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Osteoporosis - Forsteo

Posted , 7 users are following.

Mzdv123
Mzdv123

hi everyone, after three fractures, including one at T12, I've just been prescribed Forsteo.  I'm 54 with a score of 4.6 spine, 3.6 femur.  I've studied reports about Forsteo and would like to hear about reactions & results from real patients please.  Am I about to embark on a real course of successful treatment...? And, how bad are the reported side effects please?

thanks in advance

0 likes, 29 replies

29 Replies

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  • carol32225
    carol32225 Mzdv123

    Posted

    Hello Mzdv123

    I was prescribed Forsteo for six months as part of a research project at Guys Hospital. I have osteoporosis but no history of fractures so wouldn't have been offered this treatment otherwise. I know that some people suffer side effects fro this drug, but I didn't. My bone density improved significantly from spinal T'score -2.8 to -1.8 over the course of a year. You must make sure to take some sort of anti resorpative medication afterwards to maintain your gains. Hope this helps.

    Good luck

    Carol

  • Mzdv123
    Mzdv123

    Posted

    Thanks for that. What I've read about density improvements is encouraging. The side effects and 'what happens after', are still mystifying, lol
  • Juno-Irl-Dub
    Juno-Irl-Dub Mzdv123

    Posted

    Hi Mzdv, My t-score (spine) was very similiar to yours (-4.5) and the other areas were in the osteopenia range. This was found after my GP suggested a DXA scan because I had starting a course of steroids for an arthritis condition. I had no symptoms, no fractures, and was completely stunned by this result. I thought I was going to crumble into myself (!) and, from being really active, I became fearful of doing anything. The rheumatologist straight away put me on Forsteo - and this took a bit of getting used to also. I had read up on side-effects and was very concerned about these also. So I agreed to try it for one year and the doc went along with this. I found it fine to take and using the injector pen was no trouble. I had two side-effects, I think  - tiredness, and weight loss. The former could also have been due to my arthritis condition anyway, but weight loss could not. As I'm skinny anyway, I hated people commenting about it.  . . If you're on the chubby side you'll be quite pleased however! At the end of the year, I started on Actonel, no problems with that either, and after 9months ( so total treatment 1year 9 mths.) I had a DXA scan last month. My t-score has gone from -4.5 to -4. I was disappointed with that but, when I did the Maths, it was actually an 11% improvement. Anyway when the Rheumy got this result she advised one further year of Forsteo and I've agreed. I have an apt. with her in 2 weeks to sort this out. By the way I'm 63. 

    Ask any other questions you want . .. .  Kind regards, J

    • jelenasrbija
      jelenasrbija Juno-Irl-Dub

      Posted

      Hello!

      Please help me. Tell me how are u feeling now? My mother need to tart using forteo for 2 years and Im very afraid. Thank you.

    • Juno-Irl-Dub
      Juno-Irl-Dub jelenasrbija

      Posted

      Jelenasrbija,  I am feeling very well after my 2 years on Forteo and have shown quite an improvement in my bones. I'm not taking Actonel as a follow-up for a few years. 

      What are you afraid of?  Do talk to your doctor about every single worry you have about your mother taking this medication.  I'm quite sure he will reassure you, but  make sure you get answers to your questions, not just general reassurance . . ..     Good luck,   J

    • jelenasrbija
      jelenasrbija Juno-Irl-Dub

      Posted

      Thank you for a quick answer. Today my mother will start her first dose. Im worried about side effects. Troubble is that we live in Serbia and Forteo is not yet commonly used medication. Only in capital Belgrade doctors heard about it and Im afraid if she gets sick who will know how to help her. Belgrade is 80 km away. She is skinny also and in good physical condition so I hope everything will turn out OK. She is 61 years old. I wish you a good health too!
    • Juno-Irl-Dub
      Juno-Irl-Dub

      Posted

      Important correction - 

      I intended to say    - " I'm NOW taking  Actonel as a follow-up for a few years." (instead of " I'm not taking Actonel . . .).

      Sorry to anyone who was confused . . . 

      J

  • Mzdv123
    Mzdv123

    Posted

    Hi, and thanks for that, my doc said straight away that I'm to be on it for two years. Glad to hear that you didn't suffer side effects - but if weight loss is one of them, I'm all for that! I've been putting on a lot of weight recently due to my pain/immobility and waited a long time for a kyphoplasty, which I had three weeks ago so mobility is better every day.

    glad to hear of these positive bd's on Forsteo - it's very encouraging, thank you 

    • Juno-Irl-Dub
      Juno-Irl-Dub Mzdv123

      Posted

      Hi, Forsteo is supposed to really help with pain as well as actively grow new bone. It has been used since 2002. The only hassle I've had is to make sure it's not left out of the 'fridge as it's unusable if you do. I made 2 mistakes in the year of using it and had to get a replacement pen. On one of these times I was on holidays and there was major drama (mostly mine) trying to sort it out. . . They give you a cool bag so you can take it with you when away from home.  . . .  

      Feel free to ask if any other questions crop up. By the way, significant OP (as we both have)  can even be diagnosed in very young people, men and women.  My conclusion is - it's better to have something wrong with you that you can do something about, than something wrong that you can't do anything about . . .   Keep in touch, J

       

  • allison72169
    allison72169 Mzdv123

    Posted

    Hi Mzd. Here in the U.S., Forsteo is known as Forteo. I've not taken Forteo (or any other osteoporosis drug) to this date, though several doctors have urged me to, as based on my wide-ranging internet research I consider all of them unacceptably unsafe.

    In the case of Forteo, I don't think the concern is so much with side effects such as headache, nausea, etc., that might be relatively short-term but rather with the drug manufacturer's own findings that Forteo was found to cause osteosarcoma, a rare but lethal cancer, in lab rats. Though there are not yet solid data extrapolating this finding to humans, it seems worrisome, especially in light of what Public Citizen, a reputable organization (the prominent consumer advocate Ralph Nader founded it), reported as the drug's ability to cause this cancer even at low doses. Public Citizen also mentioned that Forteo hasn't been found to prevent fracture in men, only in women. (All of these statements could be checked against other sources for accuracy.)

    Not being a medical practitioner, I can't recommend for or against you or anyone else taking a specific drug; I can only state what I've found in my own research and what I believe to be true.

     

    • Juno-Irl-Dub
      Juno-Irl-Dub allison72169

      Posted

      Hi Allison,  Can I draw your attention to the following articles ?

      1)  Andrews EB, Gilsenan AW 

       " The US postmarketing surveillance study of adult osteosarcoma and teriparatide."  ( Americian Society for Bone and Mineral Research".

      2) Osteo Naturals Dec.2012

      " Forteo Safety: what are the risks for osteosarcoma"?

       (Google exactly the above).

      Kind regards,  J

       

    • allison72169
      allison72169 Juno-Irl-Dub

      Posted

      Thanks, Juno. I'm alway interested in new articles and have located both. Will take a look. If I have anything intelligible to add after reading, I'll post again.

      Best,

      Allison

       

    • allison72169
      allison72169 Juno-Irl-Dub

      Posted

      Juno, the first article features a study that was sponsored by the pharmaceutical company Eli Lilly, so I question how much credence can be given to its findings.

      Best,

      Allison

       

    • Juno-Irl-Dub
      Juno-Irl-Dub allison72169

      Posted

      Hi Allison, I was indeed aware that the makers of Forteo funded this  extensive 15-year survey of any possible association between their medication and osteosarcoma. This is hardly surprising given that it was a condition of their FDA approval of the drug that they do so.  ( For the benefit of others, this survey is now 7 years into it's overview and has found no evidence that patients taking Forteo had any increased risk of osteosarcoma ).

      For my part, over the past decades I have on a number of occasions been a researcher along with medical colleagues into the efficacy of various drugs - the data collection, statistical analyses, and the writing of papers for presentation and/or submission to journals. This research would, of course, be funded by the drug company concerned and would also have to be approved by the hospital's Ethical Committee. Not easy. Never was any of our findings compromised by the fact that the relevant drug company sponsored our work - the findings were what they were. And they stood.

      In this case, Lilly funded this huge study by employing a non-profit research institute. This institute, along with a Lilly employee, had responsibiliy for the design of the study. None of the authors who were part of the study's data aquisition and analysis and who had to accept full responsibility for it's integrity were connected to the drug's manufacturer.

      As you may be aware under US law there is a Duty of Loyalty that requires a non profit organization to identify and resolve conflicts of interest and the Americian Society for Bone and Mineral Research (ASBMR) assers that it follows all such guidelines. The main author/investigator of this ongoing study ( EB Andrews) appears to havve researched widely in the Clinical Pharmacology area.

      Finally, it is very easy to write off a drug study by suggesting or implying that, because the drug's manufacturer has sponsored the research, the results are somehow questionable. However, it compromises the integrity of many many honest researchers which I, for one, cannot accept.

      Kind Regards,  J.

      PS the second paper in the precious post gives a possible explanation for the findings of the first.

       

    • allison72169
      allison72169 Juno-Irl-Dub

      Posted

      Juno, you make an excellent case for not dismissing the findings of a study solely because it was sponsored by a pharm company. I think I was being somewhat lazy earlier in giving that reason only for possible skepticism, as alas my reservations about Forteo (a.k.a. Forsteo) are numerous. Which is unfortunate, as Forteo othewise might be a drug I'd consider taking because it avoids some of the catastrophic risks of the bisphosphonates. However, my reading about Forteo has yielded grave misgivings as to its safety and efficacy, which I will elaborate on in a future post, as I just returned from grocery shopping in 93-degree heat here in Boston and need to chill out for awhile.

      Best,

      Allison

    • Juno-Irl-Dub
      Juno-Irl-Dub allison72169

      Posted

      Hi, I would be very interested in hearing abou your misgivings. I have an apt. to discuss all this with my Rheumy on Aug. 26th. and would be prepared to put them to her - and hear her response. ( She completed her post grad rheumatology studies in the US, in Harvard.)  But I don't feel she's invincible!   Cheers, J.
    • allison72169
      allison72169 Juno-Irl-Dub

      Posted

      Far less has been published about Forteo than the bisphosphonates since it's newer and not at all as widely used. The main concern is that it caused a rare but lethal cancer in lab rats even at low doses. (Though I think their cumulative doses were quite high.) That is why it's not approved for use beyond two years. Since it doesn't have the staggeringly long half-life as the bisphosphonates, its benefits recede and often disappear after it's discontinued. Which places the patient back at square one: either needing to take something else, likely a bisphosphonate, to continue to reap benefits or to resume the Forteo after a drug holiday, thereby heightening the risk of the cancer it's been noted to cause.

      In addition, I gather that Forteo hasn't shown benefit in reducing the rate of hip fracture, only vertebral fracture ... though if I remember correctly (?), the latter is your area of concern. There seems to be disagreement as to whether the small compression fractures of the spine, identifiable only on x-rays, warrant preventive treatment with such risky drugs. However, I know some people have pain and debilitation from vertebral fractures, so I wouldn't venture to try and make any statement as to when vertebral osteoporosis does/doesn't *need* to be treated.

       

    • Juno-Irl-Dub
      Juno-Irl-Dub allison72169

      Posted

      Hi Allison, the osteosarcoma dose for rats in the early trials was a dose of two to sixty times the dose recommended for humans.  And It was administered for the duration of the whole of their lives. Also, as you know, the rat skeleton is radically different from the adult one in the way it works.

      However, you're quite right in saying that any significant bone improvement  achieved will slowly reduce if all treatment is discontinued after Forteo. So the dreaded bisphosphonates are advised after 2 years to maintain and hopeffully build upon the Forteo gains. One point here - you cannot resume taking Forteo as two years is deemed the lifetime duration of treatment. Re. whether small compression fractures need treatment at all  - my understanding is that any spinal fracture (without treatment) compromises the the whole structure ( think Twin Towers with one floor's metal struts collapsing thereby putting huge stress on the struts of the floor below . . . ). Lord, how depressing! You must think I'm a total drug enthusiast, but really it's quite the opposite. Up until two years ago, I hardly ever took medication. And I'm in a quandry about where to go now. My doc. wants to go for one further year of Forteo and then continue with (?) Actonel for 4 years. I've contacted our OP Assoc. here outlining the relevant medical details and the consultant there said his first choice would be Forteo et al. I got my doctor- relatives to consult their colleagues - and the advice was exactly the same. Google' severe OP treatments' and the recommendations are Prolia or Forteo. . . .  So, apt. on the 26th. and decisions will be made.. . . 

      Of course, we could both 'hold off' and wait for a new treatment with fewer side-effects - but what is one fractures again while waiting.? However, unpleasant the current treatments are, they DO significantly reduce the risk of new fractures. My old GP,who was my doc. for most of my adult life and retired 5 years ago, is now bent over with a hump like a very old woman. She must have known her condition and didn't treat it.  . . . 

      So anyway, will keep in touch and let you know the latest chapter in the saga.   You mind yourself,  J

    • allison72169
      allison72169 Juno-Irl-Dub

      Posted

      Hi Juno. I consider the current osteo-drug offerings to be more than simply unpleasant. The magnitude of the potential side-effects, ranging from irreversible ONJ to femoral fracture to severe atrial fibrillation to esophageal damage to cellulitis (and more), is more along lines of what would be associated with chemotherapy for cancer, which is used in situations posing the threat of death. Osteoporosis is a troubling condition, to be sure. And I realize that very old, frail people do occasionally die due to complications of hip fractre. But does osteoporosis warrant risking the above-listed consequences? To my mind, the answer is no.

      Prolia, by the way, has a terrible side-effect profile. I will post about it later.

      I’m not so sure that microscopic compression fractures are the equivalent of an entire structure being compromised; see, e.g., what Jarvinen et al. wrote about this type of fracture. Even if, worst-case scenario, such fractures were eventually to lead to some stooping, I’d rather be stooped over than have untreatable ONJ, since gum disease and nonhealing mouth lesions can become systemic, which IS the equivalent of an entire structure being compromised.

       Best regards,

      Allison

      I don’t at all consider you a “drug enthusiast.” You’ve been put in the same terrible quandary as I and thousands of others have, by doctors who are sounding the alarm about what could well be looked on as a regrettable but essentially not yet treatable (at least so far) accompaniment of aging.

    • Juno-Irl-Dub
      Juno-Irl-Dub allison72169

      Posted

      Hi, Yeah, some of the side-effects are way more than just unpleasant. As I typed that I thought ' she won't let me away with that !'  . . . We're right back to where we were before - take medication/ don't take medication. Risks both ways - more risks one way/ more risks the other way?

      Yes, what we suffer from is perhaps only a function of ageing and maybe we should do it more gracefully - and with less angst (!). Our great grandmothers never had OP - they were long gone beforehand.  HOWEVER, rightly or wrongly, I see myself as quite young at 63 (I can't recall your age, though you did mention it) and I was hoping to survive for another 20 years - with lovely bones, and no ONJ !!  There's vanity for you!!  Wishing you the best of luck anyway. And keep cool in that summer heat.  J

    • allison72169
      allison72169 Juno-Irl-Dub

      Posted

      Too bad we live in different countries (at least I think we do) as otherwise we might be able to discuss all of this over a drink or two, or at least coffee/tea, and have a few laughs about it (if that's possible). I appreciate your input, as like me you've put a lot of thought and research into this topic. I turned 65 almost two months ago to the day, so essentially we're the same age.

      I didn't mean to imply that everyone gets osteoporosis as they age, as evidently this isn't the case -- similar in that way to osteoarthritis, which a lot of people, including me, contract, but by no means all.

      Though most people who take bisphosphonates aren't going to get ONJ, I personally fear it, as I've already had a lot of dental issues (and "lots of dental issues" is a subset of patients who are considered at higher risk for ONJ).

      Finally (for now) as I've stated now so many times on this site that I know I must sound like a broken record, it's the likely irreversibility of the side-effects that is so concerning, not simply that they may or may not occur.

      A

    • Juno-Irl-Dub
      Juno-Irl-Dub allison72169

      Posted

      Your last paragraph -  fair enough, understood.

      Second last paragraph - Yes, that is a concern. ( Forteo for you then . . ! ). 

      First paragraph - If you're ever the other side of the Atlantic, I live in Dublin, Ireland and I could definately stand you to a coffee, or three . . .  J

    • allison72169
      allison72169 Juno-Irl-Dub

      Posted

      I should have guessed that Irl-Dub stood for Ireland, Dublin. I should change my own handle to allison-US-Bos, especially as there's another allison/alison on the site. But not sure how or even if that can be done.
    • Juno-Irl-Dub
      Juno-Irl-Dub allison72169

      Posted

      Go to ' My Account ' at the top of the page. Then 'My Details ' , then  -

      ' Update my Details'  . . .   J

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