CTX Testing Question

All,

Update: Last night, some kind little fairy posted my CTX results to my online portal. Thanks to everyone who commented and provided information about the lab - it took, I think, about five days to get the results.

Although the number, at first blush, looks good, the information provided on the portal doesn’t really cite the acceptable numbers/range for post-menopausal women. However, I found a few websites that state that the range for PM women should be between 104-1008 pg/mL. From that intel, I can gather that my CTX looks pretty good at 298. Of course, it’s probably affected due to Tymlos and just completing Evenity treatment. I did not have a P1NP . . .

Wishing everyone good numbers and great health! Venus and Mars are alright tonight. Cheers!

CTX is:
COLLAGEN CROSS-LINKED N-TE

P1NP is:
PROCOLLAGEN TYPE I INTACT N TERMINAL PROPEPTIDE

Howdy again, All!

Need an additional assist . . .

As I’ve already completed my Evenity, had a DEXA with great results, and am happy with the CTX. Should I be worried about a P1NP? It looks like that testing is done prior to the administration of bone-building drugs to show how one is reacting to the drugs. Would the CTX be sufficient for me after the fact and as a baseline for the “anti-resorption portion of our program”?

Thanks, everyone! Your support here has helped me in so many ways!

Cheers!

@beanieone I was told by McCormick and doctors that at the end of Evenity only CTX is relevant. McCormick says CTX should not be too low (under 100?) but my endos don't seem concerned about this. Are you doing Reclast or Fosamax or???? Congrats on gains!

Thanks @windyshores, I kind of figured as much about the CTX, etc.

Both docs who gave opinions on post-Evenity/Tymlos thought Prolia was the preferred therapy as I’ve had more than my share of lifetime Reclast infusions. I pretty much refused Prolia because I’m only 69 (sounds funny to say I’m “only” 69) and have had great results with Reclast in the past.

The second doc said he could agree with my decision as long as everything was in order - as spontaneous femur fractures can be an adverse effect of Reclast (over)usage, he ordered baseline x-rays of both femurs to monitor and make sure there are not current problems.

Thanks for your “congrats” on my gains; hopefully I can keep them for years to come!

Cheers!

My orthopedist told me that the CTX should top out at 635 if that helps you at all.

@beanieone your doctors know you and others one this forum have had good improvements with Prolia. My doctors are leery of the rebound . I don't know if any of the doctors know about the cumulative effect of lots of Reclast followed by more Reclast vs lots of Reclast followed by Prolia, since both are ant-resorptive. It would help us all to read what your doctors say about this!

Both my previous and current doc felt that Prolia was the first line of defense in the OP battle after Tymlos and Evenity @windyshores. I don’t like the idea that Prolia only stunts the growth of osteoclasts and stopping the drug causes those mad little buggers to come roaring back in large fashion and breaking down bone at an even faster rate. That and the idea that I’ll need to have the meds every six months f-o-r-e-v-e-r (or until another “wonder drug” comes along”) was making me unhappy. By the way, my previous doc pretty much told me I’d be taking Prolia, or maybe Reclast . . . without offering any explanation as to the what’s, why’s and wherfore’s.

I finally found a doc who takes my opinion into consideration and that’s a win for me. He listened to my Prolia objections carefully, did his due diligence - spoke to colleagues, lab work, x-rays . . . and based on every bit of knowledge he can summon, including my past reactions to Reclast, agreed to one (or possibly two) infusions to see how things go; I had the last infusion 2021 so I’ve had a drug holiday of about 3-1/2 years.

Let’s face it, we are in uncharted territory here friends, trying to navigate with a broken compass to get safely to the leeward side of OP.

Have a great week, y’all. Cheers!

@beanieone so just to be clear, you did Reclast infusions and then did a drug holiday for 3 1/2 years? How many infusions did you do? I am asking because I did the same meds you did and have done one partial infusion of Reclast and wonder what the future holds.

My back hurts a lot at this moment from all my spinal fractures and I don't want any more!

I feel like we are flying a plane in the dark without an instrument panel, and so are the doctors, about long term plans for osteoporosis.

I read that they originally thought Fosamax was the life long wonder drug until people started breaking their femurs. I also remember reading and being told (even by more alternative sources) that Prolia was the new miracle drug, then there were issues with rebound. Now we have Evenity and it is scary in a lot of ways, since it has been around since 2019. Videos and books cover a few years of treatment but what about the next 20 years? I respect my doctor for saying "there is still so much we don't know." It's good we have doctors we trust.

Hi @windyshores

I did several Reclast infusions as part of early treatment beginning in 2011 through 2014 or 2015 (records aren’t clear, wait, what!?). After a five/six year holiday, I had two more infusions 2020 and 2021, all without incident. The doc now says that my infusion will be given over a span of about an hour and I am willing to drive over 150 miles round trip to make sure I have the best experience possible.

I’ve had four total compression frax - L1, L3, L4 and T12. I knew about the first three, although I only had severe pain with the first . . . and I don’t know which one was first. After the T12, my doc prescribed Tymlos which I tried for about 8-1/2 months with devastating consequences. Next stop: Evenity which I just finished at the end of June. I am currently waiting for the infusion team to set a date/time for the Reclast infusion.

You are correct about flying a plane in the dark!!! Dangerous situation, no good flight plan. 😳 Quite honestly, Prolia scares the bejeepers out of me; it holds OP at bay but it can come roaring back with a vengeance if meds are discontinued.

I’m sorry you’re having so much trouble from your frax - they can be pretty debilitating. Unfortunately, it’s difficult to tell whether our aches and pains are the result of injury or our meds. Best wishes to you, windy!

Cheers!