← Return to Mixed results 1 year after Forteo: What are your thoughts?

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@loriesco

thank you that is wonderful news. The CTX , along with the first P1NP of 49, was 322. Here's another mixed misunderstanding for me. Google says: "Beta-crosslaps test results are normal when less than 300 pg/ml. Above 300 pg/ml indicates increased bone resorption. In this case, the patient may have osteoporosis, Paget's disease, hyperthyroidism, and hyperparathyroidism."
So - do you understand why I am frustrated and anxious? My score is higher than 300, but that is supposed to be GOOD in the first part of the quote. Then, (like the P1NP) it goes on to say that it means negative stuff - osteoporosis and disease. Why can't people write in simple language. It should be qualified with "if you are on bone stimulating medications the response should be taken as an indicator that medicines are positively working in comparison to those who AREN'T taking them, which indicates an underlying concern.
Shouldn't I have had a second CTX at 3 months like the P1NP?!
The Reclast was done Aug. 2024. The Tymlos started mid March but I had such bad reactions I skipped the following month. The P1NP/CTX mid June and now the P1NP. Let me know if I should ask for a CTX to compare? thank you!!!

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Replies to "thank you that is wonderful news. The CTX , along with the first P1NP of 49,..."

@loriesco you are fortunate to do these tests during the time when Tymlos is active! From what I have read ("Great Bones") a rise in P1NP means Tymlos is working well but check with a doc.

We look forward to hearing your DEXA results! Are you tolerating the Tymlos well now? Fingers crossed for you!

ps I had bone markers at 18 months which were pretty useless 🙂 The P1NP then showed Tymlos wasn't doing much anymore but I stayed on for maintenance while deciding next steps. DEXA at 18 months showed 20% gain in spine and 9% gain in hip.

@loriesco I'm afraid I don't understand your first confusion. "Beta-crosslaps test results are normal when less than 300 pg/ml. Above 300 pg/ml indicates increased bone resorption. In this case, the patient may have osteoporosis, Paget's disease, hyperthyroidism, and hyperparathyroidism."
So if yours is 322 then it is outside of the most desired range and maybe indicates too much bone resorption (bone tearing down). So I read it as not great all the way thru.

Remember that with bone markers and with DXA scores it's best to observe trends. Ranges are of course important but following trends helps you to know whether results are likely accurate and how you are responding to whatever you are trying to do to help.

If your CTX of 322 was one year after a Reclast infusion you might guess that you need another infusion (or a different treatment). But what would be ideal would be to have CTX scores at baseline with Reclast and then at intervals. That way you could consider another infusion when you need it rather than when some abstract one size fits all schedule. I'm not suggesting you invest in time travel and redo all this, just pointing it out to help going forward. Though I do wish time travel was an option here.

Here's some notes I took from Lani Simpson that give an idea of this: "For Reclast judge when to repeat by ctx. If around 200 do not repeat, at 250 or 275 maybe repeat. "
This is assuming that it went down lower than 250 or so after the previous Reclast shot.
BTW some folks keep low CTX scores for 2 years or more and would quite likely not need another Reclast infusion until the CTX did rise to those levels.
I know you are past Reclast and into Evenity - I'm just putting this in to show how we all need to think about this (since many of our doctors are not thinking like this).

For P1NP my doc was delighted that my score nearly doubled from baseline to one month after my first Evenity shots. Unfortunately I don't have other markers and I'm almost done with Evenity. I'm getting my DXA two months early in order to help me figure out what to do next. Have to pay for it myself but it's no easy matter if you wait until 30 days after your last Evenity shot to get a DXA and then you have to immediately decide what to do next and get the doc to agree, and get it approved with insurance and get all the paperwork done etc. So I'm going to pay and hopefully have a smoother transition to the next med. It took me 5 months to get Evenity from the time I got the doc to agree to it. Hopefully I will have made good gains.

Hi @loriesco could you clarify some timelines when you get a chance please?

Reclast infusion was in August 2023?
Your p1np 49 and ctx 322 was your 'baseline' right before the start of tymlos in mid March 2024?
Your p1np 90 was in mid June 2024, 3 month after the start of tymlos? Did you get CTX tested at 3 mo after tymlos?

Thank a lot!