disappointing results: would you continue or skip 2nd year of tymlos?

@katwhisperer is Tymlos your first med?

I did 2 years but my blood tests showed Tymlos was no longer working at 18 months. I think it is reasonable to stop between 12 and 18 months depending on P1NP and CTX blood markers.

What will you do afterwards?

@windyshores you had marvelous dexa results at end of tymlos. Did you have a significant dexa improvement at mid point of therapy? Sometimes I read that P1Np readings could precede bmd increase by 6-12 mo, maybe calcification process takes longer than initial bone building, hence bmd improvement shows up later?

@katwhisperer windyshore has a very good point. If your t score/bmd reading is still low after 1 year of tymlos and you stop here, whats next is crucial and this needs to be sorted out with your doc carefully. Do you have a tbs reading?

@mayblin my much improved DEXA was at 18 months. I kept going for 6 more months as my docs recommended because, as you say, the P1NP didn't necessarily reflect what was going on in my bones. Thank you for providing info on that more specifically!

@katwhisperer I hope you can try Evenity!

I’m only 9 months into Tymlos and recently had bone markers done. Very little increase in both p1np and ctx. From what I’ve read the 18 month mark is the best. Yes, it’s very expensive but, personally, I will continue as there aren’t many other options for me. From reading some posts, Tymlos treatment time may be extended beyond the 2 years. What will you transition to after Tymlos?

Could someone please explain about this these "markers" in your blood? I've been to a couple endocrinologists, and a doctor specializing in osteoporosis, and no one has ever done it talked about these blood tests. Thank you!

@susyt many doctors don't do these tests. Simply put, the CTX measures bone turnover and P1NP measures bone growth. CTX would seem to be relevant to Reclast, Fosamax and Prolia. P1NP would be relevant for Forteo, Tymlos and Evenity, though we get both markers for all treatments.

My doctor is head of endocrinology at a top teaching hospital doesn't do them. He said there could be a whole conference on this topic. He said the blood tests don't give the whole picture of what is going on in bones.

I saw another endo who does do them. I also saw the chiropractor, Keith McCormick, an expert on osteoporosis, and had my PCP order the CTX and P1NP, while keeping my wonderful doctor.

From my experience I am not sure how useful the tests are. I am awaiting a P1NP after my first Evenity and it should be higher- we'll see.

I was on Forteo for 2 years. The first year I gained, the second I had a .1 decrease. Had my doctor done bone marker tests more regularly, we would have had the appropriate info to stop at a year.

Are you holding with HRT?

@windyshores: thank you for your post. Yes- this was my first osteo med ever. Doc stated I should stay on it two full years, but I get the sense that's just his direction to every patient on Tymlos, as long as they're tolerating it well. He didn't do any blood marker tests.

He did screen extensively for any secondary factors before I began: I was cleared on that.

@mayblin Thanks for your insights and windyshore's as well! I do greatly appreciate you both responding.

Based upon my last conversation with my doc, he's firmly in camp of doing the full 2 years. But this was BEFORE my 1 year DXA results. Curious if this will alter his thinking when I see him soon.

Yes...I have been debating next steps if stopping. A Bisphosphonate would only maintain the little I gained. I was hoping to keep Evenity in reserve as an option for AFTER full 2 years of another bone-builder - vs use it up too soon, if that makes sense?

I wonder if switching to Forteo for 6 mon-1 yr might be the fresh "shot" my body needs- no pun intended 🙂 to improve hip density, since F seems to do better on hips than T? Would have to ask doc about any risks switching midstream.

To be fair, for all I know Tymlos DID stop further loss, so don't want to do anything dumb, just because results aren't as good as I hoped. Just feeling really discouraged.

I did get TBS scores last year before starting Tymlos and again 1 year later (from the same machine.) I just don't understand what they mean or how to interpret them. I need to google and see if I can figure that out.