What was Your P1NP Increase on Tymlos at 1 Month?

Posted by CathyF31 @cathyf31, 6 days ago

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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Profile picture for michieg @michieg

Hi 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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@michieg Thank you!!

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Profile picture for CathyF31 @cathyf31

@sebutler Thank you and good luck!! Do you take K2 with your Vitamin D3?

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Hi, @cathyf31. No I just take Vitamin D3. I've been reading a bit more about K2, so am considering adding it to my diet. I do have yogurt everyday, which apparently has K2, tho I don't know how much.

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Profile picture for sebutler @sebutler

Hi, @cathyf31. No I just take Vitamin D3. I've been reading a bit more about K2, so am considering adding it to my diet. I do have yogurt everyday, which apparently has K2, tho I don't know how much.

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@sebutler I am also new to the K2 benefit of directing the calcium to bones and teeth. I sent a message to my provider about it and I'm interested to see what I'm told. I saw that Walgreens had buy one get one free, so I went ahead and bought some and we'll add it for the time being. It appears the soft gels are absorbed better, but they we're out, so I went ahead and got the capsules. I guess they may not absorb as efficiently, but I'm guessing it's better than not using it at all. I am very hesitant to ever add anything new, but there seems to be a lot of letters out there on the K2 benefit. Figured I could try it. I certainly like the idea of it directing the calcium to where it's needed and keeping it from doing damage to the cardiovascular system.

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Profile picture for CathyF31 @cathyf31

@sebutler I am also new to the K2 benefit of directing the calcium to bones and teeth. I sent a message to my provider about it and I'm interested to see what I'm told. I saw that Walgreens had buy one get one free, so I went ahead and bought some and we'll add it for the time being. It appears the soft gels are absorbed better, but they we're out, so I went ahead and got the capsules. I guess they may not absorb as efficiently, but I'm guessing it's better than not using it at all. I am very hesitant to ever add anything new, but there seems to be a lot of letters out there on the K2 benefit. Figured I could try it. I certainly like the idea of it directing the calcium to where it's needed and keeping it from doing damage to the cardiovascular system.

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@cathyf31 Sounds like you can't go wrong with a K2 supplement -- and great news re that 2-for-1 sale!! I find all this nutritional stuff so confusing!! At first I thought that spinach, like kale, would be great for bones, since it is high in calcium. But on further reading, I discovered that spinach, unlike kale, blocks the absorption of calcium! Ugh. The reason apparently is that it is high in oxalates, which bind to calcium and prevent its absorption. Go figure!! I wish I could find a good nutritionist who knows all this stuff and can advise!!

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Profile picture for sebutler @sebutler

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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@sebutler thank you very much for sharing - those are really impressive, and enviable gains!

Curious, since you were hoping for 1 year but your doctor recommended 2yr of Fosamax, are they planning to monitor CTX while you're on it? I wonder if they might use that to help guide dosing and/or duration.

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Profile picture for mayblin @mayblin

@sebutler thank you very much for sharing - those are really impressive, and enviable gains!

Curious, since you were hoping for 1 year but your doctor recommended 2yr of Fosamax, are they planning to monitor CTX while you're on it? I wonder if they might use that to help guide dosing and/or duration.

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@mayblin Yes, my endocrinologist had said she would test my CTX at one year. But I understand from a video @gently posted that it's important to get both the CTX and P1NP measured at the same time, so I will ask her about that when the time comes. The doc sort of said she would use the CTX number to guide treatment. Do you know what the numbers should be?? I know about the 3:1 ratio per Dr. Lucas (from that video). But what's a good number -- Dr. Lucas simply said the higher the ratio better to show you are building bone.

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Profile picture for kfhoz @kfhoz

@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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@kfhoz Did your insurance refuse to pay or did your doctor refuse to order them? Or something else?
Thanks for the info!

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Profile picture for sebutler @sebutler

@mayblin Yes, my endocrinologist had said she would test my CTX at one year. But I understand from a video @gently posted that it's important to get both the CTX and P1NP measured at the same time, so I will ask her about that when the time comes. The doc sort of said she would use the CTX number to guide treatment. Do you know what the numbers should be?? I know about the 3:1 ratio per Dr. Lucas (from that video). But what's a good number -- Dr. Lucas simply said the higher the ratio better to show you are building bone.

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@sebutler you have a great doctor!

My understanding of these two markers is that while the P1NP/CTX (or CTX/P1NP) ratio is a vital 'balance' check during the anabolic phase, where P1NP is the dominant driver, it’s a bit of a different story once you switch to an antiresorptive like Fosamax.

In antiresorptive phase, CTX is the dominant mover - decreasing significantly to 'lock' in gains via suppress bone turnover. Because of coupling phenomenon, P1NP will eventually follow it down after a slight lag. And because both numbers drop so significantly, we don't necessarily look for a preferential 'ratio' like we do during the building/anabolic phase.

The graphs from the TRIO study illustrates the changes in CTX and P!NP beautifully with 3 different bisphosphonates, link here (fosamax, look for the attached photos): https://connect.mayoclinic.org/comment/1425205/
I actually used this same logic during my HRT treatment; monitoring CTX was incredibly helpful for me to figure out the right dosing. From my endo and another bone specialist's view, getting CTX down to lower half of the range for healthy premenopausal women is preferred. I'd be curious to hear what your endo's preference would be.

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Profile picture for kathleenrmt @kathleenrmt

@kfhoz Did your insurance refuse to pay or did your doctor refuse to order them? Or something else?
Thanks for the info!

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@kathleenrmt My doctor was not interested in ordering the BTM tests, even though I requested them. But her disinterest may have been related to insurance. Using my pick-your-battles mindset, once someone else on this site pointed out the low cost tests from Jason Health, I decided to get my own tests.

The question for the doctors & insurance companies tends to be on how test outcomes would guide treatment. I started HRT in October and deeply thank my doctor for immediately prescribing it and starting me on the most likely dose of 0.05 mg patches. I have seen stories on here about women struggling to find a doctor willing to prescribe HRT, and doctor putting the person on a tiny micro-dose. I want to check if my 0.05 HRT + other interventions appear to be working long before my next DEXA/DXA scan.

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Profile picture for mayblin @mayblin

@sebutler you have a great doctor!

My understanding of these two markers is that while the P1NP/CTX (or CTX/P1NP) ratio is a vital 'balance' check during the anabolic phase, where P1NP is the dominant driver, it’s a bit of a different story once you switch to an antiresorptive like Fosamax.

In antiresorptive phase, CTX is the dominant mover - decreasing significantly to 'lock' in gains via suppress bone turnover. Because of coupling phenomenon, P1NP will eventually follow it down after a slight lag. And because both numbers drop so significantly, we don't necessarily look for a preferential 'ratio' like we do during the building/anabolic phase.

The graphs from the TRIO study illustrates the changes in CTX and P!NP beautifully with 3 different bisphosphonates, link here (fosamax, look for the attached photos): https://connect.mayoclinic.org/comment/1425205/
I actually used this same logic during my HRT treatment; monitoring CTX was incredibly helpful for me to figure out the right dosing. From my endo and another bone specialist's view, getting CTX down to lower half of the range for healthy premenopausal women is preferred. I'd be curious to hear what your endo's preference would be.

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@mayblin Thank you so much for this clarification -- for the article (a deep dive!) and the graphs. So if I understand correctly, P1NP is guaranteed to follow CTX down when resorption is blocked with a bisphosphonate. Hence, no need to get P1NP tested going forward. (And no need for any ratio.). You mentioned that a CTX number in the lower half of the range for healthy premenopausal women is the goal. Is that range 100-600 pg/ml? May I ask how you used this to figure out the right dosing for your HRT? eg, Did you test every six months and increase or decrease the dose depending on where you were in that range?

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