P1NP number on Tymlos

Posted by marymj7 @marymj7, Jan 1, 2024

After 3 months on Tymlos, my P1NP bone marker has increased by 50% to 109. I was initially excited, but am wondering if this is excessive. Anyone else had numbers like this?

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Profile picture for yogagirl57 @yogagirl57

Hello fellow Tymlos takers! I have been on Tymlos for 3 months, and I am also trying to figure out why my CTX went from 196 last year to 895.8 this month of April. My P1NP is 175. Of course I contacted my Endo and she was not alarmed even a little! Can you believe this? Would love to know your thoughts……

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@yogagirl57, were you on an antiresorptive before Tymlos.

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Profile picture for gently @gently

@yogagirl57, were you on an antiresorptive before Tymlos.

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@gently No I wasn’t on anything before.

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Profile picture for kfhoz @kfhoz

@yogagirl57 See the below video by Dr. Doug Lucas. I went through it slowly, with the transcript enabled, in order to try to understand my CTX and P1NP. From my interpretation, what you may have is an indication of good bone turnover in the BUILDING direction.

After you watch this and do your calculations, please let us know what you think. I would like to know whether the number 195 means anything to you personally then, as a check on what I understood from this presentation. I plan to write up my own experience with CTX & P1NP tests soon.

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@kfhoz thank you. Look forward to watching.

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Profile picture for yogagirl57 @yogagirl57

@gently No I wasn’t on anything before.

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@yogagirl57
CTX rises on Tymlos, your rate is surprising. Before worry, though, consider lab or transcription error. CTX has risen as high as 49% in studies where exercise is performed prior to the test. And CTX levels change throughout the day.
What was your increase in P1NP.
Lastly, fracture can increase CTX by 69%, but don't even think about that, unless you have new pain, until you repeat the CTX marker.
I can never wait for the next doctor appointment and frequent Jason Health https://www.jasonhealth.com/
qt17406 Collagen Type I C-Telopeptide (CTx) $50.00
Lab Collection Fee $18.00
Grand Total $68.00
Your doctor has a full view of your medical situation and isn't concerned, which should be relaxing, but can put a person on greater alert. She is prescribing the best medication and so deserves trust.
I don't even have a basic medical background and am hoping you went to the gym before your draw.
,

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Profile picture for gently @gently

@yogagirl57
CTX rises on Tymlos, your rate is surprising. Before worry, though, consider lab or transcription error. CTX has risen as high as 49% in studies where exercise is performed prior to the test. And CTX levels change throughout the day.
What was your increase in P1NP.
Lastly, fracture can increase CTX by 69%, but don't even think about that, unless you have new pain, until you repeat the CTX marker.
I can never wait for the next doctor appointment and frequent Jason Health https://www.jasonhealth.com/
qt17406 Collagen Type I C-Telopeptide (CTx) $50.00
Lab Collection Fee $18.00
Grand Total $68.00
Your doctor has a full view of your medical situation and isn't concerned, which should be relaxing, but can put a person on greater alert. She is prescribing the best medication and so deserves trust.
I don't even have a basic medical background and am hoping you went to the gym before your draw.
,

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@gently I can’t remember now if I went to the gym prior, and had no idea that I shouldn’t exercise prior to the test. I am very active and do cardio and weights alternating days so I’m sure that I did one or the other; but it would have been the day prior since I had the blood test early in the morning. How long should you hold off exercising prior to the test? I guess I’ll have to wait for the results for the next test in 3 months. I just thought that increase was crazy ; but, again. , my Endo seemed very unconcerned. I do not have a baseline on P1NP . That was the first time I had been tested.

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yogagirl157, Unrelated studies indicate that the usually persists for 4 hours. Test before morning exercise, but not before 8am. Weights and cardio are know to raise CTX. That's a relief.

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Profile picture for gently @gently

yogagirl157, Unrelated studies indicate that the usually persists for 4 hours. Test before morning exercise, but not before 8am. Weights and cardio are know to raise CTX. That's a relief.

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@gently good to know! I learn more on this blog than I do from my doctor!

Have a great day!

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Following..
I have severe osteoporosis, I have met with endocrinologist who has suggested Tymlos or Forteo.
We meet again in June. So far I have discovered that I may not be able to afford the co-pay
and I'm terrified of the side effects, especially the osteocronosis of jaw

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Profile picture for lurawilson @lurawilson

I have been on tymlos for 3 months with close to no side effects. I do my injection around 10pm right before bed. For the first month right after the injection I felt my heart rush just for about 3-5 minutes and sometimes still do. I also woke up with a dull nagging headache however that went away after about 1.5 months. So here is the current story:
My P1NP before the Tymlos was 42ug/L , after 3 months it’s 85ug/L
My CTX was 389 pg/ml, after 3 months on Tymlos it’s 485pg/ml.
At the same time I also started estradiol 1mg tablet and progesterone 100mg. I was very sensitive to the estradiol and had to reduce to half a tablet. As of yesterday I switched to the Dotti estradiol patch at 0.05 mg.
Because I started the BHRT and Tymlos at about the same time I was hoping my markers would have been better however I do see that the meds are working and my dr. and I have decided to continue this routine for at least another 10 months possibly more. My next appointment with the endocrinologist is Feb. 25, 2026 and I’ll have labs done again for that appointment. I’m scheduled for another dexa July 2026 and I sure hope I see an improvement! When I finally agreed to meds my dexa had increased in my spine by about 7%. My lumbar was -3.3 and both hips were -2.6 I had been trying to improve without meds however I was not consistent with weight/resistance exercises but I did walk at least 2 miles 5 times a week. I injured my elbow getting too exuberant with weights last spring and have not gotten back into a routine. I keep promising myself that I will start a slow weight/resistance exercise routine soon. I do still walk 2 - 4 miles 3 - 5 times a week. At this time dr. has not discussed what I will do once I complete 18-24 months of Tymlos. Maybe the BHRT is enough? I do not like what I read about reclast or fosamax however my dr. says it’s too soon to make a decision on that. He has indicated he would like meto stay on the Tymlos for the full 24 months but I’m resistant about that mostly because of the inconvenience of the daily injections and the fact that it must be refrigerated before use. It’s a pain to get the amount I need and keep it refrigerated when I travel. I usually leave the cold winters of MN for 4-6 months but since I can’t get the Tymlos filled for more than 90 days, which took me 1.5 months to get approved, I will not be able to escape the cold winter this season. I’m just lucky to currently have 3 pens to travel mid October - mid December. I also anticipate that it may be difficult this January to even get another prescription filled? I will have to search for different insurance since Ucare has discontinued their medicare advantage program. I’m hoping this will not be a problem once I get different insurance however it also took almost 2 months just to get the Tymlos approved since it was not on their formulary. Fingers crossed this will not be a problem come January on my new insurance, since I know I will need a new pen on January 9 2026 😨
I hope this information is helpful. I have gotten so much valuable information here and I hope to pass on my story to help others. It is early in my med journey but I wanted to give a shout out to those who are afraid of meds as I was and how important it is to gather information to help make a decision.

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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!

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magicwoo,
You are wise to be concerned with the side effects of osteoporosis medications.
Forteo and Tymlos are the only two osteoporosis medications that don't create the risk of osteonecrosis of the jaw or atypical femur fractures. Oppositely, Forteo is often prescribed for osteonecrosis of the jaw in attempts to resolve the issue. Dental work is safter from osteonecrosis if you happen to be on Forteo. Surgeries involving the bone or cartilage heal faster and integrate any metal sooner.
Most osteoporosis medication work by slowing the body's ability to get rid of damaged bone. The two parathyroid drugs increase the pace of removal and replacement in the normal way that our bodies replace bone.
It is estimated that we replace cortical bone completely every ten years. But the fine trabecular bone is replaced every two years to three years. We know what happens to that trabecular bones when we take a drug for a couple of years that slows that process. The bone we preserve becomes avascular, dry and brittle and maintains bone mineral density.
I like your endocrinologist's suggestion that you try one of the two best medications for osteoporosis.

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