3 month TYMLOS findings

esb13, prior bisphosphonate use will slow the effect of Tymlos. I have read that there is a 6 to 12 month lag after Fosamax. Reclast binds more tightly to the bone than any of the other bisphosphonate medications, which is why it works so well long term to prevent fractures.
Your endocrinologist will order a six month and I suspect a 12 month P1NP.
Reclast stops the cells that break down bone, but the bones have to breakdown before they can be rebuilt.
Tymlos is trying to recruit those bone breaking cells. In a sense your medication are working against each other.
Eventually Tymlos will win.
I agree it is all so mind-bending.

@gently - THANK YOU so much for your amazingly hopeful and knowledgable reply. My mind is now filled with: "Eventually TYMLOS will win". Amazing what encouragement does for the psyche. I did not know this about prior Reclast treatment! I was fearful they would take me off TYMLOS with such poor 3 month findings. I hope now they will let me hang in there for a 6mo and 12mo check-in. I cannot thank you enough for giving me hope. I have no side effects - none- from the TYMLOS and after seeing the results was wondering if that was a sign it was not working. But I will breathe deep, harness your positivity and realize this is a marathon not a sprint and keep trying my best.

Hi @esb13, @gently explained the possible reason for your bone markers' response really well. If I were in your shoes, I might want to have both p1np and ctx monitored every 3 months going forward if there are no problems with lab ordering or payment. The greatest increase in p1np during Tymlos' therapy tends to occur in early months for treatment-naive patients. Since you had prior reclast treatment, the increase in p1np may be delayed like @gently had explained, although it might be hard to predict the length of delay.

Before you started Tymlos, were you on a drug holiday from reclast? If so, for how long?

Best wishes!

Testing every 3 months sounds like a great plan. Last reclast infusion was a while ago - 2021. And my DEXA held steady during the holiday with no change in spine (t-3) and no OP in hips or Femoral neck. So I may be one of the unlucky ones re: TYMLOS but I will think positive and hope I improve slow and steady.
It's so very mentally taxing knowing I have OP but have no outward symptoms - I am not used to this level of health concerns and uncertainty about treatment and extent of possible disappointment after so much hype about TYMLOS and no sense of next steps if I do not improve.
Thank you so much @mayblin for your kind support and time to share your thoughts.

@esb13 I'm curious about how many reclast treatments you had. And also whether you improved bone density with reclast. BTW, from another perspective you are not an unlucky one. Going 3 years with no bone loss and no further meds is pretty good. It shows that the Reclast is doing it's job for you. Hopefully the Tymlos will kick in as the others have suggested.
Somewhere I have seen a chart showing typical patterns for P1NP and CTX tests at different months along in treatment. I believe it covered Tymlos also. If anyone has seen this and can provide the link it might be useful for this discussion.

@awfultruth, a typical pattern of btm changes may apply to rx-naive population only. Once a bisphosphonate was used prior to an anabolic, the normal functions or numbers of osteoclasts get altered to certain degree, hence a different response pattern of CTX. Many factors will be involved: the specific BP used, its the legnth of treatment, length of a holiday, and biological difference among population - all of which complicates the reading. But certainly esb13 could use a regular chart as a reference.

Thank you @awfultruth! I am holding on to every bit of encouragement from comments here. They mean so much.

I had 3 Reclast infusions, 2016, 2017, 2018, then a holiday, then 2 treatments, 2020-2021. Everything stayed basically steady (not statistically significant improvement) - (OP T-3 in spine, osteopenia in hip and femoral neck). My last DEXA in 2023 showed again no changes. I thought this was good news but the docs here (Boston teaching hospitals) are aggressive so I went on TYMLOS in May with the goal to get me out of OP for the spine, where Tymlos has shown the most impact. I also just started to work with a PT 2/wk who specializes in OP, on strength (weights) and resistance training (machine weights and pulley). I’ve worked out my whole life and now need to be careful about what I do and what I shouldn’t do. Clearly something in my body is not allowing new bone to be made. I’d love to know how to dig deep to find out what is preventing me from responding to these treatments. If anyone has a blood or other test that they’ve heard could reveal something, I welcome your thoughts. I have Great Bones but I think that is too much information to present to my doc without impacting the relationship. I hope to hear from my doc next week as these results came back over the weekend. I’d love to see that chart if anyone has access. I’ll try to find it online too.

Thank you so much for your positive thoughts!

@esb13 On the postive side a -3.0 is not that bad. Not great but still not that bad. I would want to improve it and I wouldn't consider it aggressive to try to improve it. Just normal common sense I'd say. As for working out, that is great that you are doing that. The exercises that have the most evidence for building bone behind them are the squat, deadlift, overhead press and jump drop. That's because of Belinda Beck's LIFTMOR and subsequent studies. That's what they used and they got the bone density improvements.
As for what else may be going on, well, that's a huge topic. I read Lani Simpson's book, and had consults with her and I read McKormick's Great Bones book. I never figured out what's wrong from all the blood tests. I could not stop losing bones with natural means but I have improved greatly by adding Evenity to all the exercise and calcium and and and ...
That said I'm still glad I did the extra testing.
Hopefully you will get the improvement you want on Tymlos.

Update for OP friends! Thank you all
so much for your kindness and support. I heard from my endo today. Her quote: “I am not worried”
(About P1NP only rising 2 points to 84). She went on to explain the many reasons why P1NP is not reliable (in fact I had eaten and long term
biotin taker which alters results) and why she does not usually get the test on her patients. I had asked for the pre test and again at 3 months based on what I’d learn from this forum and Great Bones and she graciously accommodated my request. She firmly believes the only measure of success (or failure) is a DEXA after one year on treatment. So while still discouraged by the low increase, I have some little possible hope there may be improvement. I will
continue nightly shots, intense OP specialized resistance and weight training along with focused nutrition and a positive attitude. I will also be sure possible inhibitors such as parathyroidism is ruled out. In May, 2025 I’ll have my DEXA. I’ve got to let go until then. Truthfully, the hardest part of all this is the mental toll of uncertainty, diminished self-esteem, disconnect between my active, healthy self and reality of this disease, and the hope:fear cycles. I think a good mental health professional will be as important for me going forward as my endo.
Thanks everyone!!!

Hello, I am a 48 year old male with severe osteoporosis of the spine discovered when fractures appeared in 4 vertebrae. I've been taking tymlos for a month and am taking calcium and vitamin D. I've ordered the good bones book. My hematologist doesn't think its cancer and endocrinologist doesn't think it's my parathyroid. Any thoughts or tips would be appreciated as this is new to me.