In addition, I see you are not to have collagen or biotin 48 hours before CTX testing. Does this mean only if you take it in supplements or does that mean also as in foods- collagen as in bone broth and biotin as in sweet potatoes, seeds, eggs at etc.?
Keith McCormick, the author of Great Bones, says anything over 400-450 is high. I am away from home today so can't access my notes, but I believe my orthopedist said something like that too. I think he said he prefers the numbers to be in the 300 range.
I am a 79 year old women and will finish 2-yr Tymlos regime in August. DEXA scan midway through treatment showed significant improvement. My endo wants me to start Fosamax after Tymlos. I am considering to be tested for CTX and P1NP (covered by insurance) before starting Fosamax.
I take daily statin (10 mg) beta blocker (25 mg) and blood pressure (2.5 mg) med.
Is it a good idea?
If you think this Q&A will help others feel free to post.
rajmayo22, it's a really good idea to get the bone markers. CTX is most useful for determining bisphosphonate use. Tymlos doesn't raise osteoclasts (CTX) in the way that Forteo does. A low CTX would encourage the provider to extend Tymlos use rather than starting Fosamax. Significantly, too would be the second CTX after a month or two of Fosamax to determine it the medication is benefitting your bones. The risks with Fosamax are small. But why take a med that is all risk and no gain.
I recommend P1NP as well. Though there isn't controlled clinical data, more thinking phsicians, or physicians (and patients) who are thinking are considering the balance between CTX and P1NP to determine best levels of CTX.
Information from your bone markers would benefit your treatment plan. And mine, if you post them.
rajmayo22, it's a really good idea to get the bone markers. CTX is most useful for determining bisphosphonate use. Tymlos doesn't raise osteoclasts (CTX) in the way that Forteo does. A low CTX would encourage the provider to extend Tymlos use rather than starting Fosamax. Significantly, too would be the second CTX after a month or two of Fosamax to determine it the medication is benefitting your bones. The risks with Fosamax are small. But why take a med that is all risk and no gain.
I recommend P1NP as well. Though there isn't controlled clinical data, more thinking phsicians, or physicians (and patients) who are thinking are considering the balance between CTX and P1NP to determine best levels of CTX.
Information from your bone markers would benefit your treatment plan. And mine, if you post them.
Thanks for informing me of CTX as a marker for osteoclast growth.
What I understand is that one should not continue Tymlos injections in excess of two years (FDA approval limit). Fosamax is my option suggested by my Endo.
I will get a DEXA scan as well at the end of Tymlos treatment.
The black box was removed from Tymlos by the FDA in June 2022. Patients are extending use ot three and four years. I'm finishing a year on Forteo. The osteoclasts catch up to the osteoblasts with Forteo at 18 months. Tymlos doesn't excite osteoclasts as much as Forteo effecting a longer anabolic window.
Serum CTX measure a fragment (of C-terminal telopeptide) of type 1 collagen released during resorption of mature bone.
Serum P1NP measures a fragment (of the amino propeptide) of procollagen type 1 cleaved during bone growth.
You probably already know to fast and have an early morning serum draw. Don't get up early and exercise first, like I did. It you take biotin skip it for a couple of days before the draw.
Thank you very much.
I am traveling to Italy for 6 weeks in a few days and will certainly be careful. I have a scheduled appointment with my endocrinologist to repeat bloodwork and begin Reclast. As I need a tooth extraction in July, I won't be beginning Reclast nor do I want to. So I'll have to ask her about Forteo and Tymlos at my appointment. Unfortunately I will still need a maintenance drug so I'll be back to the same dilemma in a year or two!
Thank you for your interest, advice, concern and support!
You said you have an appt with your endo for bloodwork and to begin Reclast, but also said you won't or don't want to begin Reclast. What did you decide to do about taking it? My endo suggested it to me (my lumbar spine is -3.9) but I'd prefer another option, just not sure what to take. I can't get in to see my endo for 4 months to discuss.
You said you have an appt with your endo for bloodwork and to begin Reclast, but also said you won't or don't want to begin Reclast. What did you decide to do about taking it? My endo suggested it to me (my lumbar spine is -3.9) but I'd prefer another option, just not sure what to take. I can't get in to see my endo for 4 months to discuss.
rajmayo22, it's a really good idea to get the bone markers. CTX is most useful for determining bisphosphonate use. Tymlos doesn't raise osteoclasts (CTX) in the way that Forteo does. A low CTX would encourage the provider to extend Tymlos use rather than starting Fosamax. Significantly, too would be the second CTX after a month or two of Fosamax to determine it the medication is benefitting your bones. The risks with Fosamax are small. But why take a med that is all risk and no gain.
I recommend P1NP as well. Though there isn't controlled clinical data, more thinking phsicians, or physicians (and patients) who are thinking are considering the balance between CTX and P1NP to determine best levels of CTX.
Information from your bone markers would benefit your treatment plan. And mine, if you post them.
CTx on it's own can be deceiving. For example, my January CTx was 115. After my third Evenity injection it went up to 355. If I hadn't had my P1NP to compare to, I would have thought that my treatment wasn't working. That couldn't be further from reality.
Comparison of the ratios of P1NP to CTx shows that my bone turnover improved dramatically. The P1NP went up so much, that it more than negated the increase in CTx.
When looking at these ratios and the following equation, you don't need to take into account that the unit of measurement given for CTx (pg/mL) is not the same as that for P1NP (ng/mL). When comparing ratios, that's not relevant.
Here are my scores and ratios for comparison:
Jan 2024
*P1NP=11*
*CTx=115*
The ratio was approximately 1 P1NP to 10 CTx.
This means that the CTx number was 10 times higher than the P1NP number.
April 2024
*P1NP=102*
*CTx=355*
The ratio was approximately 1 P1NP to 3.5 CTx.
This means that the CTx number was only 3.5 times higher than the P1NP number.
Another way to compare the two scores and track progress was covered in a YouTube video by Dr. Doug Lucas last December.
Here's the link: https://youtu.be/NgZf1Vu8UyM?si=elj8Y6u_bWMLY9UT
This is the equation that he uses:
P1NP ÷ (CTx ÷ 1000) = X
When the answer (X) goes up, you're headed in the right direction.
Here are the numbers that I get when I do the calculation for my January and April tests:
January = 95.5
April = 287
Knowing the P1NP in my case makes a huge difference.
@hopefullibrarian
helpfullibrarian, thanks I hadn't seen Lucas. And the link led me to Eastel. His conclusion that "anabolic drugs are the most helpful with high turnover markers;" that the least significant change is based on values for a 31 to 40 year old; and that expectations of higher bone growth with low turnover markers are not being substantiated reassure me that common sense might rule the bones.
I’m not quite as low, but getting closer. I may start Tymlos and hope I can tolerate it and continue to exercise a lot. I do not want to take any of the follow up drugs. My endocrinologist suggested that I might just be able to stay on Tymlos for life. He’s not in favor of six months on and six months off. I’ve had previous soft tissue sarcoma, so scared to stay on, but Tymlos/Forteo seem like the only drugs I would consider. Any help here on long term use?
My humble understanding is that tymlos 'pushes - forces' the osteoblasts to build bone. After 16/18/22 months these cells do not respond as well to the medication. The osteoclasts are ramped up to 'dismantle bone' and this makes the 'bone coupling' ( 'building' compared to 'dismantling') out of sync.
Hopefully you have been keeping track of P1NP and CTX- bone markers. The 'bone building' rates can be checked thru bone makers ( P1NP ). When this result starts to wane compared to your history, then the medication is losing effectiveness. Tymlos is then stopped; a medication is given immediately for a short time to maintain the gains. Do not skip this step. I repeat do not skip this step. TYmlos was just apporved to be given again - how effective this is depends on many issues including bone markers and dexa and tbs. Make sure your endo is a BONE specialist. May you get good guidance and restore your bones to strenght and vitality.
Connect
Connect
Like
Helpful
Hug
In addition, I see you are not to have collagen or biotin 48 hours before CTX testing. Does this mean only if you take it in supplements or does that mean also as in foods- collagen as in bone broth and biotin as in sweet potatoes, seeds, eggs at etc.?
From Mayo Clinic: Postmenopausal: 177-1015 pg/mL.
Keith McCormick, the author of Great Bones, says anything over 400-450 is high. I am away from home today so can't access my notes, but I believe my orthopedist said something like that too. I think he said he prefers the numbers to be in the 300 range.
rajmayo22, it's a really good idea to get the bone markers. CTX is most useful for determining bisphosphonate use. Tymlos doesn't raise osteoclasts (CTX) in the way that Forteo does. A low CTX would encourage the provider to extend Tymlos use rather than starting Fosamax. Significantly, too would be the second CTX after a month or two of Fosamax to determine it the medication is benefitting your bones. The risks with Fosamax are small. But why take a med that is all risk and no gain.
I recommend P1NP as well. Though there isn't controlled clinical data, more thinking phsicians, or physicians (and patients) who are thinking are considering the balance between CTX and P1NP to determine best levels of CTX.
Information from your bone markers would benefit your treatment plan. And mine, if you post them.
Thanks for informing me of CTX as a marker for osteoclast growth.
What I understand is that one should not continue Tymlos injections in excess of two years (FDA approval limit). Fosamax is my option suggested by my Endo.
I will get a DEXA scan as well at the end of Tymlos treatment.
The black box was removed from Tymlos by the FDA in June 2022. Patients are extending use ot three and four years. I'm finishing a year on Forteo. The osteoclasts catch up to the osteoblasts with Forteo at 18 months. Tymlos doesn't excite osteoclasts as much as Forteo effecting a longer anabolic window.
Serum CTX measure a fragment (of C-terminal telopeptide) of type 1 collagen released during resorption of mature bone.
Serum P1NP measures a fragment (of the amino propeptide) of procollagen type 1 cleaved during bone growth.
You probably already know to fast and have an early morning serum draw. Don't get up early and exercise first, like I did. It you take biotin skip it for a couple of days before the draw.
-
Like -
Helpful -
Hug
1 ReactionYou said you have an appt with your endo for bloodwork and to begin Reclast, but also said you won't or don't want to begin Reclast. What did you decide to do about taking it? My endo suggested it to me (my lumbar spine is -3.9) but I'd prefer another option, just not sure what to take. I can't get in to see my endo for 4 months to discuss.
I pushed off my appt until November. I can't think of another option - I'm stalling!
CTx on it's own can be deceiving. For example, my January CTx was 115. After my third Evenity injection it went up to 355. If I hadn't had my P1NP to compare to, I would have thought that my treatment wasn't working. That couldn't be further from reality.
Comparison of the ratios of P1NP to CTx shows that my bone turnover improved dramatically. The P1NP went up so much, that it more than negated the increase in CTx.
When looking at these ratios and the following equation, you don't need to take into account that the unit of measurement given for CTx (pg/mL) is not the same as that for P1NP (ng/mL). When comparing ratios, that's not relevant.
Here are my scores and ratios for comparison:
Jan 2024
*P1NP=11*
*CTx=115*
The ratio was approximately 1 P1NP to 10 CTx.
This means that the CTx number was 10 times higher than the P1NP number.
April 2024
*P1NP=102*
*CTx=355*
The ratio was approximately 1 P1NP to 3.5 CTx.
This means that the CTx number was only 3.5 times higher than the P1NP number.
Another way to compare the two scores and track progress was covered in a YouTube video by Dr. Doug Lucas last December.
Here's the link: https://youtu.be/NgZf1Vu8UyM?si=elj8Y6u_bWMLY9UT
This is the equation that he uses:
P1NP ÷ (CTx ÷ 1000) = X
When the answer (X) goes up, you're headed in the right direction.
Here are the numbers that I get when I do the calculation for my January and April tests:
January = 95.5
April = 287
Knowing the P1NP in my case makes a huge difference.
-
Like -
Helpful -
Hug
5 Reactions@hopefullibrarian
helpfullibrarian, thanks I hadn't seen Lucas. And the link led me to Eastel. His conclusion that "anabolic drugs are the most helpful with high turnover markers;" that the least significant change is based on values for a 31 to 40 year old; and that expectations of higher bone growth with low turnover markers are not being substantiated reassure me that common sense might rule the bones.
My humble understanding is that tymlos 'pushes - forces' the osteoblasts to build bone. After 16/18/22 months these cells do not respond as well to the medication. The osteoclasts are ramped up to 'dismantle bone' and this makes the 'bone coupling' ( 'building' compared to 'dismantling') out of sync.
Hopefully you have been keeping track of P1NP and CTX- bone markers. The 'bone building' rates can be checked thru bone makers ( P1NP ). When this result starts to wane compared to your history, then the medication is losing effectiveness. Tymlos is then stopped; a medication is given immediately for a short time to maintain the gains. Do not skip this step. I repeat do not skip this step. TYmlos was just apporved to be given again - how effective this is depends on many issues including bone markers and dexa and tbs. Make sure your endo is a BONE specialist. May you get good guidance and restore your bones to strenght and vitality.
-
Like -
Helpful -
Hug
2 Reactions