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After 1 year on Tymlos only a slight DECREASE in BMD. Please help.
Osteoporosis & Bone Health | Last Active: 4 hours ago | Replies (7)Comment receiving replies
Tymlos is the 1st osteoporosis medication I have been on. Last year when I was 60, I got my dexa scan and was shocked that I had severe osteoporosis in my spine (t score -3.1), and osteopenia in my hip (t-score -2.2). My baseline P1NP was 55 (taken pre-tymlos), and I just had my latest P1NP (value=95) taken after 12 months of Tymlos. Sadly, my endocrinologist never got my CTX measured.
So I assume you just passed your 12 month mark on Forteo? If so, I hope u get more increases in months 12-24. Frankly, after seeing my consistenrt BMD declines on the REM scans, I will be grateful for a flat result on my upcoming DEXA. My worst fear is that the drug is causing my more bone loss.
BTW: I have read a few sources on the internet saying these anabolic drugs spend time building skeletal microarchitectures first, before mineralizing with calcium, so slow responders may be spending more time in the "building microarchitecture" phase which the DEXA (and REM) scans do not see.
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@roseincalifornia, the ~73% increase in P1NP indicates that Tymlos is working as expected; and that P1NP would have been even higher earlier (2-6mo). This level of of response is associated with meaningful gains in bone mineral density. As you pointed out, newly formed bone (osteoid) can take months to become fully mineralized and show up as measurable gains on DXA. I've read that beyond that, secondary mineralization continues for up to about 30 months.
I was diagnosed with osteoporosis at 59, with slightly worse T-scores than yours. I've since completed Forteo treatment and am now in the maintenance phase. My progress is in the table here: https://connect.mayoclinic.org/discussion/forteo-teriparatide-followed-by-hrt-my-experience/
As you can see, the BMD gains were slow at first and accumulated gradually over time and ultimately became quite significant.
I know all the uncertainty can make us anxious while waiting for the next scan. But your P!NP response is an encouraging sign and hopefully your upcoming DXA will begin to reflect that progress.