Hi @mayblin - I'm still on Prolia and it looks like I'm going to be on it for quite some time. While I checked CTX and P1NP for the first two years of treatments, I have not lately. But to your point, I do believe they might drift up as shown in the trial data. As a matter of fact, I plan to test in six months right before my next injection to check on it. Attached is a snap shot of my data so you can see when I tested.
This graph is fascinating - you're clearly tracking the changes very closely. I noticed the up-drifting CTX in a previous trial and was wondering about it. For the 6/22/2024 labs, i didn't see a CTX reading and it looks like P1NP was undetectable - was that right?
Thank you for sharing these firsthand data Michael.
Hi @mayblin - I'm still on Prolia and it looks like I'm going to be on it for quite some time. While I checked CTX and P1NP for the first two years of treatments, I have not lately. But to your point, I do believe they might drift up as shown in the trial data. As a matter of fact, I plan to test in six months right before my next injection to check on it. Attached is a snap shot of my data so you can see when I tested.
Hi, @mayblin and @michaellavacot: You both seem very knowledgeable about the blood turnover markers, so wanted to ask you a question about interpretation. I recently had an endo appointment and bullied my doc into ordering P1NP & CTX labs. She sent me the results with the note that "labs were normal." Could you direct me to any resource that would show me how to interpret my numbers?
Thanks for any help you can give...
@kgrainger , all - for those of you that do not want want to watch a video, here is a snapshot that shows the transition strategy for long term Prolia (greater than 2.5 years) based on the doctors that presented at the 2025 World Congress on Osteoporosis. Dr. Langdahl says that if you can't get CTX measured for what ever reason, that she give a second Reclast infusion at the 6 month period.
@michaellavacot, do you happen to know if insurance pays for a second Reclast infusion in a one-year time period? I told my endo that some people were getting multiple Reclast infusions (necessary because not holding onto gains from Prolia), and she argued with me that "you can only get one infusion a year." I know she's wrong, but I'm wondering whether it would be covered if the "standard of care" is only 1 per year. It must be very expensive out of pocket.
@michaellavacot, do you happen to know if insurance pays for a second Reclast infusion in a one-year time period? I told my endo that some people were getting multiple Reclast infusions (necessary because not holding onto gains from Prolia), and she argued with me that "you can only get one infusion a year." I know she's wrong, but I'm wondering whether it would be covered if the "standard of care" is only 1 per year. It must be very expensive out of pocket.
I don't know if insurance would cover additional Reclast infusions within a year. My guess is that you doctor would need to convince your insurance company to cover it.
Hi, @mayblin and @michaellavacot: You both seem very knowledgeable about the blood turnover markers, so wanted to ask you a question about interpretation. I recently had an endo appointment and bullied my doc into ordering P1NP & CTX labs. She sent me the results with the note that "labs were normal." Could you direct me to any resource that would show me how to interpret my numbers?
Thanks for any help you can give...
Based on the readings I've done so far, there doesn't seem to be a well-defined, quantifiable method for interpreting bone markers. To me, the trend is my friend. The overall trend appears to be the most informative, especially when comparing your lab results to patterns observed in clinical studies. When starting a new or uncertain treatment pathway, it's ideal to have a baseline before initiation, and to monitor periodically to assess whether the therapy is effective. Admittedly, it can sometimes take persistence to convince a physician - but presenting clear reasoning can help (you could also ask pcp for lab order, my insurance doesn't mind who orders them). That said, during the process of prolia discontinuation, monitoring bone turnover markers is essential. This might be a good reference to start: https://academic.oup.com/edrv/article/44/3/417/6889555
If you are comfortable sharing, what are your bone marker levels at this point in your therapy?
Based on the readings I've done so far, there doesn't seem to be a well-defined, quantifiable method for interpreting bone markers. To me, the trend is my friend. The overall trend appears to be the most informative, especially when comparing your lab results to patterns observed in clinical studies. When starting a new or uncertain treatment pathway, it's ideal to have a baseline before initiation, and to monitor periodically to assess whether the therapy is effective. Admittedly, it can sometimes take persistence to convince a physician - but presenting clear reasoning can help (you could also ask pcp for lab order, my insurance doesn't mind who orders them). That said, during the process of prolia discontinuation, monitoring bone turnover markers is essential. This might be a good reference to start: https://academic.oup.com/edrv/article/44/3/417/6889555
If you are comfortable sharing, what are your bone marker levels at this point in your therapy?
Thanks for this reference on the bone turnover markers, @mayblin. It is indeed a good place to start.
My last dexa, which was done this past January while I was still injecting Tymlos, gave me a lumbar T score of -1.2; left femoral neck and left total hip were both -3.4.
I gained next to nothing in two years in my hip on the Tymlos. It did a better job for me in the spine, a 7.1 % increase in BMD, pushing me back into the osteopenic range.
The situation with my hips makes me very nervous, and is the main reason I have been trying to find out if Evenity would be safe for me given my cardiac history. I thought maybe I could do a couple of months just to boost my P1NP. (Hence my many questions about the drug -- don't want a heart attack trying to save my skeleton.)
A side issue: I have some avascular necrosis in my hips, thought to be the result of 13 years on steroids for ulcerative colitis. The necrosis isn't widespread. But it makes me wonder how much of a gain I can expect in the hip from any osteoporosis drug. Yet another question to which I have not been able to find an answer...
I was on Prolia 11years always in osteopenia, the 11th osteoporosis. I tried Reclast my scores worse. Feb I started evenity. Next Feb I’ll go on Prolia. I didn’t have a protocol to stop it.
Thanks for this reference on the bone turnover markers, @mayblin. It is indeed a good place to start.
My last dexa, which was done this past January while I was still injecting Tymlos, gave me a lumbar T score of -1.2; left femoral neck and left total hip were both -3.4.
I gained next to nothing in two years in my hip on the Tymlos. It did a better job for me in the spine, a 7.1 % increase in BMD, pushing me back into the osteopenic range.
The situation with my hips makes me very nervous, and is the main reason I have been trying to find out if Evenity would be safe for me given my cardiac history. I thought maybe I could do a couple of months just to boost my P1NP. (Hence my many questions about the drug -- don't want a heart attack trying to save my skeleton.)
A side issue: I have some avascular necrosis in my hips, thought to be the result of 13 years on steroids for ulcerative colitis. The necrosis isn't widespread. But it makes me wonder how much of a gain I can expect in the hip from any osteoporosis drug. Yet another question to which I have not been able to find an answer...
I see, you had nice gain in lumbar spine! Among the three anabolics, evenity does show better gains in the hip and femoral neck areas in clinical trials. Based on shared experiences in this forum, its effect could be somewhat unpredictable. Avascular issues make it even more unpredictable imo. I once watched a presentation discussing how blood supply to bone changes with age. Essentially, age-related vascular changes can impact bone formation. Can't locate that video now 🙁
I see, you had nice gain in lumbar spine! Among the three anabolics, evenity does show better gains in the hip and femoral neck areas in clinical trials. Based on shared experiences in this forum, its effect could be somewhat unpredictable. Avascular issues make it even more unpredictable imo. I once watched a presentation discussing how blood supply to bone changes with age. Essentially, age-related vascular changes can impact bone formation. Can't locate that video now 🙁
Yes, @mayblin, I was thinking that if any of the drugs could help my hips, it would be Evenity. My rheumatologist describes patients having heroic gains. I would settle for a gain, period! 😊
Hope you are doing well on your program. Sending best wishes. And if you find that video on vascular changes, give a shout. I'll look as well in the meantime...
I am supposed to have my second Prolia injection in September. I don't want to and am looking for a way to get off it. I have been exhausted since the initial injection and my eczema has gotten worse. It's hard to say if bone and muscle pain is worse because I have osteoarthritis. I did Forteo years ago with hardly any side effects. I went from osteoporosis to osteopenia. I tried Reclast and the jaw pain was so bad I would not do it again. My T- scores remained in the osteopenia range until this year. I tried several bisphosphonates but my GERD was really horrible!
Has anyone tried a natural protocol?
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This graph is fascinating - you're clearly tracking the changes very closely. I noticed the up-drifting CTX in a previous trial and was wondering about it. For the 6/22/2024 labs, i didn't see a CTX reading and it looks like P1NP was undetectable - was that right?
Thank you for sharing these firsthand data Michael.
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Like -
Helpful -
Hug
2 ReactionsHi, @mayblin and @michaellavacot: You both seem very knowledgeable about the blood turnover markers, so wanted to ask you a question about interpretation. I recently had an endo appointment and bullied my doc into ordering P1NP & CTX labs. She sent me the results with the note that "labs were normal." Could you direct me to any resource that would show me how to interpret my numbers?
Thanks for any help you can give...
@michaellavacot, do you happen to know if insurance pays for a second Reclast infusion in a one-year time period? I told my endo that some people were getting multiple Reclast infusions (necessary because not holding onto gains from Prolia), and she argued with me that "you can only get one infusion a year." I know she's wrong, but I'm wondering whether it would be covered if the "standard of care" is only 1 per year. It must be very expensive out of pocket.
I don't know if insurance would cover additional Reclast infusions within a year. My guess is that you doctor would need to convince your insurance company to cover it.
-
Like -
Helpful -
Hug
1 ReactionBased on the readings I've done so far, there doesn't seem to be a well-defined, quantifiable method for interpreting bone markers. To me, the trend is my friend. The overall trend appears to be the most informative, especially when comparing your lab results to patterns observed in clinical studies. When starting a new or uncertain treatment pathway, it's ideal to have a baseline before initiation, and to monitor periodically to assess whether the therapy is effective. Admittedly, it can sometimes take persistence to convince a physician - but presenting clear reasoning can help (you could also ask pcp for lab order, my insurance doesn't mind who orders them). That said, during the process of prolia discontinuation, monitoring bone turnover markers is essential. This might be a good reference to start:
https://academic.oup.com/edrv/article/44/3/417/6889555
If you are comfortable sharing, what are your bone marker levels at this point in your therapy?
-
Like -
Helpful -
Hug
1 ReactionThanks for this reference on the bone turnover markers, @mayblin. It is indeed a good place to start.
My last dexa, which was done this past January while I was still injecting Tymlos, gave me a lumbar T score of -1.2; left femoral neck and left total hip were both -3.4.
I gained next to nothing in two years in my hip on the Tymlos. It did a better job for me in the spine, a 7.1 % increase in BMD, pushing me back into the osteopenic range.
The situation with my hips makes me very nervous, and is the main reason I have been trying to find out if Evenity would be safe for me given my cardiac history. I thought maybe I could do a couple of months just to boost my P1NP. (Hence my many questions about the drug -- don't want a heart attack trying to save my skeleton.)
A side issue: I have some avascular necrosis in my hips, thought to be the result of 13 years on steroids for ulcerative colitis. The necrosis isn't widespread. But it makes me wonder how much of a gain I can expect in the hip from any osteoporosis drug. Yet another question to which I have not been able to find an answer...
I was on Prolia 11years always in osteopenia, the 11th osteoporosis. I tried Reclast my scores worse. Feb I started evenity. Next Feb I’ll go on Prolia. I didn’t have a protocol to stop it.
-
Like -
Helpful -
Hug
1 ReactionI see, you had nice gain in lumbar spine! Among the three anabolics, evenity does show better gains in the hip and femoral neck areas in clinical trials. Based on shared experiences in this forum, its effect could be somewhat unpredictable. Avascular issues make it even more unpredictable imo. I once watched a presentation discussing how blood supply to bone changes with age. Essentially, age-related vascular changes can impact bone formation. Can't locate that video now 🙁
-
Like -
Helpful -
Hug
1 ReactionYes, @mayblin, I was thinking that if any of the drugs could help my hips, it would be Evenity. My rheumatologist describes patients having heroic gains. I would settle for a gain, period! 😊
Hope you are doing well on your program. Sending best wishes. And if you find that video on vascular changes, give a shout. I'll look as well in the meantime...
I am supposed to have my second Prolia injection in September. I don't want to and am looking for a way to get off it. I have been exhausted since the initial injection and my eczema has gotten worse. It's hard to say if bone and muscle pain is worse because I have osteoarthritis. I did Forteo years ago with hardly any side effects. I went from osteoporosis to osteopenia. I tried Reclast and the jaw pain was so bad I would not do it again. My T- scores remained in the osteopenia range until this year. I tried several bisphosphonates but my GERD was really horrible!
Has anyone tried a natural protocol?