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.

@formisc

I have received the results of my fourth BTM blood test done in Dec 2024 after 50 weeks of Alendronate following cessation of Prolia; and my DEXA done in early Jan 2025, 13 months after my previous DEXA in Dec 2023. It's not all good news.

To recap - I did 3 half-yearly Prolia injections in Jul 2022, Jan 2023 and July 2023 and started on Alendronate at end-Dec 2023. My first BTM was in early Mar 2024, my second BTM was in end-May and my third was in Sep after 10, 22 and 36 weeks of Alendronate, respectively. I do not have any baseline BTM numbers. As per my opening post, I am sharing my BTM results in case it proves useful to anyone else monitoring their own exit from Prolia

[CTX]
CTX < 50 pg/mL (Sep: 54; May: < 50; Mar: 51)[range 171-970]
iPTH 4.9 pmol/L (Sep: 4.4; May: 3.2; Mar: 3.5)[range 1.6-6.9]
Calcium (corrected) 8.7 mg/dL (Sep: 9.1; May: 8.7; Mar: 8.3)[range 8.8-10.2]
Albumin 4.3 g/dL (Sep: 3.9; May: 4.1; Mar: 4.1)[range 3.5-5.0]

My CTX remains low and back to the mysterious, numberless '< 50' ! Calcium can afford to go up from its bottom of the range level.

[DEXA]
My TScores from my DEXA scan in Jan 2025 (Dec 2023 numbers in brackets):

Lumbar Spine -0.8 (Dec23:-1.1)
Femoral Neck -2.4 (Dec23:-2.6)
Total Hip -2.5 (Dec23:-2.6)

All DEXA scores have shown slight improvements over the past 13 months with lumbar spine falling below -1.

Now for the bad news.

[SPINAL SCAN]
I took the opportunity to also do a spinal xray scan and the results came back with a "Mild T12 compression fracture"! Was quite shocked and disappointed.

Some questions immediately pop into mind:

1) Having never done a spinal scan before, I don't know if this is an old or new fracture. But, as fractures should heal over a few months, perhaps it is not an old fracture?

2) If it is a recent fracture, could it be caused by the dreaded Prolia Rebound? But my CTX has remained very low throughout the post-Prolia period. And my lumbar BMD numbers are ok. What do others think?

3) I have read that fractures cause CTX to rise, sometimes dramatically. But my CTX has remained low throughout the past 13 months. Is this odd?

4) Should i cut short my post-Prolia relay period to allow CTX to rise to assist in healing?

5) Other than being careful and not aggravating the fracture, what else can I do to assist the healing? Are exercises and/or stretching recommended?

My aim is to cease all anti-resorptives as soon as possible. My original plan was to cease my weekly Alendronate at end-Dec 2024; move to fortnightly Alendronate for 6 months, followed by monthly Alendronate for another 6 months before stopping Alendronate altogether at end-Dec 2025. But, given my continued low CTX, I was planning on being more aggressive and do instead, 3 months biweekly, 3 months triweekly and 3 months monthly and cease by end-Sep 2025. Now, with the fracture, it might be better to shorten it even more.

I will continue to rely on timely BTM tests to alert me to any possible rebound effect

Any insight or comments on the above numbers, questions and/or plan of action is very welcome

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I believe that Keith McCormick said that a CTX under 100 is actually too low, and that micro fractures don't heal with that level of turnover. Maybe someone else can confirm. My CTX was 145 which my endo said showed sufficient suppression of resorption. Is it possible that you have too much suppression of turnover? Can you ask your doctor what the optimal CTX would be in your situation?

Your spine DEXA is excellent so the "mild fracture" is strange. Can you get it checked out further, with an MRI? I have no idea if that would be useful.

Prolia itself can cause fractures due to the suppression of turnover, usually after many years, and we are told that the risk is for atypical femur fracture and jaw necrosis.

Can you ask your doctor if the rise in fracture risk with Prolia rebound is independent of the CTX? Or if Prolia itself can cause fractures?

Hoping it is an x-ray artifact! Your DEXA for spine is so good.....

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