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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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Hi did you go on prolia due to dexa showing osteoporosis? I've had 4 shots of prolia, due next week for 5th. Not taking. No mention about CTX et ., which I never heard of prior to joining this forum. I plan to start Algaecal plus. I've had no fractures. Just was advised to try prolia due to dexa score,
Yes. My doctor prescribed Prolia due to DEXA score (-2.7 at hip, normal spine). Also (I think) because I had been on Fosomax for too many years, which according to info here on Connect, taking Fosomax for more than 5 years is not recommended.
Please re-consider your decision about quitting Prolia without a follow-up bisphosphonate such as Reclast or Fosomax. Without follow-up meds, there is an increased risk of fracture after stopping Prolia as shown by many of the studies provided in this thread.
Does your doctor know you intend to quit Prolia cold turkey?
Please review carefully this thread along with several other Connect threads discussing discontinuation of Prolia and you will be have all the necessary info about WHY you likely need a follow-up medication and about the use of CTX as a tracking method. You can then make a good decision about quitting Prolia.
Best of luck.
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4 ReactionsThank you very much for posting your March BTM results, rjd. A bit surprised at the drop in CTX especially since you have moved to half dosage but it is certainly not that low as to cause any worry. Would be very interested to see your June CTX and DEXA results
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1 ReactionMy gyno is the one overseeing my osteoporosis . I notified her that I'm coming off Prolia which she disagreed. I asked her to schedule a CTx and she had no idea what that was nor could do so and referred me to a osteo doctor offer that I'll probably have to wait months. It's so aggrevating I have no expertise docs in my area. There needs to be so much for research and seems like very little of that is being accomplished.
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1 ReactionVery few of us have good docs with expertise that we would like to see with osteroporosis. This is why we all have to do our own research....there are published studies that can be quite helpful to your understanding about the process of quitting Prolia and how to proceed.
It is a royal pain but I would not rely on alternatives without good solid evidence that they work and not just something someone is trying to sell you.
You do not have much time between now and next week. And you seem to have already made up your mind.
However, if it was me, I would take the next Prolia injection, make the appointment with an osteo doctor (hopefully a decent endo) put myself through a crash course on osteoporosis and plan a transition away from Prolia that minimizes the chances of rebound with its increased risk of fracture.
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1 Reactionrjd, thanks for posting. The June dxa will be so interesting. I've been wondering how long Prolia-bone lasts if someone properly lowers the osteoclasts.
I am in agreement w @rjd, you probably need a stronger bisphosphenate to transition from Prolia. And the more Prolia injections you’ve had the greater the possibility of a severe rebound. I took 4 shots of Prolia, stopped, went on monthly Boniva (okayed by endo with NO warnings at all and no testing) and within a year right before due for my yearly exam and labs had three compression fractures of spine. Horrible way to find out that Boniva was not strong enough to counteract rebound! Now on Tymlos since October, Ctx 635 and P1np 112. I have done tons of research including reading Great Bones by Dr Keith McCormick, and realize that if my endo had known what she was doing would have put me on Reclast and monitored my progress closely. I now am starting with a new specialist in bone health, may 15th is my first appointment.
It’s wonderful to do all the natural remedies and supplements as well as safe exercises but many times we are just stuck for a while at least on the medication train! I hope your transition is smoother than mine was. I’d say the quicker you can get off Prolia the better, but I did have a terrible experience with it, so I am jaded!
Also interesting fact my Dexa scans were always just osteopenia, until after the Prolia was out of my system, and I fractured, now it shows osteoporosis.
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