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 gravity3 @gravity3

@teardrop

So sorry that you have both been through so much.
How are your spine scores at this point. I ask only because a number of people here have talked about how good the anabolic Tymlos is for the spine.

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@gravity3
My last dexa scan was in 2024 and it was -2.0 spine T score and -.8 hip T score. This is because of the ten years of Prolia. It isn't going to mean much now that I am off prolia as my numbers are going to plummet, but my next dexa is not until August. At this moment in time I would not qualify for Tymlos.

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Just an update that I received a Reclast infusion today. Insurance denied the appeal for my prolia shot so my doctor decided to have me go this route to mitigate the effects of coming off Prolia after 11 years. My last Prolia shot was about seven plus months ago. I was due for a dexa scan in August but am considering asking if I can cancel that one and schedule it for the following February to give this drug a chance to see if it is working to at least stop or slow bone loss from coming off Prolia. I will update later as I go through this transition journey.

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Profile picture for rjd @rjd

@awesomemomx2
We are all try but due diligence is often not enough in this arena. It seems to me that, given all the variables, medical judgment is required and that means focused education and experience. Most PCPs and many specialists simply are not that committed to this medical condition. And alas, I did to go to medical school.

It is why I like Dr. M. He has been at this a long time and he learned it because he was personally impacted...greatly. His books are impressively annotated and written in an accessible manner.

Admittedly he has created a good business with this knowledge and experience. I weigh this against my personal dislike of all the hucksters involved with osteoporosis....the 'Dr's who have no medical degrees but instead, for example, a PhD in anthropology, or the physical therapists who somehow have 'doctoral' degrees the basis for which I still cannot figure out.

So when push comes to shove, I rely on Dr. M's Great Bones. So I am wondering whether you have found helpful his info about biomarkers? And has this impacted your present approach?

Who advised you to go on Alendronate post-prolia v Reclast because of your CTX score? And did that same practitioner also advise about switching to Reclast at some point when indicated by CTX numbers?

My personal concern is my hips not my spine, which is normal (at least what can be read, apparently there is osteoarthritis at some places and this fools you into thinking it is density) so I do not know whether my current approach and understandings will be helpful to you. Your last DEXA score was not too bad and you have another coming up soon.

My sense is that biomarkers are best used to help know whether treatment is working in between DEXA scans. Like you, I am in a position of looking at CTX numbers more for diagnostic purposes.....should I go back on Alondrenate with a hip DEXA of -2.6?

Right now I am choosing to go on a drug holiday because my CTX and P1NP are within guideline that Dr. M likes. I am also thinking if I need medication, I would prefer to look at anabólics and give them a good chance without the influences of bisphonates.

I am also upping my game on nutrition and supps (the collagen I have started has resulted in phenomenal benefits to my 75 year old skin but have no idea yet what its impact might be on my osteoporosis) AND targeted exercise. I am also considering taking a REMs. I am not a good candidate for HRT but if I was I would be looking closely at this alternative.

Meanwhile, I have a potentially serious medical condition that still needs sorting out..... lots of tests, potential tests, and opinions. Takes lots of time and energy.

Good luck and please continue to share your thinking on how you approach your situation. It is helpful to all of us.

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@rjd I am new to this site but have been reading several replies with you, @windyshores and @formisc. I had my first Prolia shot in June, 2025 with my Endocrinologist, after being on Alendronate for 2 1/2 years prior. I wasn't told about any of the side effects, just that it was an injection every 6 months. I thought, that would be great instead of taking Alendronate every week. A few days after receiving the shot, I started getting pains in my right thigh/hip area and thought it was due to getting ready for a family reunion 5 days later. Well, come the day we left, I couldn't even put weight on my right side, and the pain was getting worst and could barely walk. I was trying to figure out what I had done differently to cause such pain. Then remembered the shot so I pulled it up on phone during travel, and sure enough, thigh pain was the first thing that I saw as a side effect. So, come December, when I was to get my 2nd shot, I told them I didn't want to continue with Prolia, so she put me back on Alendronate. With all this turmoil, I ended up finding a new Endo Dr. and she told me stop taking the Alendronate.

Now, I'm concerned about rebound with not being on anything now. With asking questions on other websites of 2 1/2 yrs on Alendronate, 1 shot of Prolia, back on Alendronate for 1 month and then not taking anything since January 2026, it looks like I'll be okay but I'm still scared. Any insight you have would be appreciated. Thanks in advance!

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Profile picture for harleysweet64 @harleysweet64

@rjd I am new to this site but have been reading several replies with you, @windyshores and @formisc. I had my first Prolia shot in June, 2025 with my Endocrinologist, after being on Alendronate for 2 1/2 years prior. I wasn't told about any of the side effects, just that it was an injection every 6 months. I thought, that would be great instead of taking Alendronate every week. A few days after receiving the shot, I started getting pains in my right thigh/hip area and thought it was due to getting ready for a family reunion 5 days later. Well, come the day we left, I couldn't even put weight on my right side, and the pain was getting worst and could barely walk. I was trying to figure out what I had done differently to cause such pain. Then remembered the shot so I pulled it up on phone during travel, and sure enough, thigh pain was the first thing that I saw as a side effect. So, come December, when I was to get my 2nd shot, I told them I didn't want to continue with Prolia, so she put me back on Alendronate. With all this turmoil, I ended up finding a new Endo Dr. and she told me stop taking the Alendronate.

Now, I'm concerned about rebound with not being on anything now. With asking questions on other websites of 2 1/2 yrs on Alendronate, 1 shot of Prolia, back on Alendronate for 1 month and then not taking anything since January 2026, it looks like I'll be okay but I'm still scared. Any insight you have would be appreciated. Thanks in advance!

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@harleysweet64
@harleysweet64
By putting you back on alendronate, your first endo appears to have followed protocol at the time of stopping Prolia after only one injection. What did the second endo tell you when h/she recommended stopping the follow-up alendronate? Were you still having hip pain? What Dexa scores are involved?

McCormick says in Good Bones that the CTX biomarker should be taken when Prolia is stopped and then again every couple of months while on alendronate to monitor whether its use is sufficient to avoid the rebound effect or whether a more powerful bisphosphonate like Reclast should be used.

There is no way to know your response to only one Prolia injection.....by this I mean how rigorously your body reduced osteoclast activity. The general rule per McCormick is that the more rigorously your osteoclasts are suppressed by Prolia, the more likely the rebound will be pronounced when you stop Prolia. Even without a baseline, it might make sense to do a CTX now to address your concern.

Is there something now that makes you question the second endo's recommendation in January to stop alendronate?

In any event, I do hope you have incorporated into your life dietary changes and targeted exercise known to help with osteoporosis.

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Due to severe side effects took only one shot and my Dr said not to get another but to increase calcim and Vit D
I am very sensitive to meds and my dr has me take half dose of other meds which works fine, but this is not the case with prolia

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Profile picture for jdh5 @jdh5

Due to severe side effects took only one shot and my Dr said not to get another but to increase calcim and Vit D
I am very sensitive to meds and my dr has me take half dose of other meds which works fine, but this is not the case with prolia

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@jdh5
I only have osteopenia. My T-score on lumbar spine went from -1.2 in 2024 to -0.2 in January, 2026 so I'm assuming it was due to the 1 shot of Prolia?? I just don't want to lose what I gained but also didn't want to continue with Prolia, due to the side effects. I broke my back in an accident in 1981 and had 3 in. of my hip bone fused into my back, so I've always been concerned and cautious with anything to do with my back. And with my age, I'm starting to feel all the aches and pains. Also, all the different comments of those who have stopped Prolia, just scares me. But I'm a worry wart so that doesn't help. And I thought retirement would be carefree, lol.

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I asked my Dr re rebound effect with 1 shot and she said i shot would not cause a rebound. As you saw by my email, the side effects were not good as very sensitive to meds. I have a lot of anxiety so the side effects made that worse.

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Profile picture for jdh5 @jdh5

I asked my Dr re rebound effect with 1 shot and she said i shot would not cause a rebound. As you saw by my email, the side effects were not good as very sensitive to meds. I have a lot of anxiety so the side effects made that worse.

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@jdh5
Thank you for all your replies and getting information from your doctor. I hope you get better and wish you good health. Appreciate ya!!!

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