Prolia discontinuation

Posted by czauderer @czauderer, Dec 12, 2024

Hi, due to an osteoporosis diagnosis, I took two injections of Prolia six months apart and due two side effects, I want to come off of it. I do not want to transition to a bisphosphonate or remain on one. How do I take myself off of Prolia safely? I am not getting a straight answer from my doctor.

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awesomemomx2, good thinking about P1NP.
I think everything is in the ratio. My CTX hasn't ever been below the baseline of 294. I don't see a ratio imbalance until CTX is in the 600s. At 424 pg/ml CTX with 128 P1NP mcg/L , my body is building bone.
Usually when the med lit talks about high bone turnover, the reference is to high bone dissolution. I'm
after high bone turnover that results in dissolution of damaged bone followed by new bone placement.
I have noticed that following P1NP after antiresorptives is unusual.

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Profile picture for awesomemomx2 @awesomemomx2

On January 2025 after 2.5 years on Prolia. (5 Shots). Started my transition off and switched to alendronate acid (Fosamax). I have done CTX testing every 3 months since then. My CTX has slowly but steadily been climbing and is now at 225. It climbed my about 20 points in the each of the first 3 month to taking a almost 40 point increase in the last 3. In Grassi et.al study found it should stay at below 212 if BMD was not going to diminish. Would be time for Zoledronate acid? It would appear to me I would be at a point that additional considerations need to be discussed. I have handled the Alendronate well. I exercise regularly including weights and have an overall good handle on my diet using supplementation. I have had a very high 24 hour calcium number in the past of as high as 456 in Dec. 24 which as dropped to 267 in Sept 2025. This seemed to be more of a concern of mine than my physicians, however. I will have another DEXA in January and another CTX. That will be the 1 year marker since coming off Prolia. Besides Grassi et al article “Zoledronate after Denosumab Discontiuation: Is Repeated Administrations More effective than a Single Infusion” I would suggest reading Lamy et.al “Denosumab for osteoporosis treatment : when, how, for whom, and for how long. A pragmatic approach. From the journal entitled Aging Clinicial and Experimental Research published 2025. Ladies, I would appreciate your feedback on your thoughts about my next right step. Thank you

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@awesomemomx2 I had posted my situation earlier as I had 4 shots of Prolia with the last one a year ago. I met with endo doc who I asked for ctx and other tests but she declined because I chose not to go on another pharmaceutical drug for osteoporosis . I will see my GP in 2 months and discuss, but so far no issues but know I have a way to go. So many things these doctors do not know about osteoporosis as far as things like not using same facility for your department scan, I was never informed that it's apples to oranges if you did not use same for another scan, also was never told my osteoarthritis in spine and neck could make my dexa look better than it is and that I should have a Rems scan not dexa. Never mention the hit on immune system either which caused much if the side effects. As one doctor I heard said osteoporosis is an epidemic and no good treatment nor enough resources or research. Very disheartening for us. One day at a time.

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Profile picture for gently @gently

awesomemomx2, good thinking about P1NP.
I think everything is in the ratio. My CTX hasn't ever been below the baseline of 294. I don't see a ratio imbalance until CTX is in the 600s. At 424 pg/ml CTX with 128 P1NP mcg/L , my body is building bone.
Usually when the med lit talks about high bone turnover, the reference is to high bone dissolution. I'm
after high bone turnover that results in dissolution of damaged bone followed by new bone placement.
I have noticed that following P1NP after antiresorptives is unusual.

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@gently, My CTX was 659 with P1NP of 147. I thought that it was an improvement, because it is the best ratio I've ever had. Should I be concerned because my CTX is above 600?

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hi, drsuefowler,
As your ratio is the best ratio to date, and because your CTX has dropped considerably, I'd celebrate.
I'm depending on ratio. Your ratio is within my target. I want a high number of both because I want high turnover.
While I am completely convinced about bone markers and am betting my bones on that conviction, I could be mistaken.
Your April numbers had a very slightly better ratio, but mentioning that would be to quibble.
My prescribing endocrinologist marveled at my P1NP, but ignored the CTX saying that on anabolics CTX doesn't signify anything. I often disagree silently. It's really good to hear that the medication is working out so well for you.

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Profile picture for gently @gently

hi, drsuefowler,
As your ratio is the best ratio to date, and because your CTX has dropped considerably, I'd celebrate.
I'm depending on ratio. Your ratio is within my target. I want a high number of both because I want high turnover.
While I am completely convinced about bone markers and am betting my bones on that conviction, I could be mistaken.
Your April numbers had a very slightly better ratio, but mentioning that would be to quibble.
My prescribing endocrinologist marveled at my P1NP, but ignored the CTX saying that on anabolics CTX doesn't signify anything. I often disagree silently. It's really good to hear that the medication is working out so well for you.

Jump to this post

@gently Thanks

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Profile picture for awesomemomx2 @awesomemomx2

On January 2025 after 2.5 years on Prolia. (5 Shots). Started my transition off and switched to alendronate acid (Fosamax). I have done CTX testing every 3 months since then. My CTX has slowly but steadily been climbing and is now at 225. It climbed my about 20 points in the each of the first 3 month to taking a almost 40 point increase in the last 3. In Grassi et.al study found it should stay at below 212 if BMD was not going to diminish. Would be time for Zoledronate acid? It would appear to me I would be at a point that additional considerations need to be discussed. I have handled the Alendronate well. I exercise regularly including weights and have an overall good handle on my diet using supplementation. I have had a very high 24 hour calcium number in the past of as high as 456 in Dec. 24 which as dropped to 267 in Sept 2025. This seemed to be more of a concern of mine than my physicians, however. I will have another DEXA in January and another CTX. That will be the 1 year marker since coming off Prolia. Besides Grassi et al article “Zoledronate after Denosumab Discontiuation: Is Repeated Administrations More effective than a Single Infusion” I would suggest reading Lamy et.al “Denosumab for osteoporosis treatment : when, how, for whom, and for how long. A pragmatic approach. From the journal entitled Aging Clinicial and Experimental Research published 2025. Ladies, I would appreciate your feedback on your thoughts about my next right step. Thank you

Jump to this post

@awesomemomx2
Do you have to go on to other meds if you get off Prolia shots? I just wanted to get off of them since I've been having bad pain in both legs and my right hip since April of this year. Started on Lyrica a couple of months ago as Tylenol or other pain meds didn't help. Can't hardly stand on my legs when I get up in the morning. I contribute that to the Prolia shots, even though my daughter doesn't agree with me. I read the side effects and that's what I think! Please let me know about taking other meds after you get off of the Prolia. Thanks
Joan

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Profile picture for janetroberson1 @janetroberson1

I have been on Prolia for 15 years. The good news is that I went from osteoporosis to osteopenia. The bad news is that I have joint pain which is becoming progressively worse. I'm concerned about discontinuing Prolia. I went off of it for three years. There was no significant change for my forearm, nec, or hip. My spine, however, went from a T score of -2.1 to -2.5. Since resuming Prolia in 2019, the spine T is -1.8. I asked my endocrinologist if Prolia was the best prescription for me and she wouldn't consider other options. I'm going to see a new orthopedic doctor soon and will ask for his opinion. I can't tolerate the joint pain any longer. Has anyone else experienced increasing joint pain with Prolia? With other medications for bone loss?

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@janetroberson1
Hi Jane,
I have only had 3 Prolia shots starting last year, but want to discontinue them since I've had bad pain in both legs since April. I can hardly stand on them in the morning and started taking Lyrica for the pain. It helps some, but need to get off of the Lyrica. My daughter says pain isn't from the Prolia shots, but I can't get any relief from the pain. My hip is also starting to bother me more and I think I will need a replacement before long. Sounds like I have to take some other meds if I get off the Prolia. I was hoping I could just stop the shots. When I first saw this doctor, he said I couldn't take the other pills because of my thyroid and kidney problems. We'll see when I see him next time. He's referring me back to my pain management doctor for additional shots in my back since he reviewed my dexascan. Wish I could just get off of it and not take any additional meds. He said something about getting an IV medicine at the hospital next year. We'll see what happens. Just need something to get rid of this leg and hip pain!

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Profile picture for jcking1938 @jcking1938

@awesomemomx2
Do you have to go on to other meds if you get off Prolia shots? I just wanted to get off of them since I've been having bad pain in both legs and my right hip since April of this year. Started on Lyrica a couple of months ago as Tylenol or other pain meds didn't help. Can't hardly stand on my legs when I get up in the morning. I contribute that to the Prolia shots, even though my daughter doesn't agree with me. I read the side effects and that's what I think! Please let me know about taking other meds after you get off of the Prolia. Thanks
Joan

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@jcking1938
Hi, My husband and I saw our doc yesterday and said George wanted to stop Prolia after one injection. The doc was not happy insisting he needed it for Osteoporosis. But she said the rebound would not be a problem until after 2 shots. She strongly suggested he at least take a bisphosphonate pill weekly. They are less likely to cause ONJ. But George said no because of esophical issues including a hiatal hernia. She dismissed this concern. However reputable studies through Pubmed and NIH say pills not recommended for those with hiatal hernias. Very serious side effects. George is 80 and values the quality of life he enjoys. Despite our doctor’s disapproval, he will stop medications. Whatever decision we all make, there are pros and cons. We need to listen to our doctors, weigh our options, check reputable sites, talk to our dentists
( There we heard a very different story about the “rare” side effects of ONJ.), and then do what we feel most comfortable with. We also need to consider our age and how we want our golden years to be.

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Profile picture for yellowbrd @yellowbrd

Thank you for responding. Yes, there is a Dr involved. They are in an arthritis Clinic that Cigna insurance approved. I am seeing my Primary Dr. tomorrow morning and will share what I have learned so far. Even the paperwork that comes with Prolia says constipation is a possible side effect. Ugh!

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@yellowbrd, what did you decide to do. I trust you are well.

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Profile picture for lifeisgood4me @lifeisgood4me

@awesomemomx2 I had posted my situation earlier as I had 4 shots of Prolia with the last one a year ago. I met with endo doc who I asked for ctx and other tests but she declined because I chose not to go on another pharmaceutical drug for osteoporosis . I will see my GP in 2 months and discuss, but so far no issues but know I have a way to go. So many things these doctors do not know about osteoporosis as far as things like not using same facility for your department scan, I was never informed that it's apples to oranges if you did not use same for another scan, also was never told my osteoarthritis in spine and neck could make my dexa look better than it is and that I should have a Rems scan not dexa. Never mention the hit on immune system either which caused much if the side effects. As one doctor I heard said osteoporosis is an epidemic and no good treatment nor enough resources or research. Very disheartening for us. One day at a time.

Jump to this post

@lifeisgood4me . I would be really concerned about rebound and the probability of sustaining a fracture if you did nothing after stopping Prolia, especially if you have fractured in the past which I had. You can get CTX testing on your own. I did and used the lab called Ultalabs. You may want to consider doing that.

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