Support For Those Quitting Prolia

Posted by formisc @formisc, Feb 13, 2024

I wanted to start this Discussion as a support thread for those who have already decided to quit Prolia and are in the process of transitioning out of Prolia to share our knowledge, thoughts, decisions and experiences as i had difficulty finding such posts from the various other Prolia threads. Those who have already completed their transition from Prolia are most welcome to contribute their experience.

It would help if you could include some basic info such as TScores, BTMs if available, number of Prolia injections taken, what med you transitioned to, length of time on relay drug and any feedback on effectiveness/reaction to the relay drug.

To prevent overlap with other Discussions already on this forum, the reasons for quitting Prolia need not be raised and it will be assumed that you have already done your research and made your decision. It is hoped that this Discussion will focus more on any feedback/advice that can assist in the transitioning process i.e. not on the 'Why' (quit Prolia) but more on the 'How' (to manage the transition).

Maybe i can start.

Background:
My TScores from my 1st DXA scan in May 2022 were:
Lumbar Spine -1.3
Femoral Neck -2.7
Total Hip -3.0
Unfortunately, my PCP did not order any BTMs so i do not have any baseline numbers.

My 1st Prolia shot was in July 2022, 2nd in Jan 2023 and my 3rd in July 2023.

In Dec 2023 after 18 months on Prolia, i did my 2nd DXA and the results were:
Lumbar Spine -1.1
Femoral Neck -2.6

I decided to quit Prolia before the 4th shot and started on weekly Alendronate in Jan 2024. To date, i have taken 7 Alendronate tablets.

Feedback on Alendronate:
The relay drugs most often cited are Reclast (most frequent) and Alendronate. Alendronate is not recommended for those with esophagus issues as it can irritate and damage the digestive tract.

I decided on Alendronate instead of Reclast as i was wary of taking in a full 1 year's dose of meds in one go and also because i read that the timing of the Reclast infusion can be tricky and the wrong timing may necessitate additional infusions. With Alendronate being a smaller weekly dose, the timing is not really an issue provided there is no delay in starting it at the time the Prolia shot is due.

The 2 days after the first Alendronate tablet and also after the 3rd tablet, i had a bit of stomach pain which went away after i took Veragel. From the 4th week to the 7th week, i have had an achy feeling at the side of my left knee. More surprisingly, i had 3 episodes of tinnitus after my 6th tablet, something which i have not experienced for a long time.

All the above side-effects have been bearable so i will continue with the Alendronate. I pray for the side-effects to cease as i do not want to go on Reclast and i read that Actonel is not potent enough to mitigate the rebound effect.

I plan to do a BTM test in Mar 2024 and quarterly thereafter for the 1st year and a DXA at the end of the 1st year. Depending on the results, i may stop the Alendronate or perhaps go on half-dosage for another 6 months instead of stopping cold turkey. Will also do a BTM at 18 months and a BTM cum DXA at 24 months of Alendronate as the rebound window supposedly stretches over 30 months from the last Prolia shot.

Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.

Profile picture for vagirl57 @vagirl57

@blueberre No, I would have never started it. I recently stopped taking Prolia after 1 injection. I'm thinking about asking my internist for a referral to an endocrinologist. I'm willing to try Fosamax again to help with bone rebound. Before Prolia, I had 3 years of Reclast with way too many side effects and little or no gain. I stopped taking Fosamax 20 years ago because of gastric issues. Now doing resistance training. My bone specialist says I don't need another DEXA if I'm not taking the medicine. I get more info on this forum. Appreciate others posting good resources like the NIH and top hospitals' reports on osteoporosis.

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@vagirl57 what type of medical provider is your 'bone specialist' (the one saying you do not need a DEXA) if you are considering an endo referral request?

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He's an excellent rheumatologist. Just not a people person.

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I'm transitioning off Prolia after 4 1/2 years, due to unpleasant side effects, etc. Like many, I wish I would have educated myself in the first place about these meds. Never knew about rebound effects. Now I feel stuck. Even the bisphosphonates don't seem desirable since they stay in your system for many years. I never had any tests for CTX and P1NP markers; didn't know about so much of this until I made the decision to not get another Prolia shot. Started educating myself a few months ago, but there is an overwhelming amount of information. The more you read, the more there is to learn. My next Prolia shot is scheduled for Jan. 14.
Has anyone used BHRT when transitioning off Prolia? (I'm 65).
Does anyone have input about long term effects of bisphosphonates after Prolia?
I began taking K2; also Fortibone; and am committed to strength training, etc. but feel that after 4 1/2 yrs. of Prolia this will probably not be enough.

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I am posting (belatedly) the results of my sixth BTM blood test done in Sep 2025 after 21 months of Alendronate following cessation of Prolia.

To recap - I did 3 half-yearly Prolia injections in Jul 2022, Jan 2023 and July 2023 and started on Alendronate at end-Dec 2023. Earlier, I did 4 bone turnover marker (BTM) tests in 2024; in Mar, May, Sep and Dec and 1 in April 2025. I do not have any baseline BTM numbers.

As per my opening post, I am sharing my Sep 2025 BTM results (with earlier results in parentheses) in case it proves useful to anyone else monitoring their own exit from Prolia

CTX 128 pg/mL (Apr 25: 74; Dec 24: < 50; Sep: 54; May: < 50; Mar: 51)[range 171-970]

iPTH 3.4 pmol/L (Apr 25: 3.9; Dec 24: 4.9; Sep: 4.4; May: 3.2; Mar: 3.5)[range 1.6-6.9]

Calcium (corrected) 8.7 mg/dL (Apr 25: 8.7; Dec 24: 8.7; Sep: 9.1; May: 8.7; Mar: 8.3)[range 8.8-10.2]

Albumin 4.1 g/dL (Apr 25: 4.2; Dec 24: 4.3; Sep: 3.9; May: 4.1; Mar: 4.1)[range 3.5-5.0]

I took Alendronate on a weekly basis the whole of 2024 as a precaution against any possible rebound. As my CTX was consistently low, I moved to bi-weekly dosage in Jan 2025 and then tri-weekly from Feb to Apr 2025. After my Apr 2025 BTM, I continued tri-weekly for May and Jun 2025 before moving to monthly from Jul 2025. As a result, my CTX has shown a marked increase over the last 2 BTMs although it is still relatively low.

As of today (4 Jan 2026), i have in theory passed the rebound "danger zone" of 30 months from my last Prolia injection in Jul 2023. I am due for another BTM over the next couple of weeks and will continue to update here

Best wishes to all and Happy New Year!

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Profile picture for formisc @formisc

I am posting (belatedly) the results of my sixth BTM blood test done in Sep 2025 after 21 months of Alendronate following cessation of Prolia.

To recap - I did 3 half-yearly Prolia injections in Jul 2022, Jan 2023 and July 2023 and started on Alendronate at end-Dec 2023. Earlier, I did 4 bone turnover marker (BTM) tests in 2024; in Mar, May, Sep and Dec and 1 in April 2025. I do not have any baseline BTM numbers.

As per my opening post, I am sharing my Sep 2025 BTM results (with earlier results in parentheses) in case it proves useful to anyone else monitoring their own exit from Prolia

CTX 128 pg/mL (Apr 25: 74; Dec 24: < 50; Sep: 54; May: < 50; Mar: 51)[range 171-970]

iPTH 3.4 pmol/L (Apr 25: 3.9; Dec 24: 4.9; Sep: 4.4; May: 3.2; Mar: 3.5)[range 1.6-6.9]

Calcium (corrected) 8.7 mg/dL (Apr 25: 8.7; Dec 24: 8.7; Sep: 9.1; May: 8.7; Mar: 8.3)[range 8.8-10.2]

Albumin 4.1 g/dL (Apr 25: 4.2; Dec 24: 4.3; Sep: 3.9; May: 4.1; Mar: 4.1)[range 3.5-5.0]

I took Alendronate on a weekly basis the whole of 2024 as a precaution against any possible rebound. As my CTX was consistently low, I moved to bi-weekly dosage in Jan 2025 and then tri-weekly from Feb to Apr 2025. After my Apr 2025 BTM, I continued tri-weekly for May and Jun 2025 before moving to monthly from Jul 2025. As a result, my CTX has shown a marked increase over the last 2 BTMs although it is still relatively low.

As of today (4 Jan 2026), i have in theory passed the rebound "danger zone" of 30 months from my last Prolia injection in Jul 2023. I am due for another BTM over the next couple of weeks and will continue to update here

Best wishes to all and Happy New Year!

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@formisc

Thank you. This is very helpful.

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Profile picture for formisc @formisc

I am posting (belatedly) the results of my sixth BTM blood test done in Sep 2025 after 21 months of Alendronate following cessation of Prolia.

To recap - I did 3 half-yearly Prolia injections in Jul 2022, Jan 2023 and July 2023 and started on Alendronate at end-Dec 2023. Earlier, I did 4 bone turnover marker (BTM) tests in 2024; in Mar, May, Sep and Dec and 1 in April 2025. I do not have any baseline BTM numbers.

As per my opening post, I am sharing my Sep 2025 BTM results (with earlier results in parentheses) in case it proves useful to anyone else monitoring their own exit from Prolia

CTX 128 pg/mL (Apr 25: 74; Dec 24: < 50; Sep: 54; May: < 50; Mar: 51)[range 171-970]

iPTH 3.4 pmol/L (Apr 25: 3.9; Dec 24: 4.9; Sep: 4.4; May: 3.2; Mar: 3.5)[range 1.6-6.9]

Calcium (corrected) 8.7 mg/dL (Apr 25: 8.7; Dec 24: 8.7; Sep: 9.1; May: 8.7; Mar: 8.3)[range 8.8-10.2]

Albumin 4.1 g/dL (Apr 25: 4.2; Dec 24: 4.3; Sep: 3.9; May: 4.1; Mar: 4.1)[range 3.5-5.0]

I took Alendronate on a weekly basis the whole of 2024 as a precaution against any possible rebound. As my CTX was consistently low, I moved to bi-weekly dosage in Jan 2025 and then tri-weekly from Feb to Apr 2025. After my Apr 2025 BTM, I continued tri-weekly for May and Jun 2025 before moving to monthly from Jul 2025. As a result, my CTX has shown a marked increase over the last 2 BTMs although it is still relatively low.

As of today (4 Jan 2026), i have in theory passed the rebound "danger zone" of 30 months from my last Prolia injection in Jul 2023. I am due for another BTM over the next couple of weeks and will continue to update here

Best wishes to all and Happy New Year!

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@formisc good news about your biomarkers. When was your last DEXA and when is your next one?
Again, thanx for starting this thread. I am certain it helped many people quitting Prolia, including me. But for me, I did not save the BMD increase from Prolia and according to my last DEXA, I am pretty much the same as pre-Prolia.
The biggest difference in the time between the DEXAs is that thanx to Connect, I am far more informed and therefore feel more rational. After the first BMD results, I felt panicked and pushed by my doctor to take meds (prolia.)
Good to hear from you @formisc.

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Profile picture for rjd @rjd

@formisc good news about your biomarkers. When was your last DEXA and when is your next one?
Again, thanx for starting this thread. I am certain it helped many people quitting Prolia, including me. But for me, I did not save the BMD increase from Prolia and according to my last DEXA, I am pretty much the same as pre-Prolia.
The biggest difference in the time between the DEXAs is that thanx to Connect, I am far more informed and therefore feel more rational. After the first BMD results, I felt panicked and pushed by my doctor to take meds (prolia.)
Good to hear from you @formisc.

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@rjd thanks for all your sharing. my last DEXA was in Jan 2025. I will prob aim to do my next one by June this year - i have some other scans due and do not want to bunch them together if possible. Will update once i have the results

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What is anyone doing to deal with the severe pain in ankles up to thigh from adverse effect from Prolia and generic?

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I have severe scoliosis, fibromyalgia, & multiple autoimmune disorders & I'm past osteopenia. Doctors were asking me to start Prolia. I put it off till I had my last appointment with my scoliosis doctor who again told me I needed to start it. I had my first injection in July. Not long after that, I started having worse pain in my back & all of my joints. It was horrible. I saw my rheumatologist & asked him if he knew that you can't take Prolia with autoimmune disorders. He acted like it was no big deal. My second injection was scheduled for tomorrow. I cancelled it. So my only answer to your question is to stop Prolia.

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Just an update on my latest (my seventh) CTX blood test done on 10 Jan 2026 approx 30 months after my third and last Prolia on 1 Jul 2023.

CTX 140 pg/mL (Sep 25: 128; Apr 25: 74; Dec 24: < 50; Sep 24: 54; May 24: < 50; Mar 24: 51)[range 171-970]

iPTH 3.9 pmol/L (Sep 25: 3.4; Apr 25: 3.9; Dec 24: 4.9; Sep 24: 4.4; May 24: 3.2; Mar 24: 3.5)[range 1.6-6.9]

Calcium (corrected) 8.8 mg/dL (Sep 25: 8.7; Apr 25: 8.7; Dec 24: 8.7; Sep 24: 9.1; May 24: 8.7; Mar 24: 8.3)[range 8.8-10.2]

Albumin 3.9 g/dL (Sep 25: 4.1; Apr 25: 4.2; Dec 24: 4.3; Sep 24: 3.9; May 24: 4.1; Mar 24: 4.1)[range 3.5-5.0]

My CTX has gone up moderately to 140 (previously 128 in Sep 2025 and 74 in Apr 2025). Quite relieved that the increase has slowed down to a slower pace

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