Support For Those Quitting Prolia

Thank you for your kind words and encouragement, Mayblin. And thanks for the article link - it may be the answer to one of my questions, about why CTX remained low with the fracture, assuming the fracture is recent.

Initially, my plan was to do the next CTX at the end of 3 months just before i transition to tri-weekly Alendronate. But now, if i do decide to stop Alendronate completely, it prob would be safer to do the next CTX earlier - perhaps in early Mar instead.

I remember there was a paper that mention how much CTX goes up for each month of cessation of bisphonate use - need to see if i can find it again. That could affect when i time the next BTM test

The research paper you linked, like most others, was referring to vertebrae fractures caused by high CTX post-Prolia. It is an odd situation to be in - having to worry about CTX being too low during the relay stage!

McCormick writes in "Great Bones" that it is better to do CTX when getting off Prolia, and wait until it rises to do Reclast (I know you were doing alendronate). The suppression of turnover from Prolia can last awhile (presumably more than 6 months). That seems like a likely explanation for your CTX. In line with his advice, you would wait for a CTX over 100 (my link above had an even higher cut off) to do Reclast.

Since alendronate is weekly and Reclast is annual usually not sure how that translates but it seems like the CTX should be higher than 50- and 100 or above. Prolia discontinuation in theory causes a rapid rise, and that is what to watch for according to what McCormick writes.

I have no experience with Prolia. My CTX is 145 after low dose Reclast and I am going to try to get it tested monthly. When I see it rise I will do my next dose. I may be driving my patient doctor crazy and the medical system just standardizes everything so we struggle to customize.

That is very true, windyshores. If using Reclast to relay off Prolia, it is better to time the infusion as Reclast is a 1-yr dosage and using it at the wrong time would render it much less effective. I have read that for Alendronate, it is not necessary as Alendronate is a weekly dosage so timing is less of an issue. That is unless the rebound is somehow delayed for more than 18 months after the last Prolia injection. Usually however, the rebound may start to happen as soon as 6 months after the last Prolia. In any case, I didn't even find a doctor who knew how to order the BTM test until 3 months after i had started on Alendronate. And i didn't come across any guidance on what to do if one encounters low CTX during the relay stage

Btw, how long has it been since your last result of 145 and what is your target level to do the next infusion?

My 145 CTX was last month. I asked for it before doing my next infusion. My doctor thought it reflected suppression from a recent infusion and I reminded him that I had not had the one scheduled.

I figured things would be different with alendronate in terms of timing since it is weekly. So the issue isn't effectiveness, as it is with Reclast, if done too early. But the issue might be over-suppression of the Prolia is still keeping the CTX down. You are probably fine: I think McCormick is referring to over-suppression over time.

Doctors all vary so much in how they approach bone marker testing. Hope you get answers from your MD!

Finding and posting that paper about CTX level rising each month in relation to bisphonate cessation would be appreciated.

Sorry to learn about your recent CTX result falling back into the mystery zone. You already know the reason for my concern about low CTX numbers, having had dialogue on this issue previously, including the perspective of McCormick from his book. You may also recall I am interested in what produces strong bone and that this may or may not be connected to what we typically measure.... bone density.

Your information about a newly discovered fracture obviously raises some concern. Did you have pain or any other symptoms that caused you to seek a spinal xray? Even though many such fractures apparently result without acute trauma, can you recall anything that might account for the fracture.? What is your level of physical activity?

Your situation now appears very similar to @awesomemomx2 and hope she will chime in here. As I recall she consulted with McCormick about low CTX numbers and her desire to stop Prolia. She also had a couple of spinal fractures and McCormick asked for follow-up that would hopefully shed light on whether the fractures occurred while on Prolia or pre-Prolia. I think her next scheduled Prolia injection could be this January. Hate to rely on my recollection but this forum is just too difficult/time-consuming to research/review prior postings.

Have you ruled out any other possible causes for a low CTX score?

Does Mayo Clinic in Jacksonville have a doctor I could make an appointment with to assess my bone density and treatment? In March I will be up for a 4th injection of Prolia. I have moved from Florida to a rural area in Georgia and there are not any specialists.

Hi rjd,
It is difficult to make any conclusions without knowing if my fracture is an old or new fracture. Unfortunately, i did not think of doing a spinal scan before starting on osteo meds as like many others, i started on meds with very little knowledge of osteoporosis. I did the recent scan not because of any pain or suspicion of a fracture but as a record upon completion of 1yr on Alendronate. I had several falls onto my front in the past (last was over a year ago), any of which could have resulted in the fracture

I had raised the question of whether my persistent low CTX perhaps indicated that the fracture was not new (as fractures lead to increased turnover and higher CTX) and gently pointed out that it might not be easy to catch the period during which CTX is raised.

But i also just came across the following from an article entitled < Bone turnover markers to monitor oral bisphosphonate therapy> "Therefore, BTM testing may be unhelpful in patients with recent glucocorticoid use (resorption markers rapidly increase, formation markers decrease), recent fracture (resorption markers double in weeks, formation markers double in roughly 3 months and stay elevated up to 1 year), or autoimmune conditions affecting bones (eg, rheumatoid arthritis), where markers do not correlate with disease progression or treatment effect."
where it mentions that fractures could cause elevated CTX for up to 1 year. However, as mine is stated as a mild fracture, the 1 year period may not be applicable

Yes, i hope awesomemom2 will be able to chime in. It's important to know if there is a risk of compression fractures as a result of low CTX arising from even short-term use of Prolia/bisphosphonates (as opposed to the risk of AFFs and ONJ from long-term use) - it would have a big impact on the use of such drugs