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Prolia discontinuation

Osteoporosis & Bone Health | Last Active: Dec 19, 2025 | Replies (206)

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Profile picture for awesomemomx2 @awesomemomx2

On January 2025 after 2.5 years on Prolia. (5 Shots). Started my transition off and switched to alendronate acid (Fosamax). I have done CTX testing every 3 months since then. My CTX has slowly but steadily been climbing and is now at 225. It climbed my about 20 points in the each of the first 3 month to taking a almost 40 point increase in the last 3. In Grassi et.al study found it should stay at below 212 if BMD was not going to diminish. Would be time for Zoledronate acid? It would appear to me I would be at a point that additional considerations need to be discussed. I have handled the Alendronate well. I exercise regularly including weights and have an overall good handle on my diet using supplementation. I have had a very high 24 hour calcium number in the past of as high as 456 in Dec. 24 which as dropped to 267 in Sept 2025. This seemed to be more of a concern of mine than my physicians, however. I will have another DEXA in January and another CTX. That will be the 1 year marker since coming off Prolia. Besides Grassi et al article “Zoledronate after Denosumab Discontiuation: Is Repeated Administrations More effective than a Single Infusion” I would suggest reading Lamy et.al “Denosumab for osteoporosis treatment : when, how, for whom, and for how long. A pragmatic approach. From the journal entitled Aging Clinicial and Experimental Research published 2025. Ladies, I would appreciate your feedback on your thoughts about my next right step. Thank you

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Replies to "On January 2025 after 2.5 years on Prolia. (5 Shots). Started my transition off and switched..."

@awesomemomx2

Thank you so much for your very helpful account of your efforts to discontinue prolia along with the research citations. I will have to read these papers before I can comment further. I am meeting with my endocrinologist next month to work out a plan for discontinuing prolia after one year.

@awesomemomx2, like gravity3 I appreciate your post. Are you following yourself or is there a really good endocrinologist involved. Because it sounds like you are calling it.
"CTX levels > 212 ng/L had 100% sensitivity for identifying patients with worsened BMD at follow-up and might therefore be the cut-off to aim during the follow-up to obtain BMD stability [42}" From your link, which I would never have seen without your help.
_____________________________So my thought would be extraneous___________________________
There is a process called Prolia calcemic rebound. And while for most Prolia is more likely to cause hypocalcemia. Some experience hypercalcemia during treatment. You are way ahead of the game, so I assume you are keeping track of your kidney function.
I'll be watching for the next bone life episode. And any more links.

@awesomemomx2 I had posted my situation earlier as I had 4 shots of Prolia with the last one a year ago. I met with endo doc who I asked for ctx and other tests but she declined because I chose not to go on another pharmaceutical drug for osteoporosis . I will see my GP in 2 months and discuss, but so far no issues but know I have a way to go. So many things these doctors do not know about osteoporosis as far as things like not using same facility for your department scan, I was never informed that it's apples to oranges if you did not use same for another scan, also was never told my osteoarthritis in spine and neck could make my dexa look better than it is and that I should have a Rems scan not dexa. Never mention the hit on immune system either which caused much if the side effects. As one doctor I heard said osteoporosis is an epidemic and no good treatment nor enough resources or research. Very disheartening for us. One day at a time.

@awesomemomx2
Do you have to go on to other meds if you get off Prolia shots? I just wanted to get off of them since I've been having bad pain in both legs and my right hip since April of this year. Started on Lyrica a couple of months ago as Tylenol or other pain meds didn't help. Can't hardly stand on my legs when I get up in the morning. I contribute that to the Prolia shots, even though my daughter doesn't agree with me. I read the side effects and that's what I think! Please let me know about taking other meds after you get off of the Prolia. Thanks
Joan