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Support For Those Quitting Prolia

Osteoporosis & Bone Health | Last Active: 6 days ago | Replies (86)

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@michaellavacot

Hi formisc,

Thanks for the complement on the video. I worked for Intel for 20 years and gave a lot of PowerPoint presentations so making it was a lot of fun. And thanks for the response to my post. I think people learn the most from open discussion.

A comment on the Cleveland Clinic video with Dr. Chad Deal. He makes the comment that “so when denosumab is started, I always remind the patient that it’s forever” is absolutely not true and irresponsible based on experts like Dr. John Bilezikian, Dr. Michael McClung (whose study he references), Dr. Serge Ferrari, as well as the studies he references later in his own presentation. Those studies show a rebound effect that lasts for about a year and can be mitigated by taking either Alendronate or ReClast or both. Yes, you will lose about 5% or ½ T-score in that year period for long term denosumab users, but you can gain multiple T-scores being on denosumab. I show some of these studies in my presentation. And to be clear on some of the other points he makes about fractures after stopping denosumab, those are only prevalent is you do not follow with a bisphosphonate. I show some of that in my presentation with details I did not talk to in the backup.

From the trainings I have attended, antiresorptive risk of ONJ or atypical fractures is well below the risk of a major osteoporotic fracture of not taking them, even long term. I have not heard one doctor argue against this point.

I have no idea on insurance coverage of Prolia but I could see that as an issue. If you stop Prolia too early, you are not left with many options to maintain your bone density for the rest of your life.

Prolia has its place, and in my mind, is almost never the first treatment for osteoporosis. But for some people, like myself, Evenity did not get me to a point that a bisphosphonate would get me out of the osteoporosis range. Prolia is the only option left and I will be on it for 10+ years to get there.

Like you, I’m not a doctor. That said, I’m an engineer looking at a whole bunch of data. And agree, I too am just providing my viewpoint so others can work with their doctor for the best treatment plan for them.

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Replies to "Hi formisc, Thanks for the complement on the video. I worked for Intel for 20 years..."

Hi Michael,
Thank you for your quick response.
Much as i disagee with many of your viewpoints, i secretly hope that you are right because, having taken 3 Prolia shots and now transitioning onto Alendronate, i am worried sick about the possibility of MVFs.
Each person will have to decide, based on advice from his/her doctor and more importantly, based on his/her own research on the appropriate treatment for this disease. Personally, i do not want to use a drug that does nothing to stimulate growth of new bone but merely coats over existing old bones especially with all the unique risks that it brings along but i acknowledge that there may be cases where such use may be appropriate.
I have not written off science and i hope that in the near future, we will have effective medicines that can treat this condition safely

About the 'rebound period.' You say that the studies you reviewed show a rebound period of 1 year. In the original post initiating this thread, the rebound period is referenced as 30 months.

That is a significant difference. Would be helpful to know which one is more generally recognized and the source of/authority for that info.

This is an amazing discussion. Thank you.