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← Return to P1NP number on Tymlos
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Here is my update:
I’m also trying to decide between prolia or reclast. I have been on tymlos for 10 months and I’m one of the few they call a non responder. My bone markers were tested every 4 months: CTX went from 389 to 485 to 695 and P1NP 42 to 85 to 97. My Dr. consulted with the Tymlos manufacturer’s medical team and another endocrinologist who specializes in bone. They are all saying I need to stop the Tymlos and get a reclast infusion or do prolia for 2 years and follow that with the reclast infusion. Due to being out of the US until
June I have decided to continue Tymlos until I get home and can get another DEXA. (DEXA is scheduled for june 8) Once I see how that compares I will decide on prolia or reclast. My Dr seems to lean more towards the prolia first with a follow up reclast infusion but he wants me to make the final decision. I’m so torn! How does anyone really know if they will or will not suffer from side effects? I’m 67 and try to keep up on my on my weight bearing routine but I admit I am not religious on that however I do planks everyday, walk regularly, play some pickle ball, eat healthy and limit alcohol. I’m not thrilled with these results and would appreciate suggestions, experiences and input on how to decide? I have to do some kind of antiresorptive!
Replies to "Here is my update: I’m also trying to decide between prolia or reclast. I have been..."
@lurawilson You may want to check out the videos below done by OsteoBoston as you ponder your options.
One is with Dr. Marc N. Wein, MD., PHD an Associate Professor of Medicine at Harvard Medical School. The second is with Dr. Michael Lewiecki, MD, FACP, FACE, CCD, FASBMR, researcher, Director of New Mexico Clinical Research & Osteoporosis Center.
The Future of Osteoporosis Treatment
"Healthy Bones, Medications and Common Sense" with Q & A
@lurawilson, if you are comparing your numbers to some of the 'robust' responders, then you might feel discouraged. In my opinion, your bone markers may not look 'robust,' but the response surely was not absent. Ultimately, the DXA will show the final verdict, and I hope you keep everyone posted.
You mentioned in an earlier post that you were using HRT - are you still using that alongside the Tymlos? If so, would you mind sharing when you started HRT in relation to your Tymlos start date? Thank you!
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@lurawilson, hi.
by your fourth month on Tymlos your P1NP had doubled. By my reckoning your body is responding. Your relationship CTX to P1NP has changed from 9.2 to 7.1 in the right direction.
You may be a slow responder, but you aren't non responder. I see the ratio of 5 to be a balance.
Your body may recognize that you have a lot of bone that is weak and needs to be replaced.
I was in a similar situation with, the similar to Tymlos medication, Forteo. I had little change in markers and no change on the one year dexa (--a success because I hadn't lost bone). i hope you give Tymlos a chance because it is raising your P1NP in relation to CTX.
The endocrinologist I see looks at the rise in P1NP, which is actually the only "approved" use of bone markers.
If your dexa shows no loss you might take it as an omen to continue Tymlos. Make sure to have another bone marker test before switching to drugs that increase bone density by preserving older fissured bone. The cells that leave CTX in your bloodstream are not attracted to healthy bone.
I really like that your endocrinologist wants you to make the choice.