Support For Those Quitting Prolia

Thank you for sharing your knowledge on this matter. I still struggle with understanding conceptually the osteoclast/osteoblast connection.

Especially good to know that the CTX may continue to decrease with further Fosomax use. But it would be nice to know what the CTX target might be.

I would like to stop the Fosamax ASAP. Ever since I learned that a problem with this medication is that it interferes with the removal of old bone so that new bone may be forming on a foundation of old bone rather than on a cleaned up base (or not even new bone forming at all) I have wanted to say good-by to Fosamax.

How long do you think you have to be off Fosamax in order to reset if future treatment with an anabolic is warranted????????

Best of luck with your own osteo progress and thank you. You certainly have helped many of us on Connect.

You asked a question about whether there should be concern about your low CTX scores. The only responses to your initial query that I saw were: 1) low CTX is good and 2) others posting CTX results similar to yours.

I am going to play devil's advocate here. It seems to me that it is possible that CTX can be too low. First, I note several posts indicating that dental work is not recommended with CTX lower than 150. Second, I considered the established reference range of about 171-970...seems to me there ought to be a reason why the reference range low is about 170. Perhaps, we are just perplexed about what that reason might be (in addition to the dental issue.)

Third, I reviewed relevant sections of McCormick's Great Bones....and that produced a bonanza of info. McCormick prefers a different CTX relevant range for post-menopausal women (his suggested range is 100-375). He does not want to see anything below 100 because....

"....bone needs to have osteoclastic bone resorption. If resorption activity gets too low, it can lead to adynamic, or low-turnover, fragile bone, which will increase fracture risk and predisposed a patient to osteonecrosis of the jaw and atypical femur fractures." (P. 148.)

McCormick's take on a too low CTX score comports with my new conceptual understanding of the dynamics of bone remodeling (see below.)

He further strongly urges a testing protocol for CTX of having blood drawn a) as early in the day as possible;b) after a night of strict fasting (he says CTX can go down 20% without fasting) and c) to stop taking any biotin and collagen supps for 48 hours.

I assume you followed this protocol?

I have admittedly had trouble conceptually with what is often described as a 'dynamic process' of bone breakdown and bone creation. This process is often referenced as 'bone remodeling.' But I still search for better info about what the balance or the relationship between these 2 processes might be.

I recently viewed a video posted in one of the Connect threads. https://youtu.be/Cd0YT-OV97c?si=FHXCpupgt1A5AaQP. It really helped me understand some things.

As a result, I now see bone remodeling as similar to painting. (Chuckling is allowed.)

Everyone knows that when something needs to be painted, you just do not slap a coat of paint on top of the old paint and call it a day. Rather, you want to prepare the surface for a new coat of paint. For example, removing peeling paint and certainly doing some sanding. Proper prep work makes the difference for the application of a new coat of paint that will last.

Likewise bone formation needs proper prep of the existing bone via the resorption activity of osteoclastic cells.

Now that you are finished chuckling about my painting analogy, would appreciate any thoughts about anyone seeing flaws in my new and improved understanding of bone remodeling.

So the bottom line? If you are confident about your CTX results, it appears your bones are likely not being properly prepared for the osteoblastic production of new bone.

If it was me, I would be looking for a medical consult about what can be done to increase the CTX score. I would be reluctant to play doctor on myself even though it might be tempting to simply stop taking/reducing the post-Prolia alendronate. Perhaps some other medical condition is depressing the CTX score?

Thank you, rjd, for your thoughts and feedback, and i do think your "painting" analogy is appropriate!

I have read about the risks of doing any invasive dental work while on bisphosphonates so will be keeping this in mind on my dental visits

I believe the reference CTX range of 171-970 is not actually a target or ideal range but merely the observed CTX values of healthy people in the relevant age group. On the other hand, Dr McCormick was suggesting a target range of 100-375

For now, i plan to carry on with my weekly Alendronate and schedule another BTM test in 3-4 months

Many thanks and all the best!

You are quite correct about the typical CTX reference range. I had forgotten it simply reflects what was observed among healthy folks in various age groups.

Not very helpful therefore in trying to understand what might or might not be happening with a very low CTX score and whether/why it should be concerning.

Now that I have a bit better grasp of the concept of bone remodeling, I would be concerned about a low CTX score for the reasons given by McCormick.

Bone density and bone strength might be related but are likely not the same. While osteopenic, I took 2 very bad falls, each on a hard surface. One should have resulted in a broken wrist; the other in a broken bone in the hip area. They were both painful and took forever to get better....but no bone breaks.

Those 2 incidents began my personal questioning about bone density as the test for determining treatment. And about bone density increasing with bisphosphonate treatment, when the mechanism of that increase may be more like slapping on a coat of paint without proper prep work.

Surely this area of medical research and practice can do better. Best of luck with your bones.

You asked a question about whether there should be concern about your low CTX scores. The only responses to your initial query that I saw were: 1) low CTX is good and 2) others posting CTX results similar to yours.

I am going to play devil's advocate here. It seems to me that it is possible that CTX can be too low. First, I note several posts indicating that dental work is not recommended with CTX lower than 150. Second, I considered the established reference range of about 171-970...seems to me there ought to be a reason why the reference range low is about 170. Perhaps, we are just perplexed about what that reason might be (in addition to the dental issue.)

Third, I reviewed relevant sections of McCormick's Great Bones....and that produced a bonanza of info. McCormick prefers a different CTX relevant range for post-menopausal women (his suggested range is 100-375). He does not want to see anything below 100 because....

"....bone needs to have osteoclastic bone resorption. If resorption activity gets too low, it can lead to adynamic, or low-turnover, fragile bone, which will increase fracture risk and predisposed a patient to osteonecrosis of the jaw and atypical femur fractures." (P. 148.)

McCormick's take on a too low CTX score comports with my new conceptual understanding of the dynamics of bone remodeling (see below.)

He further strongly urges a testing protocol for CTX of having blood drawn a) as early in the day as possible;b) after a night of strict fasting (he says CTX can go down 20% without fasting) and c) to stop taking any biotin and collagen supps for 48 hours.

I assume you followed this protocol?

I have admittedly had trouble conceptually with what is often described as a 'dynamic process' of bone breakdown and bone creation. This process is often referenced as 'bone remodeling.' But I still search for better info about what the balance or the relationship between these 2 processes might be.

I recently viewed a video posted in one of the Connect threads. https://youtu.be/Cd0YT-OV97c?si=FHXCpupgt1A5AaQP. It really helped me understand some things.

As a result, I now see bone remodeling as similar to painting. (Chuckling is allowed.)

Everyone knows that when something needs to be painted, you just do not slap a coat of paint on top of the old paint and call it a day. Rather, you want to prepare the surface for a new coat of paint. For example, removing peeling paint and certainly doing some sanding. Proper prep work makes the difference for the application of a new coat of paint that will last.

Likewise bone formation needs proper prep of the existing bone via the resorption activity of osteoclastic cells.

Now that you are finished chuckling about my painting analogy, would appreciate any thoughts about anyone seeing flaws in my new and improved understanding of bone remodeling.

So the bottom line? If you are confident about your CTX results, it appears your bones are likely not being properly prepared for the osteoblastic production of new bone.

If it was me, I would be looking for a medical consult about what can be done to increase the CTX score. I would be reluctant to play doctor on myself even though it might be tempting to simply stop taking/reducing the post-Prolia alendronate. Perhaps some other medical condition is depressing the CTX score?

My CTX is below 50 obtained less than a month before my next scheduled Prolia shot. I had to find my own way to get that done by the way. I just had a consult with Dr. McCormick. He suggested I delay the June 17 shot which I am. I appreciate your comment about too low. I was unaware of that. I read it now also in Great Bones. In fact, I may still be having compression fractures. Dr. M is trying to help me determine this. It is scary and confusing. I feel I am operating in " no man's land"

I can understand how scary and confusing this must feel. The entire osteo landscape often seems like 'no man's land' to me.

I just reviewed all your postings because I wanted more info about your statement that you 'may still be having compression fractures.' Still?????? Could you please expand on that as I see no previous reference to any fractures?

Perhaps also Gently might weigh in as she concurred with your previous effort to obtain a CTX test.

I am sorry but today is completely filled with pre-existing commitments. But I will try to give this some thought and check in again some time tonight.

Meanwhile, I think I would have done exactly as you did in response to such a low CTX number....get a consult with Dr. M for consideration.