Support For Those Quitting Prolia

Posted by formisc @formisc, Feb 13, 2024

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.

Profile picture for rknicker @rknicker

After my last Prolia I ended up with AKI and a 3 day hospitalization. Not comfortable continuing Prolia for fear of same reaction. Any thoughts on what the next approach to treatment should be. Also for context, on chemo for Multiple Myeloma which impacts osteoporosis. Thank you!

Jump to this post

@rknicker I can relate as a fellow MM patient with issues tied to Prolia now. Best wishes ❤️

REPLY
Profile picture for gently @gently

rknicker, how many Prolia injections have you had? Is there permanent kidney damage? The usual medication after Prolia to prevent rebound is Reclast which can also cause hypercalcemia. If your use of Prolia has been one year of less, you might fare better with an oral bisphosphonate. https://www.ajmc.com/view/fracture-risk-lowest-for-alendronate-pamidronate-use-during-mm-treatment

Jump to this post

@gently I think you meant hypocalcemia, which is definitely something you have to watch out for on Prolia especially. The low point in blood calcium after a Prolia injection is about 7 days. You have to ensure adequate calcium intake especially on the first few weeks, but also during the entire treatment to help build bone.

REPLY

Did you ever figure out why you were losing calcium on Evenity. Is it something peculiar to you. Are you content to stay on Prolia? for how long? or do you feel trapped.
Yes hypocalcemia prompting the FDA to add the boxed warning to Prolia in 2024. Scary what we didn't know about Prolia when the medication was approved.
Thanks for the correction.
Is it true that you are using bone markers now.

REPLY
Profile picture for gently @gently

Did you ever figure out why you were losing calcium on Evenity. Is it something peculiar to you. Are you content to stay on Prolia? for how long? or do you feel trapped.
Yes hypocalcemia prompting the FDA to add the boxed warning to Prolia in 2024. Scary what we didn't know about Prolia when the medication was approved.
Thanks for the correction.
Is it true that you are using bone markers now.

Jump to this post

@gently

sigh....
Something else to be aware of.....just when I didn't need it. But grateful for the knowledge. Perhaps all of this info is good for the aging gray matter.

REPLY
Please sign in or register to post a reply.