Support For Those Quitting Prolia

Hello,
After almost 2 years on Prolia, I moved to a new state and new endocrinologist. She took me off Prolia because she felt I was too young (67) to be on it for the rest of my life. I agreed to get a bone density and revisit at the next appointment. In the meantime, (3 months) I was diagnosed with two compression fractures in my spine. Not sure where to go from here. Note to self and anyone reading. DO NOT go off Prolia without a plan going forward.

I share your relief to learn that your most recent CTX test number has presumably increased and is now measurable.

And I am heartened to also learn you have a well-designed plan to reduce the alendronate dosage perhaps with the aim, in part, of increasing your low CTX number whilst avoiding Prolia related 'rebound.'

I hated thinking with such a low CTX number, new bone might be forming on top of a less than ideal foundation of old bone because it is not undergoing osteoclastic grooming/preparation.

Are you monitoring your iPTH level for a particular reason? And could that reason be connected to the low CTX number?

Also you implied in an earlier post that you stopped Prolia because you had problems with it. What sort of problems did you experience?

I need to start thinking about weaning myself from post-Prolia alendronate but should perhaps wait until I have another CTX test in December (had no baseline.)By then, it will have been 2 years since my last Prolia injection, well past any 18 month rebound window.

My one and only CTX score was 313, taken last May after one year on alendronate which was started when my 3rd Prolia injection was due.

Would prefer for the CTX number to go down a bit more but it does not appear worrisomely high standing alone. Just wish I understood better what it means in relation to my P1NP result and to somehow knowing that the resulting bone formation is producing something strong, not just dense. I am very keen about not confusing bone density and bone strength.

Perhaps I will copy your alendronate reduction strategy .....if so, do I have your permission to call it the 'formisc step-down approach?'

@rjd,
Yes, it was a big relief! My target for CTX is between 150-280 when not on any osteo med. Then I won't have to be so anxious when I see my dentist!

I included iPTH not for any particular reason but because it is a standard bone-related marker. Seeing it in the recommended range at least indicates that my osteo is not caused by an over-active thyroid gland

I am not sure how iPTH co-relates to CTX (if it does at all) but Michael Lavacot did make some interesting comments on my iPTH reading after my 2nd BTM test. I quote from his earlier post as follows:

"Hi formisc - Yes, the standard range for PTH is 15-65 pg/mL, however, it will go higher and even out of range when your body has a low calcium level. This is the signal to your bone, kidneys, and intestines to gather more calcium into your blood. My last blood test where my calcium dropped to 8.7 (normally around 9.5), my PTH jumped to 70 (normally 45). So I increased my calcium to get it back up. Prolia (or bisphosphonates) can make it tough for your body to get calcium from your bones when it needs it, which is good for bones, but bad for your bodies ability to control calcium without adequate diet calcium." - Thanks, Michael!

I actually never had any side-effects from any of my 3 Prolia shots so I didn't stop because of any such reasons but because I did not like the long-term consequences of being on Prolia.

Your last CTX score should not be a cause for alarm. Not unless it goes up to 500, 600 or more. It would be good for you to plan your next steps after getting the results of your next BTM test. You might then decide to also do the "Alendronate step-down" - no, not claiming credit for this approach - at least not until it is proven to work! 🙂

@rjd,
Yes, it was a big relief! My target for CTX is between 150-280 when not on any osteo med. Then I won't have to be so anxious when I see my dentist!

I included iPTH not for any particular reason but because it is a standard bone-related marker. Seeing it in the recommended range at least indicates that my osteo is not caused by an over-active thyroid gland

I am not sure how iPTH co-relates to CTX (if it does at all) but Michael Lavacot did make some interesting comments on my iPTH reading after my 2nd BTM test. I quote from his earlier post as follows:

"Hi formisc - Yes, the standard range for PTH is 15-65 pg/mL, however, it will go higher and even out of range when your body has a low calcium level. This is the signal to your bone, kidneys, and intestines to gather more calcium into your blood. My last blood test where my calcium dropped to 8.7 (normally around 9.5), my PTH jumped to 70 (normally 45). So I increased my calcium to get it back up. Prolia (or bisphosphonates) can make it tough for your body to get calcium from your bones when it needs it, which is good for bones, but bad for your bodies ability to control calcium without adequate diet calcium." - Thanks, Michael!

I actually never had any side-effects from any of my 3 Prolia shots so I didn't stop because of any such reasons but because I did not like the long-term consequences of being on Prolia.

Your last CTX score should not be a cause for alarm. Not unless it goes up to 500, 600 or more. It would be good for you to plan your next steps after getting the results of your next BTM test. You might then decide to also do the "Alendronate step-down" - no, not claiming credit for this approach - at least not until it is proven to work! 🙂

What did you do after stopping the Prolia to lock in the gains ?

What do you pay for Alendronate (risendronate)? I was just prescribed 1 pill a month , so 12 pills a year. The first 3 month's worth will cost me $137.00!!!!!

@mmwagner46 When I first started on Alendronate (Fosamax in the U.S.) I had insurance through my employer (Blue Cross/Blue Shield) and so I paid $10 co-pay for a 3 month supply. All of my prescriptions when I was working were the same co-pay because the cost was negotiated through my union contract.

After I retired I went on Medicare Traditional. My Medicare Drug Prescription Plan paid for the prescription and I did not have a co-pay. So my cost was -0-. I will add that Alendronate has been the only medication I was prescribed on Medicare that I did have a co-pay.

Hi there mmwagner46 and Helen. I also take 1 Alendronate (Fosamax) tablet every Monday morning. There are (4) 70mg tablets per box and the three boxes are about $40.00 for 12 tablets.
Considering the amount of (SFN) neuropathy meds I take plus $200.00 a week for 2 Mayofascia treatments I usually don't pay much attention to those little 4 pill boxes.
Chris