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DiscussionSupport For Those Quitting Prolia
Osteoporosis & Bone Health | Last Active: 20 hours ago | Replies (152)Comment receiving replies
Replies to "Hello, After almost 2 years on Prolia, I moved to a new state and new endocrinologist...."
I recently went for my fourth Pro shot after getting a bone density which showed a 9% improvement in my spine in two years of Prolia. I was told that after two more years and continued improvement with no fractures they will switch me to Reclast infusion. No one should take you off Prolia without having another bone density drug to replace it, I’m really shocked that your Endocrinologist would just take you off it. I would advise getting a new doctor.
I am sorry to hear about the compression fractures in your spine and hope that it is not debilitatingly painful.
You may have learned the hard way about the essential need for a follow-up med (often referred to as a 'relay' drug) when stopping Prolia although it appears that such fractures are not unheard of even while on Prolia.
That being said, my doctor (a PCP) also did not know about this. Because of an amazingly improved DEXA score in May 2023, after only 2 Prolia treatments, he too recommended stopping Prolia 'cold turkey.'
Because of this forum, I knew that was likely not a correct approach but how could I convince him?
I sent him this publication. Discontinuing Denosumab: Can It Be Done Safely? A Review of the Literature - PMC
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9081316/
Not only was I surprised that he actually read it, he also immediately put me back on alendronate (Fosomax), which I have been on ever since.
There is some additional information in this publication that you may find helpful.
Most helpful of all is "Great Bones" a book by Keith McCormick which discusses in depth not just the Prolia rebound problem but how to approach follow-up treatment when discontinuing Prolia and how to monitor using bio markers (blood tests).
Otherwise, the posts by @formisc and @dianeflorida un response to yours say everything I might want to also add. You refer to a previous post of mine but I really have no answers to the questions I posed then. If you follow the subsequent posts, there are some studies cited that might provide guidance.
My osteo problem is in my hips. My spine has always been normal except noted osteoarthritis in one joint severe enough to interfere with any density reading. Therefore, I am sorry to say that I have not paid as much attention to vertebral fracture risk when reviewing relevant literature.
Best of luck as you proceed.
@schallgal, so sorry to hear about your compression fractures. Hope you are well now.
I presume you stopped Prolia cold turkey without any follow-on med? That's usually not advisable. Also, did you do any bone turnover marker (BTM) blood tests in particular, CTX? That could give some warning about any possible rebound effect from stopping Prolia
The usual advice I have read from public papers is to use Reclast as a follow-on med after Prolia when you have taken 3(4?) or more shots. In my case, I stopped Prolia after 3 shots and I wasn't keen on doing a 1yr dose of Reclast so I opted to try weekly Alendronate instead and it seems to be working to suppress the rebound