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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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Following are links to some articles relating to cessation of Prolia:
Zoledronate for the Prevention of Bone Loss (2019)
https://asbmr.onlinelibrary.wiley.com/doi/full/10.1002/jbmr.3853
Fracture Risk and Management of Discontinuation of Denosumab Therapy: A Systematic Review and Position Statement by ECTS (2020)
https://academic.oup.com/jcem/article/106/1/264/5939974
Denosumab Discontinuation and the Rebound Phenomenon: A Narrative Review (2021)
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7796169/
Fractures After Denosumab Discontinuation: A Retrospective Study of 797 Cases (2021)
https://asbmr.onlinelibrary.wiley.com/doi/10.1002/jbmr.4335
Discontinuing Denosumab: Can It Be Done Safely? A Review of the Literature (2022)
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9081316/
Multiple Vertebral Fractures After Denosumab Discontinuation: FREEDOM and FREEDOM Extension Trials Additional Post Hoc Analyses (2022)
https://asbmr.onlinelibrary.wiley.com/doi/10.1002/jbmr.4705
Bone loss after denosumab discontinuation is prevented by alendronate and zoledronic acid but not risedronate: a retrospective study (2023)
https://link.springer.com/article/10.1007/s00198-022-06648-9
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6 ReactionsThis thread is a great idea @formisc. Curious to see if you lose any bone density with your post-Prolia regimen and how your bone markers change. Good information for others so thanks!
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1 ReactionThanks, windyshores. I will be happy to share my BTM/DXA results and hope that it can help others who might be deciding on a course of action for stopping Prolia
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2 ReactionsAs i do not have any baseline BTM numbers, i will need to rely on reference values. The following are links to some articles on BTMs:
Establishing reference intervals for bone turnover markers in healthy postmenopausal women (2014)
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4162466/
Position Statement on the Use of Bone Turnover Markers for Osteoporosis Treatment - KSBMR (2019)
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6901690/
Bone Turnover Markers: Basic Biology to Clinical Applications (2023)
https://academic.oup.com/edrv/article/44/3/417/6889555
Osteoporosis Markers - NCBI (2023)
https://www.ncbi.nlm.nih.gov/books/NBK559306/
Bone turnover markers to monitor oral bisphosphonate therapy (2023)
https://www.ccjm.org/content/90/1/26
Making best use of bone turnover markers to monitor oral bisphosphonate therapy (2023)
https://www.ccjm.org/content/90/1/32
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2 ReactionsSomeone posted this very helpful BTM link a few days ago (transcript of interview with Dr. McCormick on bone markers): https://food4healthybones.com/wp-content/uploads/2022/10/The-Importance-Of-Bone-Markers-With-Dr.-Keith-McCormick.pdf
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3 ReactionsI am currently taking Prolia and did a huge amount of research on Prolia and the other osteoporosis medications. I actually gathered enough information to put together a training on Prolia. The information included is based on a September 2023 presentation by Dr. Serge Ferrari and Dr. Michael McClung at the 9th Central European Congress of Osteoporosis, as well as Dr. John Bilezikian. These are the top doctors in osteoporosis.
I don't get paid for this, I'm just a guy trying to give back to the community that helped me.
Good luck on your journey!
Mike
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3 ReactionsIn case you're not ready for a 40 minute presentation, the key takeaways are this (summary slide of the presentation):
Choose Prolia if:
Your T-Score is -2.5 or lower and you can’t get Evenity, Tymlos or Forteo.
Your T-Score is between -2.5 and -2.0 and you can’t get above -2.0 using Fosamax, Reclast or HRT
Keep taking Prolia until:
If taking Prolia less than 3 years, take until T-Scores reach -1.5
If taking Prolia 3 years or more, take until T-Scores reach -1.0
To transition off Prolia:
Start Fosamax or Reclast right after Prolia treatment (exactly 6 months after last injection)
Monitor your serum CTX level for possible dosing / redosing with Reclast
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1 ReactionLastly, sorry, this information is intended to educate you to discuss treatments with your doctor. I am not a doctor.
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2 ReactionsHi Michael,
I must commend you on a very well-done presentation and a professional looking video! I really thought you were a doctor until i read your post above!
I found the section on stopping Prolia very helpful and encouraging. I was less thrilled on the part promoting the use of Prolia under different circumstances.
I didn't want to discuss the pros and cons of Prolia in this discussion thread which, as i stated earlier in my first post, was to cater for those who already decided to quit Prolia but feel i should at least say something to act as a balance to the "positives" mentioned in the presentation.
To me Prolia is like a never-ending tunnel. Once you start on it, it becomes progressively harder to get off it.
See below video by Cleveland Clinic:
Once on Prolia for 4+ years, there's no guarantee that any drug (including Reclast) will safely allow you to stop without the rebound effect and risk of multiple fractures.
In that case, someone will ask - why stop at all then if the drug works and the side-effects are manageable? To that, i can point out 3 things:
Firstly, there is safety data available for Prolia for only 10 years and most doctors would not advice staying on Prolia for longer than 10 years. So for someone in the 80s or 90s, it could be an option but consider too the next 2 points
Secondly, once on Prolia for around 5 years, there are significant risks of multiple vertebral fractures and osteonecrosis of the jaw and this risk increases the longer one is on Prolia. Prolia reduces bone absorption immensely and this slows down any bone healing after say, any invasive dental work. So staying on Prolia indefinitely brings on increasing risks
Thirdly, circumstances could lead to an unplanned cessation of Prolia, even if temporary, for example, stoppage of insurance coverage upon reaching a target or satisfactory TScore (in fact this was what happened in the past leading to multiple fractures) or as we all experienced, a Covid lockdown. If this sudden unplanned cessation happens after one has more than 1 injection, there will be the risk of rebound effect
As pointed out by some practitioners, there may be cases where Prolia is the best option - the one i have read is where there is a very high risk of impending fracture and a need to very quickly bring down this risk - but i believe these are limited
I have deliberately not bring up the topic of the efficacy of Prolia (and anti-resorptives in general) in improving bones as i did not want to stir up a hornet's nest but there are many who question if anti-resorptives merely add a layer over existing weak bones, hence improving bone density numbers without actually improving their quality
Above are just my views. Like you, i am not a doctor and i am only putting out the above as things that can be brought up and discussed with a PCP/specialist if necessary
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10 ReactionsSorry, just a self-correction:
"Secondly, once on Prolia for around 5 years, there are significant risks of [atypical femur fractures] and osteonecrosis of the jaw... "
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6 Reactions