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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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Thank you for your feedback it gives me a few options to ponder. Out of curiosity I went back and checked my last dexa scan taken May 2024. I was in shock to realize I have now moved to osteopenia category, I guess due to taking Prolia for 6 years? My lumbar spine T score is 0.9 and Z score is 3.0, my total hip T score is -1.1, and Z score is 0.4, my femoral neck T score is -2.3, and my Z score is -0.5. Conclusions indicate osteopenia now and NOT osteoporosis. My guess if is if I go off Prolia those numbers will change quite a bit. I do want to have a CTX blood test to see if I can have dental work in my future, since I am in a holding pattern right now with the two implants. I've never had a CTX blood test, to surprising given the fact that my bone health specialist knew that I was having extensive dental work. My oral surgeon never mentioned it either. Since I'm going to the endocrinologist in early January, I will find out if there's any way I can go off Prolia cold turkey. The bone health specialist wanted me to go on HRT, aka Evista, but I don't really like the side effects that I've read about at all, but I don't want to lose the obvious gains I've made all these years being on Prolia. My only other alternative would be to stay on Prolia and not have the dental work, just have a partial plate made That isn't my first choice, but it might be my safest choice, especially if I would like to transition completely off any drugs. Not easy choices here. I wish I had a crystal ball.
I have no idea @jheieck what your priority is, or how urgent the dental work is. I would ask your doctor if one or 2 Reclasts could be enough to "lock in" your gains and mitigate rebound. Using the CTX to time going on the Reclast so it is effective, and to monitor any rebound effect, would help. But I realize that delaying dental work may be problematic. I don't know the effect of rebound bone loss on dental work either.
There is a study on Evenity after Prolia but I don't think it was much time on Prolia. Maybe someone can retrieve it.
Have you considered a consult with Keith McCormick (osteonaturals.com)?
Did your bone specialist feel Evista was strong enough to combat Prolia rebound? I am surprised. But with your scores I suppose you can afford to lose some density.
I could try a consult. My bone health specialist is out of town this week because I wanted to call her and ask her why she never ordered a CTX blood test for me knowing I was having extensive dental work. She recommended Evista because reclast was her first choice, but when I had the bone erosion after the implants were installed and had to be removed subsequently, she did not feel reclast was safe for me. I don't think anything else besides reclast was considered strong enough for me, but she ruled it out.
@jheieck what a tough spot to be in! McCormick might be helpful-?
I sent an email inquiry.
The worst thing is that I had my last Prolia shot exactly 6 months ago so I don't have much time to make a decision about whether to get the next Prolia shot I think I only have about 3 weeks and I don't see the endocrinologist till January 6th talk about cutting it close
@jheieck that is a lot of pressure but it seems you do have time with your scores.
I wish you could do at least one Reclast.
You can also call McCormick's office and explain your time pressure. Pat is very nice (answers the phone).
I'll wait till January 6th and see what the endocrinologist says and go from there.