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By what percentage did your T-scores improve after a round of TYMLOS?

Posted by kathm650 @kathm650, Jun 5, 2025

I am trying to decide whether to make the commitment to try TYMLOS. I have read reactions to the side effects and some saying their scores did increase in this support group.

I would like to ask those that took TYMLOS reply to this post with percentage increase or their improved T-score. Likewise, if you didn’t seen any change (or decrease), can you let me know that too?

I am thinking that if the majority saw high improvement then maybe the side effects are worth it!

Thank you!

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willowmena | @willowmena | 23 hours ago
In reply to @roseincalifornia "@willowmena The REM scores are not accurate. There was a recent study done which showed REM..." + (show)
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@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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@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.

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roseincalifornia | @roseincalifornia | 20 hours ago
In reply to @willowmena "@roseincalifornia coincidentally I had an appointment today with my endocrinologist who did seem to be somewhat..." + (show)
Profile picture for willowmena @willowmena

@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.

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@willowmena Glad to hear you saw an endocrinologist today. Can u ask your endocrinologist to look at your CTX marker? NTX is measured from a urine sample, so varies depending upon the time of day. You might be able to get a remote review of your case by someone at Duke, then a zoom meeting. You are in a tough situation., but it sounds like u are on the right track.

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tulipandrose29 | @tulipandrose29 | 5 hours ago

Thank you for your response. When you received your results did you also get a FRAX score? What medication did you decide on?

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osteopatient2026 | @osteopatient2026 | 2 hours ago
In reply to @njx58 "@willowmena You can't really compare DEXA and REMS scores." + (show)
Profile picture for njx58 @njx58

@willowmena You can't really compare DEXA and REMS scores.

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@njx58
Why do some doctors refuse REMs …my doctor says they are not reliable …full of artifacts…

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