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Support For Those Quitting Prolia
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.
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@rjd I am sorry you lost your gain. I,too, am worried about that. I am anxious to get my Dexa done in January. I too have other health concerns that are big. Take care.
@rjd Margie Bissinger commented the 24 month period begins at the point when you were to have your next shot after the last injection you had. I also read we need to monitor for 30 months. In December it will be a year since stopping . Just 18 more months to watch, right? I am trying to be funny. Once on this journey we need to be vigilant always and take care of ourselves the best we can, don't we? Blessings.
@mkoch Do not know your particulars but I am in general reluctant to base my decisions on anecdotal evidence.
Good luck with Prolia....some people say once you start Prolia you should stay on it for life to avoid the rebound from quitting. But studies of Prolia only go out 10 years.
McCormick does not think alendronate is strong enough to 'stick' the Prolia gains and recommends Reclast. I wish I would have know that when I stopped Prolia but I had a doctor who did not even know about the rebound issue.
As I stated previously, I lack confidence in the DEXA result.
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1 Reaction@awesomemomx2
McCormick recommends Reclast over Fosomax to stick the Prolia density gains. I did not know that at the time. The study I shared with my doctor (who wanted me to quit cold turkey) looked at using either/or to prevent rebound, which was my main concern that needed immediate action.
And as I said, I am not confident about the most recent DEXA result.
If you trust AI, you might find this of interest.
"AI Overview
The rapid bone loss (rebound effect) following Prolia (denosumab) discontinuation was first reported by investigators analyzing data from the original clinical trials in 2011.
However, the specific risk of multiple vertebral fractures associated with this rebound was first described in case reports and clinical studies around 2015 and 2016.
Key findings and dates include:
2011: The initial observation of rapid bone mineral density (BMD) loss and a marked rise in bone turnover markers (BTMs) after stopping denosumab treatment in the FREEDOM trial extension.
2015-2016: The phenomenon of multiple spontaneous vertebral fractures (MVFs) after discontinuation was first described in the medical literature through case series and reports from various countries.
2016: The safety information in the prescribing information for Prolia was updated to include warnings about the risk of MVFs following discontinuation. The American Society for Bone and Mineral Research (ASBMR) also addressed the issue at their 2016 congress.
Since 2017: Numerous studies and case series have continued to confirm and detail the risk of these rebound fractures.
Today, it is a well-recognized safety signal, and clinical guidelines recommend transitioning patients to another anti-osteoporosis therapy, such as a bisphosphonate, after stopping denosumab to mitigate this risk. '
@awesomemomx2
Agree completely about always being vigilant...it is exhausting and I personally prefer to spend my time contemplating more interesting topics. (Like the winter solstice and all the archeological evidence emerging world-wide about how ancient cultures treated this mysterious phenomena.)
24 months sounds about right. Early on in this thread there was a lot of discussion about this 'timing' issue which I seem to remember also included info about the rebound tending to be of most concern during the first 18 months after Prolia. That is why monitoring biomarkers can be helpful....if the CTX does not skyrocket, then you are likely out of the rebound danger zone. But skyrocketing may depend on baseline numbers, which I did not have.
When my CTX seemed stable and not too high or low in absolute terms, I began reducing my Fosomax dosage after about 18 months. With 3 months to go on the 24 months, I stopped the Fosomax.
My understanding is that the effect of Fosomax stays with you for a long time. And the thing I objected to the most about Fosomax is that it coats your bone and makes it more difficult for the osteoclasts to do their essential job in the bone turnover process. I want strong bones not just dense bones. I just resent being the laboratory rat.
I did not lose ALL my Prolia gains... only 2/3 of the gain. I need to get another DEXA and/or REMS. In no big hurry...recent result put me just over the line into osteopenia if that line is actually significant while trying to maintain targeted nutrition and body movements.
Happy holidays to all......
@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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1 Reaction@rjd Yes, he does, however if your CTX is too low( he recommended to me after a consult a CTX
of 200) reclast will not adhere to the bone and be ineffective. Thus, CTXs being done regularly. . Mine was very low at one time ( less than 50) which is not good either according to Dr. M. As we say we need to be vigilant, researching, and helping each other.
@rjd I agree🫂
@vagirl57
Have you ever taken an anabolic?