Bone care choices? (After 2nd atypical femur fracture)

Posted by doglover71 @doglover71, Jan 25 11:30am

I'm scheduled to start Evenity next Tuesday to come off Prolia. I'm so nervous!

My issues started in my 30's (now 71) when I had a horseback riding accident that left me with a 2nd lombar and right pelvic fracture. Upon seeing my bones thinning near the spinal fracture site, I was put on Fosomax before it was known to take the drug for only a short time. I was on it for decades. Then 13 years ago, 11 months after an orthopedic surgeon told me to stop taking the drug, I had a spontaneous fracture in my right femur that was identified by a doctor to be a side effect of the drug. Since my bones were still showing signs of being osteopenic, I was advised to take Prolia. This was about 8 years ago. I am now recovering from an atypical femur fracture in my left leg that occurred on 11/26/2023. My rheumatologist wants me to come off Prolia immediately and go on Evenity for the transition off Prolia but is not sure about what to do next since Evenity is only recommended for 1 year.

I'm wondering:
What bone care path others have taken after having similar fractures?
Has anyone safely come off the bone drugs? How and was it successful for you?
Lastly, does anyone know where else I can go (literature or doctors) to research information to help me with my future decisions.

Thank you!

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windyshores | @windyshores | Jan 25 11:54am

Keith McCormick's book "Great Bones" available online
Dr. Ben Leder's video "Combinations and Sequencing" on You Tube

Generally people go on Reclast after Prolia to "lock in gains" and avoid the sudden and drastic drop in bone density and increase in fracture risk when you stop Prolia. McCormick writes that the timing of the Reclast is important and needs to be based on blood tests (CTX, P1NP).

I am not sure why you were put on an anti-resorptive, Prolia, after another anti-resorptive, Fosamax. I think you might need an endocrinologist who specializes in osteoporosis because it seems like you are in a pickle. I read that Tymlos and Forteo don't really work after Prolia and I don't know about Evenity. It is new and there is not a lot of info on it.

If you had osteopenia, your fractures may be from the drugs. I wonder what your DEXA scan says now? If still not too bad, maybe you could do Reclast once and then stop. But don't stop Prolia without something! I hope you can find an expert to advise you on Evenity after Prolia. The company recommends them the other way around !

doglover71 | @doglover71 | Jan 25 12:13pm

Thank you for your comments.

windyshores | @windyshores | Jan 25 12:26pm

In reply to @doglover71 "Thank you for your comments." + (show)

Keep us posted. Honestly, we are all between a rock and a hard place with these bone issues and meds!

ymv | @ymv | Jan 26 6:45am

@doglover71 , I have some similarities to you. Was on Fosamax for many years then transitioned to Reclast for 5 years. April 2021 Dexa showed severe op and I was started on Prolia. Jan 2022 I had an atypical femur fx. March of 2023 I had 2 spontaneous fx requiring surgery. At the time was told that I failed Prolia and only option was Tymlos to build bone. Not sure what will happen after Tymlos. Rheumatologist wants to resume Prolia. Have an appointment with new endocrinologist in a few weeks for her opinions on treatment. Will repeat Dexa in June after 1 year on Tymlos. Recent CTX and P1NP levels slightly increased after 6 months on Tymlos.

rola | @rola | Jan 26 8:18am

. .. And some physicians wonder why we ask hard questions and test their patience on osteo knowledge.

So sorry that you've experienced so many difficult fractures. I'd be leary of the Prolia recomnendation after such fractures and try Dr McCormick by phone if possible. That's just me, xo.

rola | @rola | Jan 26 12:18pm

*leery

sallyj2 | @sallyj2 | Jan 26 8:46pm

In reply to @ymv "@doglover71 , I have some similarities to you. Was on Fosamax for many years then transitioned..." + (show)

If your CTX and P1NP are rising, does it mean you are still losing bone?

ymv | @ymv | Jan 26 10:55pm

No it means that the Tymlos is working. The levels didn’t rise much from baseline but at least they are heading in the right direction. I also had my vitamin D level checked and it has increased after the initial drop 3 months ago. However, it required me taking vitamin D 5,000 iu 3 times a day to bring it to an acceptable level.

windyshores | @windyshores | Jan 27 6:33am

In reply to @sallyj2 "If your CTX and P1NP are rising, does it mean you are still losing bone?" + (show)

@sallyj2 P1NP measures bone formation activity and CTX measures bone turnover activity 🙂 A rising P1NP is exactly what we want.

doglover71 | @doglover71 | Jan 27 8:40am

In reply to @ymv "@doglover71 , I have some similarities to you. Was on Fosamax for many years then transitioned..." + (show)

I was also told that I had failed Prolia and it was suggested that I immediately transition to Fosamax which is what precipitated my first femur fracture. My doctor then recommended Evenity but does not know what would be next. I'm going to get another opinion on treatments too but am forced to start something now because I'm due for the Prolia shot now.