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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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Not as infrequent as you may think.
Definitely have a serious consult with your dentist.
I think mild jaw issues aren’t reported. I had all my dental work completed before starting Prolia.
After 4 years I have recently stopped because of joint pain that was painful but what really made up my mind was jaw soreness.
So talk with your dentist he knows your oral bones best.
Nice thinking.
@joann1941 I hope your doctor will consider Reclast, as @formisc suggested, which is stronger than Fosamax in avoiding rebound from stopping Prolia. If you have a hernia or GERD Reclast has the added benefit of not passing through the esophagus and GI tract.
I just got my 9th Prolia shot, and I got a half dose of 30mg and will check CTX in 2 mos. I'm hoping this will be a way to wean off completely, or at least reduce my risk of adverse side effects of AFF and ONJ.
Has anyone been able to get this whole study ?
Denosumab Discontinuation.
Sølling AS, Tsourdi E, Harsløf T, Langdahl BL.
Curr Osteoporos Rep. 2023 Feb;21(1):95-103. doi: 10.1007/s11914-022-00771-6. Epub 2022 Dec 24.
PMID: 36564572 Review. The abstract looks like it would be an important read, but does not appear to be available to the public.
I am really am looking for an answer about the best timing for taking zoledronic acid (Reclast) after having your last Prolia injection. My CTX score was at < 50 at the 5th month mark and still below 50 after the 10th day mark past my 6th month before having the 5th Prolia injection. Dr. McCormick recommends to do it only when you CTX begins to climb. What has everyone’s experience been?
I have received the results of my third BTM blood test done in early Sep 2024 after 36 weeks of Alendronate following cessation of Prolia.
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 after 10 weeks of Alendronate and my second BTM was in end-May after 22 weeks of Alendronate. 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 54 pg/mL (May: < 50; Mar: 51)[range 171-970]
iPTH 4.4 pmol/L (May: 3.2; Mar: 3.5)[range 1.6-6.9]
Calcium (corrected) 9.1 mg/dL (May: 8.7; Mar: 8.3)[range 8.8-10.2]
Albumin 3.9 g/dL (May: 4.1; Mar: 4.1)[range 3.5-5.0]
Vit D 46.7 ng/mL (May: 43.3; Mar: 42)[range 30.0-99.9]
My CTX remains low. Am in fact, a bit relieved that it now again has a reading and is no longer the mysterious, numberless '< 50' ! Both calcium and Vit D have continued to increase since i upped my daily supplemental intake to around 900mg of calcium and 2000 IU of D3. iPTH has gone up too while albumin has decreased
Any insight or comments on the above numbers is very welcome
Thanks, @formisc. Your readings are encouraging. Saved by alendronate; it really held the osteoclasts down effectively. Are you still planning Forteo or Tymlos. I'll be curious to see the next dxa.
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1 ReactionMy integrative medicine doctor informed me that K2 should be taken with D3. I believe it’s for better absorption, but you should look it up.
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2 ReactionsThanks for the supportive words, gently. No, I don't think I would be in a hurry to go onto Forteo, Tymlos or any other osteo med after my scare with Prolia. In any case, my current priority is to cease all anti-resorptives and that would take at least another year. My plan is to continue weekly Alendronate till end-Dec 2024; take another BTM and then move to fortnightly Alendronate for 6 months and perhaps followed by monthly Alendronate for another 6 months before stopping altogether at end-Dec 2025. Throughout this period, I will have to rely on my BTM tests to alert me to any possible rebound effect
@cmdw2600
Thank you. Yes, I am taking 180mcg K2 (MK7) daily together with the 2000 IU D3
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