Spongebones
04-29-2008, 05:45 PM
I have been on Forteo for almost two years now and my dr wants me to start IV bisphos. I have read some VERY NEGATIVE information about side effects and so forth and am worried about beginning this treatment. I had a good deal of bone pain after starting Forteo which lasted several months and continues to be troublesome at time even after almost two years of treatment. I have read that IV bisphos can cause extreme bone pain as well as other side effects, one of them being irregular heart beat which I already experience. I have also developed Ulcerative Colitis which is not responding well to treatment. Sooo, as you see I'm really confused at this point. Will be seeing my Dr. next week and will be finished with 2 yrs Forteo by end of June. I have gastro problems and cannot take oral bisphos. Does anyone have any suggestions for me? Please help
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taape
04-29-2008, 09:16 PM
This was the same recommendation given to me when I finished 2 years on Forteo. I declined IV bisphosphonates because I'm worried about needing major dental treatment and because of possible side effects. I can take the oral version either.
My recommendation if at all possible is try and continue on the Forteo if your doctor is willing. My doctor wasn't and within 6 months I lost all the gains I made on Forteo and have just been using exercise, calcium, and Vit D. I'm seeing a new doctor this month to see if he will prescribe Forteo again. Still it hasn't been marketed as a continuing treatment.
My recommendation if at all possible is try and continue on the Forteo if your doctor is willing. My doctor wasn't and within 6 months I lost all the gains I made on Forteo and have just been using exercise, calcium, and Vit D. I'm seeing a new doctor this month to see if he will prescribe Forteo again. Still it hasn't been marketed as a continuing treatment.
Spongebones
05-05-2008, 05:24 PM
Thanks Taape for your reply. Sure hate to hear that you have lost all your gains made while on Forteo. Two years of shots in the stomach seems like a huge waste of time, not to mention the money. I have been reading a lot about the IV bisphos and like you am afraid of the side effects, but I sure don't want to lose the hard earned gain. I know that the IV bisphos have only been available for about 2 years and I believe that there are only 2 currently available. I have talked with a rep from the pharm co that makes Boniva and she was very nice, but I didn't lean anything that I didn't already know. I am suprised that I have only gotten 1 reply to my original post. Surely someone out there has went from Forteo to an IV bispho! I really need to hear some encouraging comments, so PLEASE, if anyone has made this transition with positive effects, let me know. Thanks
DesertBloom
05-05-2008, 08:43 PM
Hi Spongebones: Sorry I can't give you an info on the iv BP's, I know there were some that finished Forteo and went on oral BP's but they haven't posted in a long time. There was one iv BP user that didn't take Forteo but I haven't seen any new posts from her either.
I'm finishing Forteo at the end of June as well, but I'm going to take Evista. I did real well on Forteo, without any side effects, but while I was on Actonel it did cause some tolerable bone pain. My Dr said that since I had that problem the iv form would cause even more intense pain since that was the only side effect I had from Actonel, plus the iv form would have greatly increased side effects due to the strength of the med.
I hope there is someone out there who is in your situation, but I haven't seen anyone post about it in months. Sometimes the NOF has new articles on the latest news in iv BP's (bisphosphonates) you might check there.
Good Luck with your decision, and would Evista be a possibility for you? I know that Evista isn't considered a first line of defense for osteo, but I've improved greatly (1 whole point) and hope that it will maintain my current scores. I'm also hoping that there will be other options available down the road so I can switch to something else if need be.:angel:
P.S. I agree with Taape, if you can find a Dr that will let you stay on the Forteo (provided you want to) do that. I've been trying to find some info on continuing on Forteo longer than 24 mos, but apparently the info hasn't been released to the public.
I'm finishing Forteo at the end of June as well, but I'm going to take Evista. I did real well on Forteo, without any side effects, but while I was on Actonel it did cause some tolerable bone pain. My Dr said that since I had that problem the iv form would cause even more intense pain since that was the only side effect I had from Actonel, plus the iv form would have greatly increased side effects due to the strength of the med.
I hope there is someone out there who is in your situation, but I haven't seen anyone post about it in months. Sometimes the NOF has new articles on the latest news in iv BP's (bisphosphonates) you might check there.
Good Luck with your decision, and would Evista be a possibility for you? I know that Evista isn't considered a first line of defense for osteo, but I've improved greatly (1 whole point) and hope that it will maintain my current scores. I'm also hoping that there will be other options available down the road so I can switch to something else if need be.:angel:
P.S. I agree with Taape, if you can find a Dr that will let you stay on the Forteo (provided you want to) do that. I've been trying to find some info on continuing on Forteo longer than 24 mos, but apparently the info hasn't been released to the public.
taape
05-05-2008, 09:35 PM
I guess not that may patients are using IV bisphosphonates that's why not much response. In 2 weeks I have my DEXA and then the next week I have the app't with the new doctor. I'm afraid what the DEXA will show but I'll sure let everyone know.