← Return to Prolia adverse events over 10 years - ONJ, AFF

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@windyshores

My doctors don't use Prolia unless there are absolutely no other options. My endo joked that he might prescribe it near retirement so he doesn't have to deal with anyone trying to get off!

@Michael Lavacot, -1.0 or even -2.0 is out of reach for many of us. No matter what I do, I will never get better scores than -2.5 in spine and femur neck will remain -3.5 or so. So many of us cannot afford to "plan on losing about 0.5 T score after transitioning to a bisphosphonate."

It is not just about bone density changes: it is about increased fracture risk as well.

I am not sure if there is more risk for females past menopause who no longer have much estrogen vs a male. Have you researched that?

The relative safety of 2-3 injections of Prolia in terms of rebound in showing up more on this forum and apparently McCormick encourages this. That is encouraging, because Dr. Ben Leder's video on YouTube shows how very effective Prolia can be, on its own or in a complicated combination with anabolic that he demonstrates. Again, until you stop.

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Replies to "My doctors don't use Prolia unless there are absolutely no other options. My endo joked that..."

Hi @windyshores - I agree that Prolia is a last resort drug. I would not be on it now if I really had a choice. If your BMD is really low, there are almost no other ways to bring it down without using Prolia in your treatment plan somewhere. The only other option I know would be to use an osteoanabolic followed by a bisphosphonate, then back on an osteoanabolic. You could cycle this pattern until you achieved your target, but good luck getting your insurance company to cover it. The realistic path is osteoanabolic followed by Prolia until you can transition to a bisphosphonate.

I’m at -3.9 in my L2 spine after taking Evenity. I have no realistic path to get to a safe zone without Prolia. It might take 10 years or I might never be able to reach it. If Prolia stops working, hopefully new options will become available. I still have one trick left which is combination Prolia + Tymlos or Forteo. I’m going to wait a year or two before I make any discissions on that.

Fracture risk follows BMD pretty well. I understand the bone structure plays a big part in strength which is why I started with Evenity.

Not sure what you’re asking on the female versus male question. I’m on meds to raise my testosterone, which converts to estrogen and helps bones. If I were a female, I would definitely be on estrogen. My wife is on estrogen.

There is definitely a transition point when taking Prolia. I discussed this in the Prolia presentation I put together based on the trainings I have attended https://youtu.be/XiRN3UvOEYg?si=PpnSpazr00QF-rnz . The rebound effect is related to how long you have been on Prolia and your baseline CTX. If you have good enough bone strength after a year or two on Prolia, great, transition to a bisphosphonate. If not, you should likely continue on Prolia and factor in the rebound before you transition. This is the story I hear repeatedly on trainings.