Hello, I joined today to get help in deciding what medication to begin

I have been on Tymlos for almost 2 years, going off in June. I’ve had very good results…an 11% increase in bone density in my spine. Side effects have been minimal and taking my injection before bed helps tremendously. Now, I have to decide what to take to replace my Tymlos so I don’t lose my gains. Prolia is out because of rebound fractures, Fosamax is out because of digestive side effects so my cardiologist is recommending bioidentical hormones. I wish I could remain on Tymlos longer than the 24 months but as of today, that’s not an option. As far as bone cancer, that black box warning has been removed. That warning was due to rats used for research developing bone cancer…they also received very high doses of the medication. I did extensive research before making my decision on Tymlos. It took me 2 years after diagnosis to agree to try it. But I have very severe osteoporosis so it was either a bone building drug or a drug that would do nothing for me. This journey is not an easy one but we have a lot of choices. Take one day at a time and do what you believe will work for u. 🌹 Rose

windyshores is the astute poster. She has multiple other qualities as well.

Do you mind me asking your tea scores? I’m -3 and In spine -3.3 in hip with the a fragility break in rib Wanted to do Fosamax, but doctor said it won’t do you good do tymlos or evenity

@isabelle7 the two year limit on Forteo was lifted fairly recently, in September 2021. https://www.ccjm.org/content/88/9/489

Using it for more than two years is still relatively uncharted territory. The effectiveness of Forteo and Tymlos wanes after a year or year and a half for many of us, hence the need for a break.

I have also seen discussion of using Evenity between courses of bisphosphonates or even other drugs.

We need research and we need time, because so much is relatively new in the field. Sadly there is nothing else on the horizon for now so it is all about "combinations and sequencing" (see Dr. Ben Leder's YouTube video of that title).

@windyshores

Thank you for your insight!! It helps me to feel that I'm not going crazy feeling like osteoporosis is the most complicated of his issues (with PMR and GCA there are such limited options for treatment it's more cut and dry. Though some is also still new, such as prescribing Actemra that was recently FDA approved for GCA.)

We finally have an endocrinologist who is testing him to see if he's a candidate for Forteo. We have an issue that has paused us on wanting to start treatment - he has horrible teeth and while he has zero pain in his mouth, we know he needs a lot of work done. I wouldn't be surprised for it to be upwards of $20,000 at this point. When he went in 2007 he needed over $5,000 worth of work done and they are so much worse now.

He's refused to go back to the dentist and has kept how bad it's gotten from me, which you think would be harder than it is. He has an uncanny way of not showing his teeth, especially the bottom ones, when he talks or even when he smiles. Anyway, he finally showed them to me because of my concern over dental work before starting Fosamax (which was first prescribed, now I've learned Forteo would be a better choice for steroid-induced osteoporosis.) All the smaller bottom teeth are very discolored and decomposing, for the lack of a better word. Much of the teeth are gone and they look so odd. Many other teeth have major issues, including needing a new bridge. I finally convinced him to go in early July to have them checked so we really know what we're looking at, and if his mouth is stable enough for years of treatment with these drugs.

What I've read and been told is that if he were to need an extraction of other serious dental work done while on Fosamax he could develop some kind of jaw infection that could lead to major jaw issues down the road. So I paused and during that pause, learned about Forteo and Evenity. I'm still not sure the order of what's best and for how long but we can figure that out as we go along. For now, his bone scan came back on his lumbar spine at -3.4 so I know he needs treatment.

Forteo and Tymlos are okay with dental issues. Evenity has risk, but lower than with bisphosphonates like Fosamax, I have read and been told.

@windyshores

That’s what I’ve heard too. I’ve also heard / read that once you stop taking Forteo you lose bone quickly which is why the need for Fosimax or Reclast. Is that correct?

Do you mind me asking your tea scores? I’m -3 and In spine -3.3 in hip with the a fragility break in rib Wanted to do Fosamax, but doctor said it won’t do you good do tymlos or evenity

Forteo and Tymlos are okay with dental issues. Evenity has risk, but lower than with bisphosphonates like Fosamax, I have read and been told.

Forteo and Tymlos are okay with dental issues. Evenity has risk, but lower than with bisphosphonates like Fosamax, I have read and been told.