What was Your P1NP Increase on Tymlos at 1 Month?
Curious to know what kind of P1NP increase (bone formation marker) people experienced at about the one-month mark, while on Tymlos. (I went from 52 to 93 = 79% increase. Unsure if that's typical or not).
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Just responding to the original question and adding to the discussion. My baseline P1NP (before starting Tymlos) was 59. After two months on Tymlos, it was 183. After a year, 435, and after a year and a half, 320. At the two-year mark, my last, P1NP had dropped to 86, which was expected. Tymlos stops working as effectively at two years. I have no idea whether all these results are normal or not.
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5 Reactions@cathyf31 Your doctor is really on top of things! I’ve not had any of those tests yet. I think I need to find another doctor. It should not be this difficult to get what’s needed, but here we are. Thanks for sharing, and glad you’re doing well!
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1 Reaction@cathyf31 thanks for sharing those! It's interesting that your CTX increased slightly from baseline after that second (partial) dose of Evenity. Did adverse effects influence that dosing decision and, in turn (along with the bone marker info) lead to the switch to Tymlos?
As you know, Tymlos works by turning up overall bone remodeling process, which eventually affects both markers. Some doctors do tend to only check P1Np during PTH analog treatment (my endo did that until I nudged her to test both), but it's nice to get CTX alongside P1NP to see the full picture.
That jump to 93 in P1Np is a great sign. Hopefully you can gradually titrate up Tymlos to get the maximal treatment benefits. Wish you a successful journey.
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1 Reaction@mayblin Thank you. Yes, unbearable and worsening side effects caused me to abandon Evenity. An overseas trip that coincided with the Tymlos denial/appeal and onboarding process caused the 2-1/2 month gap between Evenity and starting the Tymlos. Side effects caused the Tymlos adjustment down to 40 mcg (4 clicks). After 10 nights, I will be inceasing to 50 mcg tonight. Nobody wants me to titrate to a full days sooner than I do. However, my body does not have a history of cooperating. Expecting the best and being strategic with the titrating.
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2 Reactions@kathleenrmt I did self-pay CTX and P1NP at $150 for both.
I posted more details and links here:
https://connect.mayoclinic.org/discussion/p1np-and-ctx/
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3 Reactions@sebutler what were your DXA results after 2yrs on Tymlos, if you don't mind sharing? I had similarly high turnover with Forteo and had "average" BMD gains across all sites. The antiresorptive phase with HRT led to further solid improvements.
@kfhoz Results? How long were you on Tymlos before testing?
Hi, @mayblin. Happy to share. I started at -4.2 (lumbar), -3.2 (hip), and -3.2 (femoral neck). After 2 years on Tymlos the numbers were -1.8 (lumbar), -2.5 (hip), and -2.7 (femoral neck. I'm now on alendronate (ugh!). I tried to talk my doc into doing it for only a year, but she is pushing for two years, given the research results in Radius's clinical trial.
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3 ReactionsHi Cathy, my pre-Tymlos P1NP was 67 and it jumped to 250 at the 7 week mark.
At the 6-7month mark the side effects on the full dose was really getting to me...lots of random roving bone pain mainly in my limbs, muscle weakness. I am small so dropped my dose to 0.6mcgs and the effects largely went away in two days. When I tried to go back up to the full 0.8mcg dose the came right back. I went back down to 0.6mcgs, stayed there for week-10 days, had another P1NP and CTX drawn on my own and they were still showing fab response (P1NP was now 358) so I went to my doc and he blessed the lower dose. At the 1 yr mark my DEXA was really great... am out of osteoporosis and back into osteopenia. P1NP is starting to come down (289 at 1 yr mark). I am putting this info out there because I think it's a great drug (for people who respond to it) with great promise and hate to see folks abandon when even a slightly lower dose could mitigate the side effects and still give them good results. Radius can't acknowledge this because their testing has been at the full dose. Talk to your doctors! Advocate for yourself! And think about HRT and taking Fortibone collagen! I use AlgaeCal....
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5 Reactions@sebutler Thank you and good luck!! Do you take K2 with your Vitamin D3?