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Support For Those Quitting Prolia
Osteoporosis & Bone Health | Last Active: Jan 20 7:30pm | Replies (171)Comment receiving replies
@formisc just found this regarding CTX being too low with more risk for jaw necrosis. Mine is 145 and I am delaying my infusion. :
"It measures the C-terminal telopeptide (CTX) value, which depicts the level of octapeptide fragment released due to osteoclastic bone resorption from type I bone collagen.[36] Its levels are related to the number of osteonecrotic lesions, stage of disease, and bone turnover index.[37] A lower value represents a high-risk patient with suppressed bone turnover and reduced healing capacity. C-terminal telopeptide less than 100 pg/ml equals high risk, 100 to 150 pg/ml equals moderate risk, and greater than 150 pg/ml equals minimal or no risk."
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Thank you for your comments, windyshores. It is so comforting to get feedback at this time when i am facing undecision on what to do next
I have read about the risks of low CTX for MVFs, AFFs and invasive dental procedures but had thought that they mainly applied to those on long-term use of Prolia or bisphosphonates. In my case where i was trying to cease Prolia after 3 shots and avoid the rebound effect, i felt i had to complete at least 1 year of weekly Alendronate (nearly all the literature quotes a relay period of 1-2 years) nothwithstanding the persistent low CTX.
Most research warns on the danger of CTX going too high during the relay stage but nothing on CTX becoming too low. And warnings on fractures are those that arise from uncontrolled rise in CTX rather than from over-surpressed CTX. But, on hindsight, i should perhaps have been more reactive and reduced my dosage even from the first blood test post-Alendronate where my CTX was only 51.
It is possible that my CTX was already low even before starting on Prolia and that my osteoporosis was caused not by over-active osteoclasts but underperforming osteoblasts in which case an anabolic would have been the correct prescription. In such a scenario, the Prolia might not have much effect and hence a subdued rebound effect which could explain the low CTX. All these are conjectures as i do not have any baseline stats
I started biweekly Alendronate on 11Jan, having skipped the 4 Jan dose. Now, with the T11 (mistakenly wrote T12 in earlier post) fracture (which i am not certain is a new fracture), i may stop my Alendronate altogether for the next 3 months until i see the next blood test results