Prolia discontinuation

I've been on prolia 4 years.
I was diagnosed with smoldering multiple myeloma 13 months ago.
These drugs all have risk
I didn't know this could cause my incurable blood cancer, smolderingmultiplemyeloma. Not a 100% this caused what I have but if they had warned me I woukd had declined prolia

sallik74, so sorry this happened to you. Thanks for the warning aforll of us. Will you be taking Reclast. This article suggest more frequent doses of zoledronic acid with multiple myeloma https://pmc.ncbi.nlm.nih.gov/articles/PMC11018794/

@awesomemomx2

Check out the JasonHeath website: I think their pricing on bone markers might be better than Ultalabs.

Also, I’m curious: would you consider more frequent CTX testing at this stage, since your CTX level is right around 212, and it might change quickly? If you end up needing Reclast, how long does the process typically take from the decision to the infusion, including prescriber input, prescription, and scheduling?

@mayblin
I have a request in to my doctor asking for another CTX in 6 weeks. I am waiting for a response. If I don't get one by tomorrow I will call and see if I can have him call. I had also requested a virtual visit to discuss the situation. This Mayo so no assurance any of this will take place.

@awesomemomx2
A 6wks recheck sounds like a great plan, it should help clarify whether your CTX is stabilizing or still creeping up. Hopefully Mayo gets back to you soon so you can discuss next steps, including whether Reclast might be a good fit. All this information gathering, planning, and coordination take a lot of effort. Wishing you a smooth transition off Prolia!

@mayblin Thank you so very much for your encouragement and response. It is a difficult decision. I am now dealing with a dental issue which could complicate the situation. I am praying it will be resolved without the need for additional treatment.

@awesomemomx2
I was trying to find out if anyone starts Prolia with a lower dose, and found this article
- Discontinuation of Denosumab: Gradual Decrease in Doses Preserves Half of the Bone Mineral Density Gain at the Lumbar Spine https://pmc.ncbi.nlm.nih.gov/articles/PMC10339081/

Nothing on starting with a lower dose, yet.

@gently FYI: When I tried to open link I got a 404 message article not found

https://pmc.ncbi.nlm.nih.gov/articles/PMC10339081/
"...in our study, that an injection of 15 mg of Dmab is sufficient to prevent bone loss and maintains CTX at a low level in most patients." I'm not sure how interesting this is to anyone, anyway.

I have been reading through the thread from the beginning. It contains a lot of helpful info. Thank you all who have contributed to it. Everyone's contribution is helpful. Update here is that my Endocrinologist( even though he said he did not believe it was necessary) was willing to support my request for a CTX and P1np testing schedule of now in October again at 6 weeks and again before I see him in January . Of this I am thankful. My first P1NP was a 33mcg/l and CTX at 225pg/ml. Doing the conversion I believe I had a ratio of 146.66. I don't really understand what that means. I saw in one paper the desire to have the P1NP below 30. If anyone can give me more info and research about this I would appreciate it.