Blood Marker Testing

Posted by babs10 @babs10, May 17 2:19pm

Hi Everyone,

I had P1NP and CTX serum tests. I expected the numbers would be wonky somehow, but both are in the normal range. Are the numbers only useful as baselines for the sake of comparison once taking medication?

Thanks.

Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.

Here is an article from Mayo Clinic on the use of blood markers for tracking the efficacy of medication for osteoporosis.

Mayo Clinic: Laboratory Testing of Bone Turnover Markers:

-- https://news.mayocliniclabs.com/2023/08/07/laboratory-testing-of-bone-turnover-markers/#:~:text=The%20most%20common%20bone%20resorption,measurable%20in%20urine%20and%20serum.

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@windyshores

I watched the whole video and was especially interested in the second half. Around the one hour mark they mention adjustable doses of Tymlos as being an advantage of that medication and that they have seen patients on 1/2 dose have robust increases in P1NP.

The discussion of hormones (testosterone) as interesting and I felt there was little bit of a put down of the one female participant (she reasonably thought Prolia may have caused the patient's atypical femur fracture after some years on a bisphosphonate as well). That option is not available to me due to past cancer. The idea that increases in muscle mass improve quality of life for someone with several vertebral fractures was relevant for me and wish I could take it!

The video contains the usual discordance of opinion on bone markers. My P1NP was pretty low after 18 months on Tymlos and some docs would continue and others wouldn't.

I have seen the small study mentioned that Evenity might be a good follow-up for Prolia. More needed because Prolia is effective, just too risky to stop.

For some of us this gets less and less complicated as we react to some drugs or develop health conditions or whatever that limit our options! I am down to Tymlos as tolerable and we'll see how I do with lower dose Reclast. My concern is whether I can do Tymlos again since on the video they say that extending Tymlos use past 2 years is unlikely because the company doesn't have the ability to do a study the way Lily did for Forteo.

Looks like I am done with choices and can only do Reclast. Not sure what happens after a year or two!

By the way I hurt my back badly last week but x-rays show no new fractures. Six or seven preexisting ones, curvature, scoliosis, arthritis, degenerative changes. Not pretty but stable thanks to Tymlos.

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Neslon Watts was the only one thinking that Tymlos would't lose the warning. That was in 9/21. The FDA removed the black box from Tymlos 5/23. It was an inherited box so many scientists assumed it would be removed.
The video was fun for the range of open speculation.

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@gently

Neslon Watts was the only one thinking that Tymlos would't lose the warning. That was in 9/21. The FDA removed the black box from Tymlos 5/23. It was an inherited box so many scientists assumed it would be removed.
The video was fun for the range of open speculation.

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@gently the two year limit was lifted for Forteo but not for Tymlos. Apparently the company does not have the funds to do the same studies that Lily did, and it would take 10-15 years. I wonder if Tymlos will be extended by some docs for people like me who cannot take anything else!

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@kristie2

I self inject my Evenity and I have a Medicare advantage plan and I very quickly get in the donut hole and I am paying $599 . A month .

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I was unaware that self injection was an option with Evenity. Your reference to the 'donut hole' suggests that your coverage is under Medicare Part D, not under Medicare Part B. Is that correct?

This would be consistent with my understanding that injections in a clinical setting are processed as a Medicare Part B benefit and self injected medications are processed under Part D.

Sorry this posting about Medicare will interfere with the flow of this thread, which is a very good discussion about interpreting biomarker results. Sorry.

However, we all search for what may be the best treatment, but if it is unaffordable what difference does it make what the best might be?

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@windyshores

@gently the two year limit was lifted for Forteo but not for Tymlos. Apparently the company does not have the funds to do the same studies that Lily did, and it would take 10-15 years. I wonder if Tymlos will be extended by some docs for people like me who cannot take anything else!

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https://www.drugdiscoverytrends.com/fda-approves-removal-of-boxed-warning-from-label-for-osteoporosis-drug-tymlos/
The endocrinologist my mom consulted before Forteo was approved twenty whatever years ago, extended her use to four years even with the black box because he was a scientist who knew about the fischer rats

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@rjd

I was unaware that self injection was an option with Evenity. Your reference to the 'donut hole' suggests that your coverage is under Medicare Part D, not under Medicare Part B. Is that correct?

This would be consistent with my understanding that injections in a clinical setting are processed as a Medicare Part B benefit and self injected medications are processed under Part D.

Sorry this posting about Medicare will interfere with the flow of this thread, which is a very good discussion about interpreting biomarker results. Sorry.

However, we all search for what may be the best treatment, but if it is unaffordable what difference does it make what the best might be?

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You are correct my coverage is under part D . My endocrinologist didn’t do that in her office and my insurance in Nevada wouldn’t cover the injection given at the infusion center .

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Thanks for your response @lynn59. I saw my endo this morning. I asked to see him instead of the nurse practitioner, because I was concerned about the results of my 24 hour urine test. It was high for calcium. I don't know if he knows much about the bone markers, but he thought they were OK. He wasn't concerned about the high calcium in my urine, saying that my kidneys were working to get rid of the extra. He still wants me on 500 mg calcium a day, but I think I will relax a little about the amount of calcium I'm getting in food. I will see a nephrologist on Saturday for his opinion.

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@gently

https://www.drugdiscoverytrends.com/fda-approves-removal-of-boxed-warning-from-label-for-osteoporosis-drug-tymlos/
The endocrinologist my mom consulted before Forteo was approved twenty whatever years ago, extended her use to four years even with the black box because he was a scientist who knew about the fischer rats

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@gently I am hoping my flexible endo will do that for me 🙂

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@drsuefowler

Thanks for your response @lynn59. I saw my endo this morning. I asked to see him instead of the nurse practitioner, because I was concerned about the results of my 24 hour urine test. It was high for calcium. I don't know if he knows much about the bone markers, but he thought they were OK. He wasn't concerned about the high calcium in my urine, saying that my kidneys were working to get rid of the extra. He still wants me on 500 mg calcium a day, but I think I will relax a little about the amount of calcium I'm getting in food. I will see a nephrologist on Saturday for his opinion.

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Interesting. I’m sorry if you already wrote this somewhere, but are you on teriparatide? I am in my second month and wondering if I should worry less about getting 1200mg of calcium through food. I’ve upped my dairy considerably and I’m noticing bloating and weight gain even though I switched to lactose free skim milk. I also eat yoghurt and more cheese than normal.

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