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Evenity and Bone Markers

Posted by marymj7 @marymj7, Sep 10, 2024

Can testing bone markers part way through Evenity treatment indicate whether or not it's working? My baseline numbers are what I believe Dr. McCormack would label as optimal, yet I have severe osteoporosis. CTX in the 200s. P1NP 39. I will have bone markers tested soon ahead of my fourth set of Evenity injections. Has anyone had bone markers done while on Evenity?

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Michael Lavacot | @michaellavacot | Oct 1, 2024
In reply to @kristie2 "Michael , Why may I ask are you not moving on from Prolia to Reclast ?" + (show)
@kristie2

Michael ,
Why may I ask are you not moving on from Prolia to Reclast ?

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Hi @kristie2 , I likely will move from Prolia to Reclast once I achieve my targeted T-score on Prolia. Knowing that I will have a rebound of about 1/2 of a T-score when I stop Prolia (after many years), my target for spine will be -1.5 to -1.0 before I switch.

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kristie2 | @kristie2 | Oct 1, 2024
In reply to @michaellavacot "Hi @kristie2 , I likely will move from Prolia to Reclast once I achieve my targeted..." + (show)
@michaellavacot

Hi @kristie2 , I likely will move from Prolia to Reclast once I achieve my targeted T-score on Prolia. Knowing that I will have a rebound of about 1/2 of a T-score when I stop Prolia (after many years), my target for spine will be -1.5 to -1.0 before I switch.

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That’s a great goal !

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marymj7 | @marymj7 | Oct 6, 2024
In reply to @michaellavacot "Attached are the results from another Evenity (Romosozumab) trial showing the CTX and P1NP results over..." + (show)
@michaellavacot

Attached are the results from another Evenity (Romosozumab) trial showing the CTX and P1NP results over time. I have circled the three month period. From the bars shown for each time period, you do fall within expected results. I think you just need to ride out the year and see how you do.

As for CTX falling too far, I don't think you have to worry about that. To put the numbers into perspective, I'm on Prolia and my CTX is 37. Even with Prolia, ONJ risk is very low.

My two cents, stay the course on Evenity! Good luck.

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Now I remember that you and I corresponded before I began Evenity. I, too, have high urine calcium (apparently idiopathic). If i recall, you didn’t have much gain on Evenity?

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Michael Lavacot | @michaellavacot | Oct 6, 2024
In reply to @marymj7 "Now I remember that you and I corresponded before I began Evenity. I, too, have high..." + (show)
@marymj7

Now I remember that you and I corresponded before I began Evenity. I, too, have high urine calcium (apparently idiopathic). If i recall, you didn’t have much gain on Evenity?

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Well, that's a long story. As it turns out, I actually had pretty good response on Evenity. They messed up my first DXA scan and scanned L2-L5 instead of L1-L4. All said, I gained about 11% BMD in the spine and about 5% in the hip. Since I lose both calcium and phosphorus in my urine, I supplement both to try to keep serum levels where they need to be. I'm still working on the root cause and it seems to be a kidney thing. My 1,25(OH)2 vitamin D is also too high as well as my FGF23. It's pretty complicated. 🙂

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babbsjoy | @babbsjoy | 19 hours ago
In reply to @windyshores "@marymj7 I had bone markers twice trying to catch bone growth, without success. P1NP may go..." + (show)
@windyshores

@marymj7 I had bone markers twice trying to catch bone growth, without success. P1NP may go up the first week or two. I got tested at the end of the first month and no change in P1NP, nor was there change in the middle of the third month. I have no idea what that means but doctor thinks I missed the best time to test: probably at the end of the 2nd week.

Your P1NP is lower than mine (my baseline is in the 50's and every test, whether at 18 months with Tymlos or with Evenity, it remains there). Would love to know what you get now. Evenity may be mostly anti-resorptive at this point, according to my doc.

I have not found bone markers to be helpful but it is all in the timing.

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@windyshores

You have been so informative in so many ways! My current situation is that I have been on Tymlos for about five months. My current pen runs out in days. Our insurance company (commercial) changed with the new year, and the new company is denying the necessity of Tymlos, wanting me to use a bisphosonate. Conversations are taking place to try to get them to reconsider (long process and many layers of people). Also, the doctor I was seeing in the practice left for another part of the country, and I have a doc that is new-to-me in the practice (and she is an osteoporosis-concentrated doc). She wants me to see her in mid Feb (first available I guess) and do labs prior “to see if Tymlos is even working”. Labs include bone markers, which I assume is what she will focus on. I did have all this done prior to beginning Tymlos. She declines giving me one of their sample pens so I will not have to discontinue treatment. So it appears she too is questioning my need for Tymlos……(or they want to save them for people in greater need and risk, which I understand).

I have scheduled my labs asap, so if being off the med adversely affects the markers. But is it reasonable to hinge my treatment plan on bone markers five months in? (I know you are not a doctor, and I will not quote you or in any way consider you responsible for anything. I just am wondering how reasonable this is and if I should question it). I am 62, in great health aside from this. Spine dexa the worst at -3.6, but no fractures. I do have probs with acid reflux, and that is why my PCP said I needed to see an osteo doc, as she can’t prescribe other than old school stuff. Thx to you and anyone else who can comment.

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