Support For Those Quitting Prolia

Posted by formisc @formisc, Feb 13 10:14pm

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.

@windyshores

@bonana caan you explain the light phototherapy? Is that for your osteoarthritis?

Again if you have serious osteoporosis, I would have expected your endocrinologist to suggest a bone building drug like Forteo, Tymlos or Evenity. Is it possible to get a second opinion?

I try to remember that people with side effects are more likely to post. I have sensitivities to many meds but managed to do Tymlos by starting at a low dose and moving up. This titration helped mitigate side effects for me.

I know that Reclast has caused you a lot of pain. On the other hand, I have fractures and that pain and disability is permanent for me. So I tend to encourage trying meds to avoid fractures. If your DEXA is better than -3.0 or so, then providers like McCormick do suggest a natural approach first.

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Here is some support. I have had a full course of both for two and evenity with no discernable side effects and positive results with both.

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@gravity3

Margaret Martin and the MelioGuide just sent an email about how to stop Prolia safely

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@gravity3 I got that email too. Melio Guide has videos and articles that are so helpful.

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