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Has anyone heard of (been advised to use/used) "FORTEO"?

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  • Has anyone heard of (been advised to use/used) "FORTEO"?

    I have. One surgeon wants me to start taking it. He's the only one who has already gotten my recent "quantitative CT scan" - a new methodology to evaluate bone density, when dexascans are inadequate (my lumbar arthritis makes the vertebral dexa-scan unreadable.

    FORTEO is a new medication to improve bone density. Unlike previous ones it increases osteoblasts (grow bone) instead of relying on decreasing osteoclasts (destroy bone - part of a natural process).

    It's not only humongously expensive, it has been shown to greatly increase risk of sarcoma - bone cancer. OK, true, it was only in rats, but that's because the causal relationship is so pronounced, they can't legitimize trials on humans.

    However, I'm sure they'll be studying the first group of guinea pigs - like me, if I consent. Self-administered in injection - which means my insurance definitely WON'T pick it up (besides which, I'm within a year of MEDICARE. MEDICARE may not pick it up at all).

    But I'm not keen on using it, regardless of price.

    For now, it's only FDA approved for two years max and thereafter one must continue with the other kind of bone density enhancer (e.g., FOSAMAX) for the rest of ones life. Otherwise, the new found density is lost. Thing is, per current research, even FOSAMAX isn't recommended for indefinite use - far from, in fact! The findings on FOSAMAX use before and/or after deformity correction surgery are very mixed.

    I HATE weighing all these medical specs on my own. Luckily, I have an internist family friend I CAN ask - almost forgot...Hope he will read up a bit for me (IF the info is available). I find it maddening that they don't make all medication specs available - not even to MDs. Believe it or not, a bill has been languishing in Congress for years, which would make all clinical info on medications available to docs on a special (restricted) web site. Big Pharma has shot even that down, time and again!

    Anyhow, I wondered what others had done and heard of. I must not be the only one with osteopenia.
    Last edited by Back-out; 04-26-2010, 04:03 PM. Reason: forgot something
    Not all diagnosed (still having tests and consults) but so far:
    Ehler-Danlos (hyper-mobility) syndrome, 69 - somehow,
    main curve L Cobb 60, compensating T curve ~ 30
    Flat back, marked lumbar kyphosis (grade?) Spondilolisthesis - everyone gives this a different grade too. Cervical stenosis op'd 3-07, minimally invasive

  • #2
    Tangent....This reminds me that, even NSAIDS are apparently contraindicated before and after deformity correction surgery as they impede bone regrowth. Means more narcotics are needed for pain relief, especially for those who like me, get significant relief from NSAIDS* (Before, because they are anticoagulants).

    * I find myself wishing there were a forum to compare notes on medications and symptoms associated with scoliosis and surgery. Some of my questions don't really fit anywhere! I see one of the beauties of this site, as the opportunity for "SPINIES" to compare notes on everything - especially, the many, many decisions we are confronted with. Like whether to take FORTEO.

    Or perhaps I should have used the non-surgical treatments board (?)
    Not all diagnosed (still having tests and consults) but so far:
    Ehler-Danlos (hyper-mobility) syndrome, 69 - somehow,
    main curve L Cobb 60, compensating T curve ~ 30
    Flat back, marked lumbar kyphosis (grade?) Spondilolisthesis - everyone gives this a different grade too. Cervical stenosis op'd 3-07, minimally invasive

    Comment


    • #3
      I know a woman who had surgery at age 61 and at 11 months one of her rods broke. Her surgeon recommended FORTEO. She had to self-inject and I believe she said her out-of-pocket expense for this drug was $200/month. No one should take a bisphosphonate for the rest of their life. I believe current recommendations are no longer than five years.

      Comment


      • #4
        WARNING: POTENTIAL RISK OF OSTEOSARCOMA
        In male and female rats, teriparatide caused an increase in the incidence of osteosarcoma (a malignant bone tumor) that was dependent on dose and treatment duration. The effect was observed at systemic exposures to teriparatide ranging from 3 to 60 times the exposure in humans given a 20-mcg dose. Because of the uncertain relevance of the rat osteosarcoma finding to humans, prescribe ForteoŽ only for patients for whom the potential benefits are considered to outweigh the potential risk. Forteo should not be prescribed for patients who are at increased baseline risk for osteosarcoma (including those with Paget's disease of bone or unexplained elevations of alkaline phosphatase, pediatric and young adult patients with open epiphyses, or prior external beam or implant radiation therapy involving the skeleton) [see Warnings and Precautions (5.1), Adverse Reactions (6.2), and Nonclinical Toxicology (13.1)



        Read more: http://www.drugs.com/pro/forteo.html#ixzz0mFJk8Bjv
        Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
        ---------------------------------------------------------------------------------------------------------------------------------------------------
        Surgery 2/10/93 A/P fusion T4-L3
        Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

        Comment


        • #5
          Thank you Chris and Linda!

          Linda, right-o that 's what I read and also I looked up more. Scary. Let's see what the other surgeons say when they see the results of my QCT. If he's the only one, I'm deleting him from my list of candidates.

          Chris, I have heard that about bisphosphonates too and that's another reason I am wary of FORTEO. The directions for it definitely said if one takes it,
          a) it had to be continued two years and
          b) it had to be followed by a bisphosphonate forever.

          It seems like a cure worse than disease judgment, but again let's see if others say the same thing.

          If I find out he's involved in a clinical trial and or has invested heavily in the new compound that will really tie it. (I don't know if anyone but me read in the NYTImes that several top NYC scoli surgeons were accused of conflict of interest for promoting some medical hardware or medication they had a) approved in clinical trials. b) invested in heavily.

          A very serious no-no).
          Last edited by Back-out; 04-28-2010, 12:32 AM.
          Not all diagnosed (still having tests and consults) but so far:
          Ehler-Danlos (hyper-mobility) syndrome, 69 - somehow,
          main curve L Cobb 60, compensating T curve ~ 30
          Flat back, marked lumbar kyphosis (grade?) Spondilolisthesis - everyone gives this a different grade too. Cervical stenosis op'd 3-07, minimally invasive

          Comment

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