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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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HugInterested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.
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How much do you pay for your your once a week Alendronate prescription?
How are you doing now. I will be relaying off one dose of Prolia soon with Fosamax. Hopefully no issues and I can stop without being on too long and just focus on exercise and diet.
After 5 years on Alendronate and 5 years on Prolia, I do not see improvement.
What is a good follow-up med? Reclast?
Cheesegrits
Hi lissee,
I am doing fine, thank you! It is good that you have not been on Prolia for long before relaying off. I have read that there should not be any rebound effect with just 1 dose of Prolia but it is not a guarantee and each one is different. If you decide not to relay off with any med, you should at least monitor your CTX very closely to ensure there is no spike in bone turnover activity. Or if you decide to be more conservative and take Alendronate for a short period as gently has suggested, it is still advisable to monitor your CTX to ensure that the Alendronate is effective in suppressing any rebound effect. All the best
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1 ReactionI will be having my infusion of RECLAST in January. I have found an endo now. My CTX was at < 50 at the end of 5th month after the 4th injection. It was still there when I had a CTx done 10 days after the 6 month mark after my 4th injection. Then since I had no endo I had my 5th injection. Since my CTX is so low and was so low even after the 6 month interval. I am concerned about having the right timing to get the RECLASt infusion . I have read that if your osteoclasts have not begun to start increasing that the Reclast infusion will not work . Is that everyone else's understanding as well? The question is what is the right CTX level at which to make sure thatReclast can be effective, and to make sure you are at level ? Timing is everything. I have not seen anything in the literature and am wondering if anyone has any other information about this. Any help would be appreciated.
@cheesegrits, sorry to hear that you have not had positive results with your meds. Personally, I have doubts about the effectiveness of anti-resorptives to build strong bones but that's another discussion.
You should confirm with your doctor but I have read that once you have taken 4 or more shots of Prolia, Alendronate may not be potent enough to suppress any rebound effect and the usual recommendation is to use Reclast as the relay drug - with close monitoring of bone turnover markers esp CTX
@mmwagner46 I pay around $20 for a box of 4 x 70mg (1 month's worth)
thanks.
I found this article as I was trying to find what level the CTX should be before getting the ReClast infusion. Zoledronate After Denosumab Discontinuation: Is Repeated Administrations More Effective Than Single Infusion? | The Journal of Clinical Endocrinology & Metabolism | Oxford Academic
https://academic.oup.com/jcem/article/109/10/e1817/7645059. I think it is a very important read.
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5 ReactionsJust sharing my experience with RECLAST infusion. I had my DEXA Scan in Nov 2023 and since the result showed drastic thinning of bone density, I was advised to have the infusion. I took it the following month Dec. two weeks I had it done (first time), after less than 2 weeks my supposedly mild osteoarthritis on the left knee swelled and I could not even walk and it hurts when I put my weight on it. Although the swelling is gone (but still have a mild inflammation) now to date (Sep 2024) 9 months, I am still experiencing the pain/achiness and the inflammation has not really gone away. I am 65 years old and never had any problems with my arthritis. I Have always been active and always on the go until I had Reclast. I hear you ladies— and also feel your concern regarding the meds and treatment.
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