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3 month TYMLOS findings

Osteoporosis & Bone Health | Last Active: Sep 4 11:48am | Replies (12)

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@awfultruth

@esb13 I'm curious about how many reclast treatments you had. And also whether you improved bone density with reclast. BTW, from another perspective you are not an unlucky one. Going 3 years with no bone loss and no further meds is pretty good. It shows that the Reclast is doing it's job for you. Hopefully the Tymlos will kick in as the others have suggested.
Somewhere I have seen a chart showing typical patterns for P1NP and CTX tests at different months along in treatment. I believe it covered Tymlos also. If anyone has seen this and can provide the link it might be useful for this discussion.

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Replies to "@esb13 I'm curious about how many reclast treatments you had. And also whether you improved bone..."

@awfultruth, a typical pattern of btm changes may apply to rx-naive population only. Once a bisphosphonate was used prior to an anabolic, the normal functions or numbers of osteoclasts get altered to certain degree, hence a different response pattern of CTX. Many factors will be involved: the specific BP used, its the legnth of treatment, length of a holiday, and biological difference among population - all of which complicates the reading. But certainly esb13 could use a regular chart as a reference.

Thank you @awfultruth! I am holding on to every bit of encouragement from comments here. They mean so much.

I had 3 Reclast infusions, 2016, 2017, 2018, then a holiday, then 2 treatments, 2020-2021. Everything stayed basically steady (not statistically significant improvement) - (OP T-3 in spine, osteopenia in hip and femoral neck). My last DEXA in 2023 showed again no changes. I thought this was good news but the docs here (Boston teaching hospitals) are aggressive so I went on TYMLOS in May with the goal to get me out of OP for the spine, where Tymlos has shown the most impact. I also just started to work with a PT 2/wk who specializes in OP, on strength (weights) and resistance training (machine weights and pulley). I’ve worked out my whole life and now need to be careful about what I do and what I shouldn’t do. Clearly something in my body is not allowing new bone to be made. I’d love to know how to dig deep to find out what is preventing me from responding to these treatments. If anyone has a blood or other test that they’ve heard could reveal something, I welcome your thoughts. I have Great Bones but I think that is too much information to present to my doc without impacting the relationship. I hope to hear from my doc next week as these results came back over the weekend. I’d love to see that chart if anyone has access. I’ll try to find it online too.

Thank you so much for your positive thoughts!