7000 INR in India. You can buy it from India, but I don’t know about the legal aspect. 99. LazyJ September 27, 2012, 4:20 pm I started Forteo in February 2012. This website has been very helpful in hearing other people’s stories, since February my overall health has really deteriorated. I have an extreme lack of energy,my wrist and hands ache, and I have a lot of flim build up in my esophagus. I have lost about 15 pounds and have little appetite. I have gone from a healthy man to extreme feeling of being unwell. I’ve also suffered from shortness of breath which I haven’t seen other people complain of , but I had my heart checked completely and it’s very healthy! it’s been so helpful to know that others have these side effects. I’ve been relating them to other possible causes. I called my doctor and he was very defensive but did say to stop the Forteo. I’m going to stop it today and will let you know if my good health returns. Sincerely, Lazyj • linda sickora April 17, 2013, 1:42 pm please let me know what happens. i have myasthenia gravis and asthma and i am to start forteo in 2 days. i am scared to death of it. • DebV October 20, 2012, 6:23 pm I have been on Forteo for one month and have shortness of breath, loss of appetite and extreme fatigue. I haven’t had any factures in the past month which is a big improvement because I had 7 spontaneous fractures in 4 months after being treated with steroids for Crohn’s Disease. I see my doc on Monday and will probably stay on the Forteo as long as the symptoms don’t get worse. I’m going to try pilates for osteo now that I am stabilized. 100. Megan Osborne September 21, 2012, 11:16 am My GYN has prescribed since my bone density test revealed -3.5 on my hips. I am 53. Thought I was healthy. Never broke a bone, have one crowned tooth in the back. No pain (not even Advil in my med cabinet) I do need to eat better, and exercise more. I am little 5’5 115 lbs. which comes naturally. After reserching the internet on this drug I say NO WAY! I wiil clean up my diet, excercise and take more vitamins and supplements. I am not a guinea pig! • linda sickora April 17, 2013, 1:44 pm good for you. i think i will also clean up my diet and take my chances. i drink ovaltine several times daily in soy milk. forteo scares me and i do not need any more problems added to the ones i already have. thank you for your input. • Kim March 11, 2013, 10:18 pm I am the same. I am 54 and was diagonised wit severe osteoporsis in my spine with a t score of -2.8. I have esophogus problems and therefore can not take any Fosomax etc by mouth. My doctor said Foreto is my only option. I am totally surprised by this diagonsis – I have never broken a bone. I am really afraid to take Forteo because of the side effects but wonder if I should because I of my age. I am terrified of needles (still cry when I get a shot) and then recently read that people can lose their hair – not to sound vain, but I have beautiful hair. I don’t like to do any research on what to do, because I feel lik my options are limited and I start to get discouraged when I read anything about osteoporosis. My husband is self employed and I pay for my own insurance – I am terrified of fracturing a bone and losing everything I have to be in a state run nursing home! Any suggestions would be great! • Jane July 20, 2014, 4:18 pm That t-score is surely not even mild osteoporosis. • linda sickora April 17, 2013, 1:48 pm i drink ovaltine every day several times a day in soy milk. i too have significant bone loss, but i think i am better off taking my chances with an altered diet, and using natyral, possible remedies, and skip the osteocsarcoma. i have 5 fractures in my spine, have never broken a bone so i think forteo is a bit extreme for me. i am 63 years old. • Beth March 21, 2013, 1:52 pm I am 55 and have been taking Forteo for almost one year. I too had osteo in my spine (-3.5) I have seen a marked improvement in my spine which is now at -2.6. I have had no ill effects from the drug and have been religious about giving myself the shot every day, along with Ca and Vit D. I will continue to take Forteo for another year and then switch to Reclast (most liekly) to preserve what I have gained back. The needle feels like barely a pinch. I have gotten used to it. Yes, it’s a pain in the rear, but it’s worth it to see such a dramatic change. Best of luck to you! • Bev. February 3, 2013, 4:37 pm Me too – same age. Gyno gave me the option for Forteo – read the reviews and I think I’m going to pass. 5’3, 116 pounds (petite). I walk daily but I’ve now increased my walks, started taking calcium and vitamin d (never did – I’m a very healthy eater – just can’t drink milk – makes me sick). I think I’ll choose Boniva and then get another bone density test next year. I HATE the fact that I would be taking a medicate that if I’ve ever lost my job (husband is self employed so we depend on my health insurance) then what? I can’t pay 600.00 a month for a medication that may or may not work. Glad to see that others have the same doubts as I do. • linda sickora April 17, 2013, 1:51 pm my ins. co. was billed$1100.00 for my first dose of injections. how can they justify that? and it may or may not work. i think i will opt not to use the forteo. too many adverse side affects. i already have myasthenia gravis and asthma. don’t need any more problems.

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