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.

@gently

Babs, I'm certain that the disability is in my expression. I hope you don't give up until you're thinking--Why didn't she just say that to begin with.

If your bone density were that of the (non existent) 30 year old that our densities are compared to 324pg/mL with in the range of 104- 1008pg/mL is low normal 60mcg/L P1NP is mid normal in range of 16 to 96 mcg/L So your rebuilding is keeping up with the breaking down. You have effective remodeling.

The markers say that you are maintaining the bone density you now have. If your bone density is low you are maintaining that low bone density.

If your CTX were 1008pg/mL and your P1NP 16mcg/L, you'd be losing bone density according to the bone markers.
The way medical practitioners use the markers is to determine patient compliance with taking their medications and to determine if a medication is working. The markers aren't used to diagnose osteoporosis. They have been used to determine which medication should be prescribed. After Forteo was approved it was thought that the bisphosphonates were best if CTX was high. Now thinking is shifting toward anabolics first.
My private opinion is that you can't regain very much bone loss without pharmaceuticals. There are wonderful ways to try and some people seem to be successful. It is a slower process than meds and the risk of a meanwhile fracture is why many of us take medications.
"Vast understanding" gave me a good laugh. Whatever my understanding, I have even less experience. It's best to question anything I write.

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@gently, "The markers say that you are maintaining the bone density you now have. If your bone density is low you are maintaining that low bone density" helped so much.

I have discordance btw my hip at -3.5 and my osteopenic spine and the hip is a challenge to target. My impression is it's hard even with meds (recently watched a presentation where the MDs said teriparatide can even make it worse) so I'm in a quandry. The whole purpose of meds is not to fracture so I'm sure I'll end up taking something or other. Tymlos is like Forteo and I don't think I can take Evenity. Sometimes, I want to curl up into a ball forever.

Thank you again for your help. < 3

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@babs10

@gently, "The markers say that you are maintaining the bone density you now have. If your bone density is low you are maintaining that low bone density" helped so much.

I have discordance btw my hip at -3.5 and my osteopenic spine and the hip is a challenge to target. My impression is it's hard even with meds (recently watched a presentation where the MDs said teriparatide can even make it worse) so I'm in a quandry. The whole purpose of meds is not to fracture so I'm sure I'll end up taking something or other. Tymlos is like Forteo and I don't think I can take Evenity. Sometimes, I want to curl up into a ball forever.

Thank you again for your help. < 3

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@babs10 I have been told Tymlos is better than Forteo in terms of bone density gain. And I was also told Evenity could help hip. (My hip gained 9% on Tymlos, going from -3.3 to -2.9. Spine gained 20%. Femur neck is still a problem, went from -4.1 to -3.6). I followed with 4 months of Evenity to target the hip and femur neck but haven't had a DEXA.

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@windyshores, Relatively speaking, I'm more attracted to Tymlos than anything else b/c of the ability to adjust the dose. I've had 2 MDs say I should take Evenity, but I am treated with blood pressure meds (and you may or may not remember that in March, I fainted and hit my head in the bathroom due to a virus and now my BP fluctuates like crazy - high highs and low lows - it can't be good for my blood vessels). I was also diagnosed with a blood clot in my 20s so it doesn't seem like Evenity would be a good choice to me, but what do I know?

I want to skip this journey all together. I don't want to be on meds for the rest of my life, doing this balancing act with all of this conflicting information about how to proceed. I think I'm having a discouraged weekend.

I'm glad you have done so well, Windy (is it ok if I call you that? 🙂 )

I trust you and many others on this forum more than I trust the MDs I have seen. I'd be lost without you and it.

xo

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@babs10

@gently, "The markers say that you are maintaining the bone density you now have. If your bone density is low you are maintaining that low bone density" helped so much.

I have discordance btw my hip at -3.5 and my osteopenic spine and the hip is a challenge to target. My impression is it's hard even with meds (recently watched a presentation where the MDs said teriparatide can even make it worse) so I'm in a quandry. The whole purpose of meds is not to fracture so I'm sure I'll end up taking something or other. Tymlos is like Forteo and I don't think I can take Evenity. Sometimes, I want to curl up into a ball forever.

Thank you again for your help. < 3

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Babs10, I know that feeling. It's a warning that you are getting ready to roll.

I'm familiar with the idea that Tymlos is more effective at raising dxa bone density numbers for both hip and femur than Forteo. Greater porosity with Forteo may reflect greater resilience. Lower density in cortical bone can yield on impact rather than break.
I'm curious about the concept that teripartide can make osteoporosis worse. I think the MDs in the video (I haven't seen) meant geater porosity so less density with Forteo compared to Tymlos. Density and strength are not the same measurement.
Patients can lose bone density while on Forteo because of unresolved cause ( like hyperparathyroidism), when medical providers fail to screen for secondary causes of osteoporosis.

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@gently

Babs10, I know that feeling. It's a warning that you are getting ready to roll.

I'm familiar with the idea that Tymlos is more effective at raising dxa bone density numbers for both hip and femur than Forteo. Greater porosity with Forteo may reflect greater resilience. Lower density in cortical bone can yield on impact rather than break.
I'm curious about the concept that teripartide can make osteoporosis worse. I think the MDs in the video (I haven't seen) meant geater porosity so less density with Forteo compared to Tymlos. Density and strength are not the same measurement.
Patients can lose bone density while on Forteo because of unresolved cause ( like hyperparathyroidism), when medical providers fail to screen for secondary causes of osteoporosis.

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@gently has added this interesting idea on porosity vs density, flexibility vs strength, on a few threads and I am intrigued.

Personally, I have found that as my DEXA improves, I feel stiffer: reaching and lifting, for instance, cause a different kind of pain. Of course I already have several fractures and wonder what consequences there might be after making those compressed vertebrae, more dense. More stable but with less give?

Anyway thank you @ gently for this interesting addition to discussion which I intend to discuss with my doctor.

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@babs10

@rjd, When teriparatide was prescribed, the pharmacy called me to make sure I understood the cost. I didn't!!! so I called Medicare and was referred to my supplemental. My supplemental referred me to my Part D prescription plan and I was told $1927/month was the copay. I am not eligible for any financial assistance. I saw a second MD who prescribed Tymlos which is even more expensive and not included in my Part D formulary. I saw a third MD and he prescribed Evenity. I haven't made any decisions about medication and was surprised that he contacted the infusion center without further conversation - I was waiting for the results of the CTX and P1NP. I called the infusion center on Friday and they told me they couldn't tell me if Evenity was covered unless I had an appointment so I made an appointment and hope to hear back from them this week. I don't think I can take Evenity due to a blood clot DX in my 20s, but wanted to play this out pending further conversation with the doctor.

I forgot that Evenity is different (thanks @susanfalcon52) b/c it is given at an infusion center so I'm sure I'm wrong about that one and have to wonder why the my Part D prescription plan and the infusion center didn't tell me that. Based on what @windyshores wrote, I will call Medicare and double check on Tymlos. Nothing about this diagnosis is easy.

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It is my understanding that many folks receive an Evenity injection in their doctor's office, not at an infusion center. I had one of my Prolia shots at an infusion center and the other one in my doctor's office.

I think the difference between processing and paying for Forteo/Tymlos and Evenity likely hinges on whether a medication is self-administered at home or administered in a clinical setting.

If at home, then you should look to your Medicare Part D plan.....what is the deductible and copay, is the drug on the formulary (apparently Tymlos is not on your Plan's formulary) and if it is not on the formulary, whether you should ask for an exception. Your doctor will need to be involved in trying to get an exception.

If the medication is given in a clinical setting, then the Medicare B process is used. This means Medicare usually pays 80% and you pay 20%. Then you look to your Medicare Supplement Plan or your Medicare Advantage plan for applicable deductibles and copays.

It seems most supplement plans pick up your entire share of the cost of Evenity because it is a Medicare B medication. The supplement plans do not cover Medicare Part D drugs for which you have a separate Plan.

I am hoping that if my understanding about Medicare B drugs and Medicare D drugs is incorrect, someone will set me straight.

Welcome to the Wonderful World of Medicare.

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@gently

Babs10, I know that feeling. It's a warning that you are getting ready to roll.

I'm familiar with the idea that Tymlos is more effective at raising dxa bone density numbers for both hip and femur than Forteo. Greater porosity with Forteo may reflect greater resilience. Lower density in cortical bone can yield on impact rather than break.
I'm curious about the concept that teripartide can make osteoporosis worse. I think the MDs in the video (I haven't seen) meant geater porosity so less density with Forteo compared to Tymlos. Density and strength are not the same measurement.
Patients can lose bone density while on Forteo because of unresolved cause ( like hyperparathyroidism), when medical providers fail to screen for secondary causes of osteoporosis.

Jump to this post

@gently, I can find the video when I have more time. If you are interested, I can post it. Your questions and comments are so helpful.

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@rjd

It is my understanding that many folks receive an Evenity injection in their doctor's office, not at an infusion center. I had one of my Prolia shots at an infusion center and the other one in my doctor's office.

I think the difference between processing and paying for Forteo/Tymlos and Evenity likely hinges on whether a medication is self-administered at home or administered in a clinical setting.

If at home, then you should look to your Medicare Part D plan.....what is the deductible and copay, is the drug on the formulary (apparently Tymlos is not on your Plan's formulary) and if it is not on the formulary, whether you should ask for an exception. Your doctor will need to be involved in trying to get an exception.

If the medication is given in a clinical setting, then the Medicare B process is used. This means Medicare usually pays 80% and you pay 20%. Then you look to your Medicare Supplement Plan or your Medicare Advantage plan for applicable deductibles and copays.

It seems most supplement plans pick up your entire share of the cost of Evenity because it is a Medicare B medication. The supplement plans do not cover Medicare Part D drugs for which you have a separate Plan.

I am hoping that if my understanding about Medicare B drugs and Medicare D drugs is incorrect, someone will set me straight.

Welcome to the Wonderful World of Medicare.

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Ugh, yes. I'll ask about treatment in the MD office vs. infusion center. Did it make any difference in your coverage? Your explanation sounds correct, but yes someone will let us know! 🙂

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@babs10

@rjd, When teriparatide was prescribed, the pharmacy called me to make sure I understood the cost. I didn't!!! so I called Medicare and was referred to my supplemental. My supplemental referred me to my Part D prescription plan and I was told $1927/month was the copay. I am not eligible for any financial assistance. I saw a second MD who prescribed Tymlos which is even more expensive and not included in my Part D formulary. I saw a third MD and he prescribed Evenity. I haven't made any decisions about medication and was surprised that he contacted the infusion center without further conversation - I was waiting for the results of the CTX and P1NP. I called the infusion center on Friday and they told me they couldn't tell me if Evenity was covered unless I had an appointment so I made an appointment and hope to hear back from them this week. I don't think I can take Evenity due to a blood clot DX in my 20s, but wanted to play this out pending further conversation with the doctor.

I forgot that Evenity is different (thanks @susanfalcon52) b/c it is given at an infusion center so I'm sure I'm wrong about that one and have to wonder why the my Part D prescription plan and the infusion center didn't tell me that. Based on what @windyshores wrote, I will call Medicare and double check on Tymlos. Nothing about this diagnosis is easy.

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I have traditional Medicare and a plan D prescription program. I’m on Tymlos and don’t qualify for financial assistance. My medication comes from CVS specialty pharmacy. The cost was quoted about $1200.

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@babs10

Ugh, yes. I'll ask about treatment in the MD office vs. infusion center. Did it make any difference in your coverage? Your explanation sounds correct, but yes someone will let us know! 🙂

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Fellow travelers: I find this discussion so incredibly fascinating. If only we could fund and conduct our own research programs. We would rule the world! There is so much research out there, and yet so little. I am weary from thinking about this ALL THE TIME…reading, worrying, exercising, supplementing, searching for yet another test, talking about it ad nauseam to my patient husband. Babs, I see you have also posted on Inspire….some very educated folks there as well. Hope someone weighs in about the discordance. I have the opposite DEXA discordance of bad spine, ok hips; but then that’s flipped with a REMS. Research is minimal, except to say that discordance is not uncommon. Verdict weak about whether that indicates higher risk fracture in itself. Ugh! My personal trainer suggests that I have paralysis by analysis, something I’m good at, and that’s spot on, BUT….that has served me well many times before. Breathe! Listen to your gut! Gut might say go for the meds or it might say…..just wait a bit longer….either is unique to each of us. My husband didn’t have the luxury of reading every research paper when he was diagnosed with AML many years ago….he was just plain dying….he put his veins out for any and all terrifying medications, while I READ about them! Sometimes I wish I could have that attitude and just go with the meds, but we have a condition that is not life-threatening, at least at this given moment in time, so it’s a good thing bad thing I guess.
Ok, enough of the overthinking….again….we must hang in there together! Oh, husband is alive and well after 13 years….was given 5% chance of two year survival! Meds are not always a bad thing…….just saying……

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