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 lurawilson @lurawilson

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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@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.

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Profile picture for lurawilson @lurawilson

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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@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

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Profile picture for lurawilson @lurawilson

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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@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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Profile picture for mayblin @mayblin

@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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@mayblin
I started HRT and Tymlos at the same time. I may have started HRT just a couple weeks before Tymlos but definitely not before my first bone markers were done in May 2025

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Profile picture for lurawilson @lurawilson

@mayblin
I started HRT and Tymlos at the same time. I may have started HRT just a couple weeks before Tymlos but definitely not before my first bone markers were done in May 2025

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@lurawilson, thanks for sharing this info. I’ve always wondered about using HRT along with a PTH analog. There was a clinical study for teriparatide combined with HRT that showed a positive outcome, though 40mcg teriparatide - doubled the standard dose 20mcg found in Forteo - was used in the study.

Occasionally we hear anecdotal accounts of using the combo with good bmd gains, but your bone markers are offering a rare look into this less-studied combination. To me, even though the two agents involved here may have a 'tug of war' with opposing effects, your 3-mo readings were clearly favorable, with the P1NP percent-increase outpacing CTX. That initial lead might just be enough to result in a positive bmd outcome. Fingers crossed!

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Profile picture for mayblin @mayblin

@lurawilson, thanks for sharing this info. I’ve always wondered about using HRT along with a PTH analog. There was a clinical study for teriparatide combined with HRT that showed a positive outcome, though 40mcg teriparatide - doubled the standard dose 20mcg found in Forteo - was used in the study.

Occasionally we hear anecdotal accounts of using the combo with good bmd gains, but your bone markers are offering a rare look into this less-studied combination. To me, even though the two agents involved here may have a 'tug of war' with opposing effects, your 3-mo readings were clearly favorable, with the P1NP percent-increase outpacing CTX. That initial lead might just be enough to result in a positive bmd outcome. Fingers crossed!

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@mayblin
I sure hope so! I don’t like taking all the supplements and drugs but I’m willing if I have stable or good results. I will update after my June DEXA and hopefully bone markers again.

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Profile picture for magicwoo @magicwoo

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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@magicwoo Tymlos is an anabolic bone building agent that is not known to cause osteonecrosis of the jaw. I have implants and was very clear about that when I was researching my options. I also ran it past my very knowledgeable oral surgeon who gave Tymlos the thumbs up. As for side effects...most of us on Tymlos experience them in varying degrees early on in the treatment but most of us stop having those side effects after our body adjusts in a few weeks. I had bone pain in my arms but I also have carpal tunnel and the meds did wake it up somewhat. Also mild headaches. After 2-3 weeks, the side effects abated. Now in my 8th month and no side effects for quite some time. I only took 70 mcg for most of that period as I am 109 lbs and was hesitant to take the full dose. In the 4th month my P1NP rose to 98. Happy with that number and I have actually bumped up to full dose after learning my severe osteoporosis resulted in a pre-Tymlos neck fracture that needs surgery. Can't use surgical pins and hardware in my neck without better bone quality, so I am grateful for Tymlos. As for the co-pay, there may be some patient assist programs available thru the manufacturer, Radius. It's a big ticket, for sure. For some people, Medicare is covering it after the annual co-pay of $2,100. Private insurance is probably less generous.

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Profile picture for lurawilson @lurawilson

@mayblin
I started HRT and Tymlos at the same time. I may have started HRT just a couple weeks before Tymlos but definitely not before my first bone markers were done in May 2025

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@lurawilson I am 77 years of age and my doctors are negative on starting HRT after more than 20 years in menopause. May I ask about age when you began HRT?

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Profile picture for willowmena @willowmena

@lurawilson I am 77 years of age and my doctors are negative on starting HRT after more than 20 years in menopause. May I ask about age when you began HRT?

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@willowmena I was 66. When I have my dexa in june I will have been on HRT’s for 1 year so I’m very curious to see my results.

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Profile picture for willowmena @willowmena

@magicwoo Tymlos is an anabolic bone building agent that is not known to cause osteonecrosis of the jaw. I have implants and was very clear about that when I was researching my options. I also ran it past my very knowledgeable oral surgeon who gave Tymlos the thumbs up. As for side effects...most of us on Tymlos experience them in varying degrees early on in the treatment but most of us stop having those side effects after our body adjusts in a few weeks. I had bone pain in my arms but I also have carpal tunnel and the meds did wake it up somewhat. Also mild headaches. After 2-3 weeks, the side effects abated. Now in my 8th month and no side effects for quite some time. I only took 70 mcg for most of that period as I am 109 lbs and was hesitant to take the full dose. In the 4th month my P1NP rose to 98. Happy with that number and I have actually bumped up to full dose after learning my severe osteoporosis resulted in a pre-Tymlos neck fracture that needs surgery. Can't use surgical pins and hardware in my neck without better bone quality, so I am grateful for Tymlos. As for the co-pay, there may be some patient assist programs available thru the manufacturer, Radius. It's a big ticket, for sure. For some people, Medicare is covering it after the annual co-pay of $2,100. Private insurance is probably less generous.

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@willowmena Thankyou for the detailed and encouraging response!
I have another month until my virtual with endocrinologist, and will read more about Tymlos!

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