Osteoporosis after 20 years on and off of Fosimax now at a crossroad

rfanni, I'm just short of a year on Forteo. I haven't had any negative side effects. Some of us have had side effects, but the medication leaves your system within 24hrs. Most of it is gone in 4hours. I only mention this because if you do have unpleasant effects, they go away in 24hrs and you can try something else. I don't know if my bones are stronger. If my fingernails are a clue, my bones will be hard to break.
See if the doctor will order bone markers P1NP and CTX. It is good to have a baseline reading before you start and one at three months to make sure the medication are working for you.
There are drugs that build bone; Forteo and Tymlos and drugs that preserve older bone: the bisphosphonates. Prolia also preserves older bone but is implicated in osteonecrosis of the jaw as is Evenity which works initially to build bone and after to preserve the bone. Prolia and Evenity have the worst side effects from my reading. I wouldn't recommend either. Best luck in your choice.

It seems your best choice is between Forteo and Tymlos. I chose Tymlos because the dose is adjustable and I am sensitive to meds. I could not tolerate a full dose, so I restarted at 1/4 dose and ramped up, I had excellent gains. I believe both these drugs can heal fractures. Because you have been on bisphosphonates for a long time, effectiveness will be slightly less, but still really helpful.

You inject these meds daily. It is not hard. The needle is tiny. The half life is one hour so half of the drug is gone in that time. Side effects, if they happen, last a couple of hours and ease over time in my experience.

Dental surgery involving bone (like extraction) can be an issue but my dentist says other procedures (root canal) are not a problem with bone meds like the ones you have been on. Good luck!

windyshores, I depend on your expression of how terrible Forteo is, otherwise I can't be comfortable waxing on about how wonderful the medication is. Your experience of trying to stay on the drug and the misery of it, even your final abandonment of it enriches these pages. And, I think, rfanni will choose Tymlos over Forteo if you do.

Thanks for sharing your experience. I definitely do not need any further bone loss in my jaw. Roz

rfanni, Forteo is often prescribed for individuals with osteonecrosis of the jaw to restore the integrity of the bone.

@gently I don't advise anyone to do Forteo vs Tymlos or Tymlos vs Forteo. It is apparent that we all react differently! I hope you can feel free to was on about your experience and I will share mine 🙂 For me the adjustable pen was key. But others do fine on full dose of either....

My issue with both of these drugs is the number of patients that are now being treated for bone cancer.

rfanni, when Forteo was being studied in R
Osteosarcoma, a found in rats that were given very large doses 3 to 60 times the dose given in humans. Repeat studies in monkeys did not reveal the risk of cancer. The rats developed a rare form of osteosarcoma so the FDA constructed a black box warning and approved the use of Forteo for less two years max.
The Wisker rat was also found to be predisposed to devloping this type of cancer.
After market studies found no evidence or connection to Forteo use and bone cancer. And a surveillance study involving over 75,000 patients from 2009–2019 found no cases of osteosarcoma.
The suspicion of osteosarcoma with Forteo use was dispelled, the black box removed and now we can take Forteo for many years.
I have found that even some endocrinologists are unaware of the black box removal or the extended studies.

Osteosarcoma is not the only form of bone cancer. Johns Hopkins warns about is use if one already has/had a bone cancer.

If you have metastatic cancer, none of the bone building drugs are a good idea- Forteo, Tymlos or Evenity. Ditto bone cancer. But there have not been any sarcoma cases CREATED in bone by these drugs.