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Profile picture for roseincalifornia @roseincalifornia

@willowmena The REM scores are not accurate. There was a recent study done which showed REM is not an accurate tool for measuring true bone density. Do a google search to find this study. DEXA is not a perfect measuring tool, but it is good enough.

See my post:
https://connect.mayoclinic.org/discussion/tymlos-results-from-dexa-scan-after-12-months/
Please do not discontinue the tymlos. My endocrinologist said she has never seem someone who took it whose bone density did not improve. It is also very important that after 24 months of tymlos, you take a bisphosphonate to lock in the gains, otherwise they will be lost.

I know your situation is more complicated than most, but I hope you are seeing a good endocrinologist. Best wishes to you, and keep us up to date on your progress!

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Replies to "@willowmena The REM scores are not accurate. There was a recent study done which showed REM..."

@roseincalifornia so what does work if REM is not accurate and DEXA is not available for someone with my spine damage? Did I read something about a CAT scan or some alternative method for measuring bone density or trabecular bone health?

@roseincalifornia coincidentally I had an appointment today with my endocrinologist who did seem to be somewhat perplexed by the fact that my P1 NP marker went up but my NTX, which is similar to the CTX, but on a different scale, more than tripled and should not have gone up that dramatically. Bone resorption appears to be out pacing bone formation. She did feel it was too early for Tymlos to show an effect and when I asked her how we would ever know, she said you really don’t know whether Tymlos is working, at least in my case. I said, I guess I need to take a hard fall and if I don’t break anything, I’m OK. She smiled. She has known me for many years. She did say there were bone study centers but it would take a bit of travel to get to one . I’m in Florida, and I believe the closest that she mentioned was at Duke university. I’m afraid the science is not absolute and in cases like mine where neither hips nor spine are available for accurate analysis, I just have to keep my fingers crossed. I jokingly tell my friends I’m melting.