Prolia discontinuation

Doctors dont seem to know enough about prolia

to brunobozo
I have done recently some research on the knowledge about prolia, and I disagree with your opinion. There is a lot of clinical data about benefits and risks of prolia (and on the mechanism of action), also in the long term studies (up to 10 years). The article I put below cites studies on the different ways of discontinuation of prolia, as it seems now to be one of the sensitive points.
https://pmc.ncbi.nlm.nih.gov/articles/PMC8799550/

Because there is clinical data does not mean that the doctors we are seeing have read and understand that. I think I surprised one when I told her Prolia is out for me as I can not risk any reduction in my immune system. I have a stable blood cancer and low globulin count. Any infection could be very serious for me.

Hi I've posted a few times about my dilemma with trying to transition from Prolia to something else due to complications with dental work and possibility of ONJ, but I've never really read the breakdown of what happens during rebound when you go off of Prolia. This is pretty scary given the fact that I have been on Prolia for 6 years, meaning I've had at least 12 injections if not 13. I am due for a Prolia shot end of December early January but I'm waiting to get into the endocrinologist to evaluate my parathyroid activity, which is elevated, and to see what my options are for weaning off Prolia. This doesn't sound to promising to me. Does anyone on the thread know just how long someone can be on Prolia before there are other long-term effects? I'm only 70 years old. What if I stay on Prolia till I croak? That could be another 15 years and 30 more shots?? Why was this medication even put on the market? Certainly wasn't told that people who have extensive dental work should not go on it, not by my doctor... I found out on my own.

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

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

@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.