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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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No. I saw a rheumatologist and my family dr recommended another rheumatologist but I declined. What is this anabolic
medication you mention?
@hmbrglr
So sorry to hear this. I’m just mad that my endocrinologist didn’t tell me about all the side effects prior to switching me from Alendronate to Prolia. Side effects only lasted a few weeks but now with stopping Prolio and not transitioning to something else, I’m dealing with the after effects of that. My T-score on my lumbar spine was -1.2 in 2024 then January, 2026, it went to -0.2. So the Prolia probably helped but the side effects were just too much. I’m just praying it doesn’t turn into osteoporosis. I have appt with new doctor next week, and hoping she has better answers. Prayers being sent to you.
I've read through many of the comments. Thank you for this important discussion. I've been on prolonged injections twice per year foe 8 years. I addressed my desire to get off the injections with my endocrinologist a year ago and was told I'd have to be on them for the rest of my life. When I started the injections, I was told that research showed there was new bone growth and I'd need to be on it for ten years. I feel very deceived. I trusted him because he was a researcher with NASA on bone density. I'm at a loss at where I should turn for guidance. What should I look for in a Dr. that can guide me. All of my T-scores are now normal or are close to normal. I've had multiple fractures throughout my life, especially over the last 20 years. Ive had a couple of very bad fractures in the past 10 years. If anyone can offer some pointers, I'd greatly appreciate it.
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2 Reactionsdawhitacre1,
You've decided to quit Prolia.
It is fairly standard to start Reclast after Prolia. It is the best medication to prevent rebound after Prolia. But it has its own set of side effects. Some people fare well with different bisphosphonates of lesser strength like alendronate Fosamax. You would probably want bone markers if you decide on those bisphosphonates that aren't as strong.
Finding a endocrinologist might start here. If you give us your city, their may be someone who will respond with a the name of their own doctor.
I've noticed that the younger endocrinologists offer you a choice. I look on the internet and try to find a doctor who does research or expresses interest in osteoporosis. If you find one with an osteoporosis specialty they are more likely to be apprised of the latest research, although the NASA researcher experience might weight against the idea.
Your trusted doctor was telling you what he genuinely thinks with regard to Prolia. Many doctors prescribe the drug. And there are patients who respond quite well to Prolia and take it for the rest of their lives. Initially the risks weren't known and the prevalence of those risk are either unreported of low.
It sounds as if you had no negative side effects with Prolia and have gained good bone density. I'm curious about why you've decided to quit, even as I applaud your decision.
Oddly, each of these medication is great for some, inefficient or devastating for others.
Had you any fractures while you were on Prolia?
It seems like it shouldn't be too difficult to find a endocrinologist who will work with you.
We'd like to help.
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1 Reaction@dawhitacre1
I do not envy your need to find another endo. Given the your complex history of fractures, if it was me I would seek a consultation with Keith McCormick.
This chiropractor knows more about the entire osteoporosis universe than just about anyone. Why? He developed multiple fractures at a young age while competing in marathons at high levels. He became determined to figure out a way to deal with/reverse this after finding little to no help in the traditional treatment environment. He did succeed in reversing his osteo and stopping the fractures.
Please research McCormick and his publications. 'Good Bones' is basically the osteo bible even though it is highly technical at times.
Best of luck as you proceed.
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1 Reaction@gently hello. When you say "we'd like to help" are you referring to the people in this chat (yes that is true!) Or are you a health professional monitoring this site? thank you.
daylemaples, I've no medical background at all. I'm referencing the wonderful responders and moderators. I don't think there are many mds on site, or many nurses but they are quite helpful.
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1 ReactionI had 4 shots (2 years) of Prolia with improvement, but was rapidly losing my hair and broke out with an itchy back rash, so I am on the 2nd week of a low dose of Fosamax and wonder if this will control the Prolia "rebound" effect???
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1 Reaction@janedell
How is this being monitored for effectiveness......bone markers? .....more frequent dexa scans?
@gently
Thank you. I live in the tri-state area of Cincinnati, Oh.
I've had 4 fractures in the 8 years I've been on Prolia due to falling from various activities I'm into. I have shrunk in height 2 inches in that time and developed back problems. It's frustrating because I've taken very good care of myself. Ive had hip pain since starting on Prolia, which is a side effect. I'm open for a better path. I don't like the fact that I'm mostly retaining old bone, which causes brittle bones. Thank you for your ideas.