Lasting affects of Forteo - Osteoporosis Message Board

Nan-NMW · 02-11-2005, 03:04 PM

I am reading "What Your Doctor May Not Tell You About Ostyeoporosis" by Felicia Cosman, M.D., which was recommended by someone on this board. In the book she makes a very good point about the fact that once you stop taking Forteo, you need to start taking Fosomax or some other bone building drug or you will lose the bone mass you have gained from the Forteo. Many of those who have posted threads here say they cannot tolerate Fosomax or Actonel. I am doing all of this research before agreeing to start Forteo, as prescribed by my doctor. However, what happens if after taking the Forteo for 1-2 years, and spending the small fortune that this drug costs, and hoping against hope to not develop bone cancer, you find that you cannot tolerate the Fosomax, etc. Seems like, at that point, you would just start losing the mass you have gained. I just had the DEXA scan two weeks ago and have not previously taken any osteoporosis meds. I am thinking that it might be wise to try the drugs usually prescribed for less severe cases than mine first to be certain that I can take them forever after the Forteo. Of course, two years down the road they may have better solutions. I am going to doctor next week for the 24 hour urine and parathroid tests before making any decisions. Just thought some of you might have some input here. Thanks

cwing · 02-11-2005, 06:03 PM

I wish you the best of luck. It sounds like a good idea to test yourself on a small dosage of fosamax, etc. I had never heard of this forteo. The last time I was at my Dr.s she said there was actually a drug that builds bone. Is it the stuff you have to inject yourself with every day? Ofcourse she didn't mention any side effects. Then last week I had appoint. with thyroid specialist and he told me that this forteo is usually just used by people that have had fractures. He also told me I could do anything I wanted, if I felt I had the strenth. Digging holes,pushing wheelbarrows, ect. I am 57 years old, t-score on my spine in Dec. was-3.2.

taape · 02-11-2005, 09:16 PM

Hello,
I think it's a good idea to do research before choosing a course of treatment. My osteoporosis was mainly caused by too many epidural steriod injections into my spine. I had all the blood tests also and the doctor couldn't find that I was deficient in any area but with the beginning of menopause I could be. My doctor said that I may or may not have to continue with maintenance medication after the 2 years on Forteo. I can't tolerate the Fosamax so I also wonder what I will do if I do need to continue to medication. For now I am content with daily injections as it doesn't upset my stomach. I hope in the coming years there are more optioins for treatment.

dmarlowphc · 02-17-2005, 07:05 AM

I am a over the road truck driver and was diagnosed with osteoporosis while home on work comp with a broke tailbone and right wrist. I can't use the Fosomax or any of the drugs that are taken by mouth because of acid reflux and the high risk of blood clots some of the oral meds cause. I take Miacalcin. Which is a nasal spray. It doesn't cause upset stomach or any problems with clots. In fact, the only side effect I have had is occassional light nose bleeds. I broke my tailbone and wrist last September 22 and fell again 3 weeks ago up in Maryland in the snow and ice. Didn't break anything this time, Thank God! Just don't know if the Miacalcin had anything to do with it. Hope you can use it as an option to Forteo.

ThinBones · 02-17-2005, 08:07 AM

I have also been prescribed Forteo but waiting to have my next dexa-scan before starting. My endo. said that they may put me on fosomax after a year to maintain bone that has been gained. I also had terrible joint pain from this drug but I would reconsider trying this as I do believe that forteo is the only real bone building drug on the market right now. I have had two thoracic fractures so I feel this is a real risk for me and everyone needs to weigh their risk factors. I was also told that I may take Forteo 3 months on, three months off, a new treatment option they are looking at. Possibly less risky and possibly the same results. I go to a big medical center and they are up on all the new treatment options (I hope). Anyway, I am applying for the assistance program from Lily as I cannot afford the drug and my insurance will not cover my osteo. If I don't qualify, no Forteo as I heard it is about $1000./month. I did ask if anyone has had osteosarcoma from taking Forteo and fortunately no one yet but it is has not been out that long and I do not know the exact statistics. I do feel every drug is a risk, especially the new ones and we all have to do what we feel is right, hopefully with good guidance from our docs. For those on Forteo now, did you have to have bloodwork six weeks after you started and on a regular basis after that? Thanks.......