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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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Ha! No kidding. I consider the “top doctors in osteoporosis” the doctors that are giving trainings to other doctors at the major osteoporosis conventions like the World Congress of Osteoporosis (WCO). These are the doctors who’s names appear on multiple major clinical trials and studies for osteoporosis medications. Dr. Michael McClung shows up all of the time in these studies and presented at WCO last year and is presenting this year. Same with Serge Ferrari. And Dr. John Bilezikian also teaches doctors from around the world and has exhaustive credentials. Just last year he partnered with Dr. McClung for an event in New Mexico.
Just for fun, here is a partial list for Dr. Bilezikian… Director, Emeritus, of the Metabolic Bone Diseases Program at Columbia University Medical Center; undergraduate training at Harvard College; medical training at the College of Physicians & Surgeons; received his training in Metabolic Bone Diseases and in Endocrinology at the National Institutes of Health in the Mineral Metabolism Branch; served as President of the ASBMR (1995-1996); served as President of the ISCD (1999-2001); served on the Board of Governors of the International Osteoporosis Foundation (1999-2015); Chair of the Endocrine Fellows Foundation; co-editor of The Aging Skeleton (1999), Dynamics of Bone and Cartilage Metabolism (1999, 2006), Principles of Bone Biology (1996, 2002, 2008, 2020) and Osteoporosis in Men (2010). He is Editor-in-Chief of the Primer on the Metabolic Bone Diseases and Disorders of Mineral Metabolism (2019); He has been on numerous panels, including serving as Chair of the NIH Consensus Development Panel on Optimal Calcium Intake (1994), and on and on and on…
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Hug
1 ReactionGood point, let me clarify. Attached a slide in the backup of my presentation that I did not have time to discuss. The content came from this study https://asbmr.onlinelibrary.wiley.com/doi/full/10.1002/jbmr.4335. It has all kinds of nuggets in it.
If you look at the picture, it shows the timing of fractures after stopping Prolia without a bisphosphonate following treatment. It's kind of like cooking popcorn, nothing happens when you press start, then it gets moving pretty good, then it's just a pop once and a while. Perhaps a poor choice of analogies but it fits well.
So yeah, while the study shows out to 30 months, the bulk of the breaks happen in the first 12 to 14 months. And if one did follow Prolia with a bisphosphonate, the feeling is most of the rebound effects would be diminished in about 12 months. That is how I understood the explanation from Dr. Serge Ferrari when I heard it in September 2023.
@michaellavacot did you ever consider Tymlos or Forteo? I had a 20% gain in spine with Tymlos. I am doing a few Evenity's and on to Reclast.
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Hug
1 ReactionCorrection to my last post after re-reading the study. The chart above shows breaks after the last injection of Prolia, which is 6 months before the end of treatment. So on the chart, you can see breaks start to happen right after Prolia treatment (6 months after the last injection). So the majority of the breaks happen in the first 12 months after treatment. Again, this is for no treatment after Prolia, which is a really bad idea. Thanks for pointing this out.
Come on, you're retired. Finding original source material is fun! But I hear you, I hate having to take any drug but sometimes it's a necessary evil. Sometimes you get boxed in a corner. I don't work for or get paid by pharmaceutical companies, but I do enjoy the science behind the drug actions and how they work. It's fascinating. You should get your genome decoded if you really want to be blown away 🙂
Yeah, I considered them. The reason I did not choose those after Evenity was due to my hypercalciuria and also some genetic variants I have. Tymlos and Forteo are PTH analogs and can increase urine calcium. I already have high urine calcium so I figured they too would have reduced efficacy like I had with Evenity, or even worse. Also, I believe I have some genetic variants in the Wnt signaling pathway that could reduce the effect on these types of drugs. So then I was left with Prolia as my only option. I'm being really careful with taking my calcium every day because with Prolia, my body will not be able to take calcium as readily from my bones and if I don't get calcium every day, my blood levels with drop (hypocalcemia) and that's when everything goes sideways. I know the FDA just implemented a black box warning on Prolia for hypocalcemia for kidney patients as well.
It seems to me that this thread has been highjacked with the focus no longer being on supporting those quitting Prolia. How sad for them. Maybe a new thread should be started to cover the new material.
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Hug
6 ReactionsThank you for the encouragement. In most cases, the bisphosphonate used as the relay drug in the study was Reclast so i hope the same results apply to Alendronate which is less potent
It's good that you are comfortable and happy with your experience with Prolia and i wish you success and all the best
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1 ReactionThanks, you as well. Dr. Serge Ferrari had proposed the possibility of using alendronate first after Prolia, watching your CTX values, then moving to Reclast if your CTX jumps past your baseline CTX. The belief is that since alendronate is weekly, it might be better at slowing the rise in CTX as Prolia wears off. No data shown for this yet, but hopefully there will be before I have to transition off Prolia. 🙂
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Hug
1 ReactionHi rjd,
No, i do not have specific numbers but i did not want to say there was "no" or "little" risk or that there was "high" or "huge" risk - to me, "significant" was the right level. There are several studies showing the link between prolonged use of Prolia (and bisphosphonates) and AFF/ONJ but in the interest of keeping the focus of this thread on "How to quit Prolia?" rather than "Why quit Prolia?", i will post just two of them here:
Long-term consequences of osteoporosis therapy with denosumab
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10118828/
Time to onset of bisphosphonate-related osteonecrosis of the jaws: a multicentre retrospective cohort study (2016)
https://pubmed.ncbi.nlm.nih.gov/28039941/