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

Posted by roseincalifornia @roseincalifornia, 2 days 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....

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mayblin | @mayblin | 20 hours ago
In reply to @roseincalifornia "@mayblin Thank you so much for your supportive response. Ir is very reassuring to hear about..." + (show)
Profile picture for roseincalifornia @roseincalifornia

@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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@roseincalifornia
My osteoporosis is managed by an endocrinologist. Her original plan was to follow Forteo with 1–2yrs of Reclast. After I voiced my preference for using HRT as the antiresorptive follow-up, she thought HRT could be a reasonable option but referred me to an OB-GYN she trusted to assess whether I was a good candidate. I also received cardiology clearance before starting. Now she continues to see me annually to monitor my progress, while the OB-GYN prescribes and manages my HRT.

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CathyF31 | @cathyf31 | 20 hours ago
In reply to @leslie2121 "I’m planning on getting my dexascan after a year on tymlos and may take a break,..." + (show)
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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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@leslie2121 Be sure to talk to your doc thoroughly about your plan to go from Tymlos to Reclast and back to Tymlos. My limited understanding of this is that Reclast will actually stay in your system for an extended time, even up to 10 years. If that is the case, your second round of Tymlos may likely be very suppressed, due to the anti-resorptive interference from Reclast. That is why the order of the drugs is so critical. Please do your homework with this in order to protect yourself. Best wishes!

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2121 | @leslie2121 | 14 hours ago
In reply to @cathyf31 "@leslie2121 Be sure to talk to your doc thoroughly about your plan to go from Tymlos..." + (show)
Profile picture for CathyF31 @cathyf31

@leslie2121 Be sure to talk to your doc thoroughly about your plan to go from Tymlos to Reclast and back to Tymlos. My limited understanding of this is that Reclast will actually stay in your system for an extended time, even up to 10 years. If that is the case, your second round of Tymlos may likely be very suppressed, due to the anti-resorptive interference from Reclast. That is why the order of the drugs is so critical. Please do your homework with this in order to protect yourself. Best wishes!

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@cathyf31 You make a good point! Thanks.

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hipsalve | @hipsalve | 5 hours ago

I had a delayed reaction to Forteo. After the first year, all of my scores stayed the same except my hip score went down. I was very upset but my endocrinologist said to stick with it. After the second year, all of my scores in every location improved. So sometimes the response can be delayed. Talk with your endocrinologist.

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roseincalifornia | @roseincalifornia | 2 hours ago
In reply to @hipsalve "I had a delayed reaction to Forteo. After the first year, all of my scores stayed..." + (show)
Profile picture for hipsalve @hipsalve

I had a delayed reaction to Forteo. After the first year, all of my scores stayed the same except my hip score went down. I was very upset but my endocrinologist said to stick with it. After the second year, all of my scores in every location improved. So sometimes the response can be delayed. Talk with your endocrinologist.

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@hipsalve Thanks for sharing your experiences. I have been very upset since I got my 12 month REM scan. Both my 6 month and 12 months scans showed decreases is every area! My endocrinologist was concerned I was not correctly injecting myself, so she had the nurse go over the procedure with me. Turns out I am injecting it correctly. Almost everyone else (on Tymlos or Forteo) has had increases in BMD so hearing that you did not, yet still improved the 2nd year, is greatly reassuring to me. Thank you!

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hipsalve | @hipsalve | 25 minutes ago
In reply to @roseincalifornia "@hipsalve Thanks for sharing your experiences. I have been very upset since I got my 12..." + (show)
Profile picture for roseincalifornia @roseincalifornia

@hipsalve Thanks for sharing your experiences. I have been very upset since I got my 12 month REM scan. Both my 6 month and 12 months scans showed decreases is every area! My endocrinologist was concerned I was not correctly injecting myself, so she had the nurse go over the procedure with me. Turns out I am injecting it correctly. Almost everyone else (on Tymlos or Forteo) has had increases in BMD so hearing that you did not, yet still improved the 2nd year, is greatly reassuring to me. Thank you!

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@roseincalifornia I wish you good luck!

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