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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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@gravity3 what does your DEXA score tell you since you have been on Prolia?
@rjd
I have my next one tomorrow. But I am not sure what you are asking
@gravity3 good timing with a DEXA tomorrow. Asked only to learn whether the Evenity gains are actually maintained. How much longer do you have on Prolia before switching to Reclast?
@rjd
I'm meeting with my endocrinologist tomorrow. I'll share later. I love learning from everyone.
@dma053
I am currently on Alendronate and have been since stopping the Prolia.
@rjd
In your comment you say " Alas, I did to go to medical school" . Can you clarify. I believe you meant to say I did not go to medical school. I just want to clarify, please. I chose to go on Alendronate initially rather than going on ReClast or Zoledronic Acid because I read resource articles , info from the connect, and Dr. M 's book as well information from his consult that your CTX should be at 200 before getting ReClast. I also discussed this my endocrinologist who agreed with that understanding. I had such a low CTX below 50 I figured it would not do any good at the point I discontinued Prolia. I was hoping the Alendronate would keep the CTX in check . Besides no one can say for certain exactly how long the Prolia remains working. And certainly not without doing ongoing CTX testing. Unfortunately, I have no idea how long it was at below 50. Now I am having a tooth and jaw issue so I am very concerned, especially since my CTX was below 50 and I don't know for how long. Even though my CTX is above 200 now, I did not want to complicate my mouth issue by going on ReClast. Consequently I am in a holding pattern with the current regimen. FYI, I do use Dr. M's collagen with Fortibone regularly whether or not it is helping I can not say. I hope so. I agree that it is important that we all continue to share info. It is really impactful.
@awesomemomx2
Alas, the typo is the reward I get for my attempt at humor. To clarify: I did NOT go to med school.....and cannot figure out how to go into my posting to edit.
If I was concerned about current dental issues, I would take the same approach as you....hope the higher range for CTX that McCormick articulates provides you with some assurance for now. Please let us know how things are going as you approach your Jan DEXA.
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1 Reaction@gravity3
Perhaps I'm wrong about the Prolia being for lifetime then. Best of luck on the Reclast. I'm going to look at that and Evenity since that worked so well for you!
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1 Reaction@dma053
You are not wrong about it being described that Prolia is for life but I believe that that is the way some doctors described their concern with the rebound risk of stopping Prolia.
There was a poster here named WindyShores, very knowledgeable and prolific, whose doctors would not prescribe Prolia for this reason. Check out her postings in the Archives if you want more info.
From what she said and what I remember....if you are in your 80s going on Prolia 'for life' is reasonable but if you are younger, 'life' will likely be much longer....perhaps too long.
I stopped Prolia after my 2nd and last injection in Dec 2022 and took Fosomax to counter rebound. I am now past the rebound period (and hope that means something). but my recent Dexa score indicates I may have lost all the nice density gains made on Prolia. I say 'may' have lost because I have some concerns about how the Dexa scan was taken.
I have also seen several posts recently from those taking Prolia only once or twice to 'lock in' gains from other meds.
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1 ReactionFacing a choice. Please help. Just had new dexa results with gains in spine and femoral neck.
Ive taken Prolia twice as a means to retain great results of evenity. In the past I have taken alendronate for 3 years prior to forteo, forteo for 2, another 2 years is alendronate then 1 year of evenity. I am also in bhrt
My endocrinologist is suggesting one of two paths:
1/2 dose of zolendronic acid(I wanted 1/2 dose of reclast but a 1/2 dose is only available in infusion center and that would be the zolendronic acid), monitor for bone turnover with ctx and dexa and hope that the bhrt will help stave off osteoclast ramp up (Prolia rebound)
Second choice is remain on prolia. I do have some leg pain that has developed slowly after 2nd Prolia shot. Hard to tell if pain is due to my 77 year old body or Prolia.
Thoughts, ideas would be most welcome.