After 1 year on Tymlos only a slight DECREASE in BMD. Please help.

Posted by roseincalifornia @roseincalifornia, 1 day ago

I am 61 years old, T score for spine is -3.1, hip -2.2 (via a DEXA scan). I have been taking Tymlos for 12 months. I have been following my bmd via REM scans. The REM scans at 6 month and 12 month show slightly decreasing BMD. I will take my 12 month DEXA scan next week. I am so scared my DEXA score will also show a decrease in my BMD. I understand one cannot compare DEXA results with REM results, but there is a definite trend in my REM scan scores. I am also very worried that Tymlos for some reason is just not working for me. I have had all my tests: vit D, calcium, PTH, p1NP1 (95!) - all my test results look good, but my BMD is not increasing! Is there a chance it will increase in year 2 of taking tymlos (12 months - 24 months). I read that some people have delayed reactions. Has anyone else here experienced this??? I am so single with no children to help me. I am so scared I will fracture my spine and become disabled. Please help me....

Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.

Please relax. Stress is an enemy of bone density. I had good results with Tymlos. After 19 months, my Dexa scores last week showed improvement-spine 18.5%, hip 7.1% and femoral neck, minor improvement. There is hope!

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I would not go by these other scans. I'm sure your DEXA will show improvement based on P1NP. Let's see how your DEXA scan goes.

Tymlos results can vary. I had an 18% gain, but 15% was in the first year. Other people have more of a delayed reaction. Not everybody gets a big gain. But as I said, wait to get your results.

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I’m planning on getting my dexascan after a year on tymlos and may take a break, depending on my results.
Thinking if I am tired of the side effects I could take a break ( take half-dose of Reclast) then do another year later.
Assuming my pcp will go along with this plan, which I think he will. I’m a retired nurse and am sensitive to drugs- developed an allergic reaction to Evenity after 8 months and had to stop, unfortunately.

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@roseincalifornia
I have a few questions. Were you on any osteoporosis meds (including HRT) before starting Tymlos? Also, in which month of Tymlos treatment was your P1NP of 95 measured and what’s your baseline P1NP? Did you have resorption marker CTX measured also?

For some patients, BMD gains with PTH analogs (Forteo or Tymlos) can take a little longer to show up. My 1st year DXA on Forteo showed only a modest 4.9% increase at the lumbar spine, with slight decreases at the total hip and femoral neck, despite a robust P1NP of 450. The bone marker suggested the medication was working, even though the DXA changes lagged behind.

Hope your DXA next week gives you some reassuring news.

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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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Profile picture for roseincalifornia @roseincalifornia

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.

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Profile picture for mayblin @mayblin

@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.

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@mayblin Thank you so much for your supportive response. Ir is very reassuring to hear about your journey. The table showing your BMD transitions is fascinating. It is very interesting to see the large gains in BMD you received even after the 2 years on Forteo (while on the HRT ). After seeing the results of my REM scan, I have re-adjusted my expectations and will be thrilled if there is just a little gain. And, of course, I would be thrilled if my 2nd year on Tymlos, and following 2 years on a bisphosphate, is similar to your progress.

Just curious.... is there a reason your doctor put you on a HRT immediately after an anabolic med versus going straight to a bisphosphonate? Is your doctor an endocrinologist or a rheumatologist?

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Thanks for your post. I’m early on in my Tymlos “journey” (only six weeks). I see the information about your lab/test results. Aside from the Tymlos, did you do weight bearing or resistance training? Did you take any supplements or change your diet in the 12 months while on Tymlos? In belonging to this group, I’m trying to understand what is working or not working for people. Meds are one aspect, but diet, supplements and exercise are additional data points.

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