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How long did your doc have you on Tymlos?
If you were on Tymlos, how long were you on it? My doc says she keeps most patients at the full two years, even if there's significant density improvement - if any score is still in osteoporosis range.
But I'm wondering if other doctors feel it's more prudent to save 6-12 months usage as a possible "refresher" in the future, if needed, in case density drops again a decade or so down the road - vs using up the whole 2 allowable 2 years now - then having nothing but bisphosphonates in the toolbox - particularly if patients are on the younger side - '50s/early /60s
Thoughts?
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IN my humble understadning of BM, it is important to consider the realtionship or porportion of builging markers vs dismantling markers. A P1NP for one person of 90 may be fine compared to their CTX. However for another it may be too high. There is an ideal balance and we are all trying to resestalish this healthly coupling of building vs dismantling.
When on medications, we may want the result to be sequed toward building and not fall too far with the dismantling markers.
THerefore it is not possible to comment one number. THat said I have nover heard of a P1NP in the 300. Perhaps have a redo test to see if it is accurate. Remember the timing of the test is imprtant and there are supplements not to take to make sure the test is accurate.
My best to you, May your bones heal and grow stronger each day,
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1 ReactionI’ve not heard of a P1NP being that high either, but then, I’ve just really started researching bone markers and it’s just very confusing. My P1NP is 74 and CTX is 420. I see my new rheumatologist in a week, who ordered the tests so I will confer with her regarding my test results.
My P1NP was 78 on 20 mcg of Tymlos. Later, it was 190 on 40 mcg of Tymlos, just recently it was 310 still on 40mcg of Tymlos. My CTX has been at 1400 since I have been on 40mcg. Tymlos increases both P1NP and CTX. My endo wants to lower CTX, so has prescribed Evista. He first wanted to put me on Fosomax, but I can't take that due to stomach issues. I wanted Estrogen, but he wouldn't give it to me, because I am 20 years past menopause. So of I take Evista, I will be doing a combination of Tymlos and Evista.
What is PINP?,,,,, I am so struggling with Tymlos. I stop for a week then start again but I never did 20 mcg
Are you saying that you had some results just doing 20?
I also heard you could be on Tymlos for longer than two years
P1NP is a blood test that shows osteobasts which build bone. I don't know if I had results from 20 mcg because I never had P1NP tested before starting Tymlos. How much Tymlos are you taking?
I am trying to learn about these bone turnover markers in blood tests. I see a "C-Telopeptide, Serum" (up to 778 from 590 three months ago), "N-Telopeptide, Urine" (which gives me a NTx of 58, too high), a "Propeptide Type I Collagen" (up to 220 from 191 three months ago). My doctor did these tests, but all he told me was that my Vitamin D is too low, even though the report says the PT1C is too high. Can someone explain these to me? I am postmenopausal, going on 15 years now.
I was completely exhausted and weak on TYMLOS after 6 months. I cut back 5 days ago, as someone here suggested, rather than go cold turkey, as my doctor suggested. I feel so much better! So, what happens on the 50 dose rather than 80 rather? Do you stay on it longer, or do you have to work back to 80?
Thanks!
@susyt you can make progress on 50mcg but 60 is better if you can manage. Give yourself time to figure out what you can . If 50 is the limit my doc was happy with that.
Tymlos needs a lot of D3. Can you do a megadose of 10,000 units to get it up? As I wrote before my D3 stayed around 50 with 3,000 units a day but I started at 50.
Yes, I think I need more than 3000 units a day of D3. My doctor only said 2000! That's so little, when I am so low.
You seem to know a lot. Can you explain these tests that are specifically for osteoporosis treatment monitoring? Thanks!
I did 3,000 units starting at a D3 level of 50. I don't know how low you are but if in the teens or low 20's you probably need more than 3,000. I know the doctor gave my daughter 10,000 units when her level was in the teens, and she was not on Tymlos of course (teenager then).
My doctor does not do bone marker tests and says they do not tell the whole story of what is going on in bone. McCormick, the author of "Great Bones" suggests that treatment be guided by them. There is disagreement on this as you can see. The P1NP measures bone growth and the CTX measures bone resorption. Ideally you would have higher P1NP and lower CTX but most treatment protocols right now don't achieve that- Evenity might come close, yet to be seen. Tymlos and Forteo raise both and I believe Prolia, Fosamax, Reclast lower both. Dr. Ben Leder has a good video on YouTube entitled "Combining and Sequential Approaches to Osteoporosis if you are interested.