User Tag List

Likes Likes:  0
Page 2 of 2 FirstFirst 12
Results 11 to 16 of 16

Thread: Forteo & Pred induced Osteoporosis

  1. #11
    Join Date
    Feb 2013
    Location
    Near Rochester, NY
    Posts
    699
    Post Thanks / Like
    Mentioned
    5 Post(s)
    Tagged
    0 Thread(s)

    Default

    Quote Originally Posted by Alysia View Post
    In Israel no dr ever suggested me any of those meds. Never heard of them. Eventhough I am on pred since 2008 and already have osteopenia. What all docs here suggest is calcium 600mg plus vitamin D. Even an endocrinologist dr that I saw few months ago, only said to double the calcium. Nothing else.
    I will most likely refuse any of these meds. There are only two categories. The Fosamx type meds have side effects of severe breaks of the femur, pelvis etc. as well as causing bone death in the jaw for people with weak teeth. The other type is Forteo which has a side effect of bone cancer. I think I am better off increasing my gym time and continuing with my calcium and d3 and the new suplement Strontium prescribed by my amazing PCP. I go to the dentist next week to see if he thinks I would be OK with Fosomax. If he says yes, I will NOT take it because my PCP is dead sense against it. She is OK with Forteo, but insurance will not approve it unless the dentist says Fosomax is too dangerous. Forteo costs thousands (yes thousands) of dollars every MONTH. No way can I afford that!!!
    Jacquie (aka Lifelong Booknut)

    Updated status: "Honorary Weggie"

  2. #12
    Join Date
    Jul 2012
    Posts
    44
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    My husband is in month 21 of Forteo and will quit at 24 months. It was the treatment of choice when he developed spinal compression fractures. He ceased Fosomax when he developed sores in his mouth that were quite painful. He has had WG for going into the 6th year now. When he needed higher does of prednisone temporarily to combat some lung function issues he was unable to tolerate the pain in his spine from the steroids.

    Forteo was chosen because it does not affect the kidneys and he has had borderline kidney involvement (most likely) for the entire 5 years - we go out of our way to avoid any drug that can affect kidney function.

    He has suffered no side effects, the shots are easy (but expensive). He also has had no new compression fractures - coincidence or result? who knows?

    It is an expensive treatment. The specialty pharmacy that partners with our insurance charges almost $2,900 for a 28 day supply. This is after the negotiated discount. In our eyes well worth it if it stops the pain from fractures.

  3. #13
    Join Date
    Feb 2013
    Location
    Near Rochester, NY
    Posts
    699
    Post Thanks / Like
    Mentioned
    5 Post(s)
    Tagged
    0 Thread(s)

    Default

    A lot for me to think about. i will have to see how much it would cost us after insurance pays their share. if only Medicare covers it I am up the creek since it only covers 80%. That leaves us with almost $600 a month out of pocket. thank you for the input.
    Jacquie (aka Lifelong Booknut)

    Updated status: "Honorary Weggie"

  4. #14
    Join Date
    Apr 2011
    Location
    Olympia, Washington
    Posts
    6,992
    Post Thanks / Like
    Mentioned
    24 Post(s)
    Tagged
    0 Thread(s)

    Default

    I was taking 2000mg of Calcium and 2000 of Vitamin D3. My PCP suggested I lower the Calcium to 1000mg but keep the D3 at 2000mg. I think he was concerned about kidney stones or bone spurs or some such. Then I talked to my PA at the orthopedic practice, and she said 1000mg of Calcium was good but that she herself takes 3000mg of D3, that you can't really take too much, so I've started taking that much. Neither of these docs has pushed me on Fosamax or Forteo or any of those, but the PA said I should talk to the PCP about it again. I was on Fosamax for about 5 years starting in about 2008, but was told by my WG pulmy that 5 years was about the max, so I stopped. He mentioned the injectibles as a possibility for the future. My oral surgeon said I could go back on Fosamax after a break of a few years. But he wasn't implying I should. Why would he say that if it can weaken jaws? He knew about WG and pred. So it seems everyone has a sort of tentative opinion but isn't definite that it's a good idea. Seems pretty flakey to me.

    Sent from my MotoE2(4G-LTE) using Tapatalk
    Anne, dx'ed April 2011

  5. #15
    Join Date
    Jul 2012
    Posts
    44
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    You might also do an online search for Forteo coupons - there are several available from the drug manufacturer to help pay the co pays.

  6. #16
    Join Date
    Feb 2013
    Location
    Near Rochester, NY
    Posts
    699
    Post Thanks / Like
    Mentioned
    5 Post(s)
    Tagged
    0 Thread(s)

    Default

    My doctors seem pretty firm that five years is the lifetime max for the Fosamax class of drugs. They are also the only ones that have negative side effects on jaws ... but if you have strong teeth they are probably OK. Given my teeth which have been weak all my life, I think I wojld be at too great a risk. It is all a gamble. Risks vs benefits as all the docs say!
    Jacquie (aka Lifelong Booknut)

    Updated status: "Honorary Weggie"

Page 2 of 2 FirstFirst 12

Bookmarks

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •