To Quit Prolia or Not? How to get BTM tested?

Posted by awesomemomx2 @awesomemomx2, May 18 1:26pm

I need advice. Here is the back story I am a 71 year old women and live in rural MN. I have been on been on Prolia for 2 years (4 shots) without any prior BTMs done and no other osteoporosis medication prior to the Prolia. I feel I was not fully informed about the difficulty going off Prolia prior to starting it in June of 2022, in fact, I was told I could get off it in 1 to 2 years. My Total Dexa spine went from a -1.7 in 12/2019 to -4.3 in 12./21. My DEXA in 1/24 was -2.9. I have also altered my life style considerably. To say I was shocked and scared after this drastic decline is an understatement. To cut to the quick, I was told that I needed to go on medication by people I trusted to totally to inform me fully about the medication so I started Prolia 6/2022. This obviously was not the case. In the past year I learned about Mayo’s Osteoporosis and Calcium-Disorders Specialty Clinc. I just started to see an endocrinologist at Mayo who advises that I stay on Prolia at least a complete 3rd year. He is willing to take me of it after that should I desire. Which brings me to all of you with my dilemma. I understand the longer you are on Prolia the more challenging it is to get off. Going on Reclast would be necessary, however, this is not without its own issues. To complicate matters my husband has been diagnosis with Stage 4 cancer. The fifth shot is to occur on June 16th. I would like to get a CTX before that shot. I have been trying to find out the cost of a CTX and if Medicare would pay. I am told I have to get a doctor assistance. I have reached out to both my PCP and Endo. Neither has responded to me. I understand I will need to be able to get CTX markers on an ongoing basis if I go off Prolia. Right now I can’t even get one. I also need to know the cost if not covered due to finance concerns. All of this is time sensitive. I would like to get a CTX prior to my next Prolia shot in June. Are others having a challenge in getting doctors to order BTMs? Does anyone else have that same concerns with Prolia and trying to decide to stay or quit? Is anyone online from MN and can relate and assist me in my quest in knowing what to do? Is anyone working with Mayo in Rochester and what has your experience been like? Is anyone able to get BTM testing done easily in MN? What is the cost? Were you able to get Medicare to cover? Thank you for listening to my tale. I would so appreciate responses. Please private message me if you would prefer. Thank you

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In the context of your spouse's cancer, and your own course on Prolia, it seems reasonable to me that you continue on Prolia. I am not sure what choices you have though. I believe ( but check with doctor, read "Great Bones' by McCormick, or watch Ben Leder's video on YouTube on Combinaitons and Sequencing) that Tymlos and Forteo are not a good idea after Prolia, nor is Evenity. Once you are on Prolia it makes sense to at least get your bone density up before transitioning to Reclast. Or you could stop Prolia and rely on Reclast to further increase density.

It may be true that transition to Reclast earlier may make rebound less likely but people do do that transition after longer times on Prolia. My doctors say that waiting for a higher CTX hasn't been shown in studies to be useful. I know McCormick suggests this monitoring for optimal timing. You could also do a lower dose of Reclast more frequently and then be sure of effectiveness.

This is all very murky right now in terms of research. People can stay on Prolia a long time and it does work. Maybe in such a stressful situation that is the best course for you right now-? I would hope you can trust your doctor on this. Make sure with the doc that Reclast will take care of the rebound if you stay on Prolia longer.

I personally would not stress about the CTX and P1NP and other blood tests. It doesn't have to be complicated. I think you have two choices. That's my view and others can chime in with other views. I would hope you can continue to gain on Prolia (as long as you tolerate it) and focus on your husband as well.


Hi @awesomemomx2 im sorry to hear you are dealing with a difficult decision at a time when your husband needs you the most. I agree with @windyshores, it might be better to deal with stressful situations one at a time, considering what you are facing right now.

However, I would NOT suggest a partial or reduced dose of Reclast with more frequent dosing for the cessation of prolia, unless you have health conditions such as severe kidney disease or afib, or, this is true and tested dosing regimen.

Yes, PLEASE do your btms, especially CTX, before cessation of prolia and periodically during Reclast treatment. If you are a non-responder, the worst is wasting money. Getting off prolia is serious. The worst combo would be doing a partial dosing of Reclast without CTX monitoring. It’s like walking toward an unknown path blindfolded.

You can order CTX on your own from quest lab. There are other online venues you can use to order such as and bring the order form to quest lab to get tested. CTX costs about $125 without insurance claim. Ulta often have 20% discounts offering. You need an experienced endo to help you getting off prolia, s/he most likely than not, will monitor CTX.

Here is a link for a good review article on prolia cessation:

I hope you can read this article on studies:

Are you having side effects with Prolia? Some people stay on it for 10 years. One option, again, given your husband's cancer, might be to continue for awhile. Ask your doctor how much harder it would be to get off in a year or two. There are lots of studies on this. Some say that if you have a high fracture risk, one option is to stay on it until target is reached, or as long as 10 years.

If you have only done 4 doses, I understand that there is anxiety about stopping while the bone loss with transition might be easier to mitigate. The article above says Reclast should be given at 6 months or 12 months if bone markers are not available. One study showed no difference in results with different timings (see below).
The article also says alendronate is effective (Fosamax).

The issue with timing according to McCormick is that if Reclast is given too early , it won't work. and if given too late, bone loss might have occurred and fracture risk might have gone up. So McCormick suggests monitoring CTX to time the Reclast so that is it just right. My doctors don't do this - but then again, they don't use Prolia. If your endo won't do CTX, would your PCP?

I cannot do oral bisphosphonates like alendronate, so doing a lower dose of Reclast more frequently may, I hope, mimic the action of the more frequently taken orals like alendronate which are helpful. (I have both kidney issues and afib.) The idea of this for others was speculative since I have no choice.

@mayblin is right in their cautious advice, based on the fact that Reclast in one dose may be the most potent weapon against Prolia rebound and CTX monitoring might be key . There seems to be a lot of difference of opinion on this.

Apparently Evenity is a possibility. I was surprised to read that. It needs more study, but the article below mentions it. Can you ask about that?

Tymlos as a follow up causes bone loss and raloxifen isn't a good idea either.

If I were you, in the context of your husband being sick, I think I would stay on Prolia and hope that using Evenity as a follow-up is studied in the interim because honestly that looks like it has the best results.

If you are having side effects though, getting off and doing Reclast or alendronate with or without CTX testing makes sense.

ps please note corrections to earlier post: Evenity is a possibility, and bisphosphonates may mitigate loss but won't necessarily increase bone density after stopping Prolia


Hi @awesomemomx2 ,
Your plate is overflowing right now, I am so sorry we cannot sit down together over a cup of coffee. Living in a rural setting can bring some extra isolation. I am glad that you have found Connect and have others who have reached out to you. Do you have support with your husband's condition? You have done well, in getting an endocrinologist through the Mayo.
Why they have advised you to stay the course with Prolia, for now, can only be answered by them; but I suspect they have taken 'the long view'.
An excellent physician will 'not just treat the labs and scans", they will treat the whole patient, and that includes your whole life and major stressors.
Right now, your focus will be with your husband. Changing medications can be tricky, and right now you just cannot risk anymore complications with your own health.
I would suggest you phone the Mayo for more direction and support with your situation. Your situation is heavy and yet delicate. Although I do not know your clinic, I would expect there is someone who will speak with you by phone/ FaceTime, who will answer your questions and be of support as you deal with your hubby's stage four.
In the meantime, you will find support and caring folk here on Connect.
Just from my own experience right now, I am recovering from a serious adverse reaction to my replacement drug when getting off of Prolia. I was greatly concerned about CTX, and labs, etc, etc. My endocrinologist(whom I cannot see until the end of June) has consulted with my G.P.. She said that the CTX and P1NP is not as necessary right now. My bone density is sufficient for right now, as my body must recover first.
All medical advise must be tailored to the patient, including ALL the issues of that person's life. So, I am trusting my doctors, who know me well to give the best advise for just me alone, during this crazy time. So at this point in time, I am resting in that.... knowing that at the appropriate time I will move forward. In the meantime I am resting and following my medical advise... and trying not to worry about the matter of treatment, until I am able!
I do hope you will recieve all the caring support you need as you go through this difficult time.
Please let us know how you are proceeding.
Sending love, prayer and hugs to you this day.

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