Can I quit Prolia shots after taking five shots without problems?

I have been on Prolia for 8 years. I cannot handle the side effects any more so I told my doctor that I would not take another shot. I have had years of UTIs, severe muscle pain, unbearable cramps in my feet and ankles, sleep disturbances, bruising all over my legs, and frequent urination. Both my rheumatologist and my endocrinologist have suggested reclast or fosamax. The side effects of reclast terrify me. I would like to say no to both options but I am afraid of fracturing. My current T-score is as follows: Left hip -1.0, last year -1.3. Spine -0.4, last year -1.1. Right forearm -1.2, last year -0.3. I welcome any advice that you can give me. My next shot is due in December.

If you have been on Prolia that long, my doctor would insist on Reclast @tb39. He would say Fosamax is not strong enough but if you cannot tolerate Reclast, that would be your only other option. Do you have any GERD/reflux?

To me, your DEXA scores are amazing. What were they when you fractured? I have read somewhere that even if your score does not plunge, your fracture risk could rise sharply. Talk to your doctor about this!

Keith McCormick wrote "Great Bones," a book that many of us use, and there is a section on how to carefully transition to Reclast from Prolia using bone markers.

Reclast will cause a few days up to a week+ of an acute phase reaction for many of us. For me fever of 99+, aches, headache but after the first one the second one tends not to have it, according to various articles. I did not have a fever the second time. Most people I know tolerate it pretty well. I have a few side effects that are tolerable, more tolerable than my fractures!

May i ask, whether your dr is a pcp or a specialist? Both specialists and research literature warn about the risks of stopping prolia. I refuse to take it. i think you need a specialist (rheumatologist or endocrinologist) to help you develop a safe followup plan)

My last Prolia shot was in February, 2024 and I wanted to stop the shot. I read that stopping it could cause rebound problems so I went to a specialist at the Bone Clinic in Kansas City and I was tested and advised to get a Reclast infusion. I had the infusion on August 28, 2024. About 12 hours after the infusion I felt bad for another day and then I gradually improved. I feel good now and pleased that I am finished with the Prolia shot. I had sharp pains in the mastoid bone in my right ear off and on starting a few months after I had my first shot on February 2022. I have had some body aches and some pain in my right ear since the Reclast infusion but I am feeling better now. I will have another dexa scan next isummer.

Don’t take the chance. I am talking from experience! Go on fosamex or something else

There are clinical studies that have tested this; and I believe 5 -6 is at the upper limit before rebound happens. My endo and I are planning on 4 Prolia shots, followed up immediately with a biphosphonate program for several years. I might suggest this to your Dr and ask what the downside is … good luck!

to wnk@wnk
I have come across the important information about the discontinuation of prolia and send it to you and other patients who have to take decisions.
https://melioguide.com/medications/how-to-discontinue-prolia/
This information was put by Margaret Martin in October 2024.

Hope it will help.

McCormick suggests 1-3 Prolia shots then bisphosphonate. My doc won't use Prolia at all unless absolutely necessary when a patient cannot tolerate anything else and is old enough to stay on it forever.

@suzieqqqqq You suggest that the risk of rebound to Prolia starts at 5-6 fractures. I have never seen evidence that there is a known number of Prolia shots before rebounds happen. If you can find sources for this statement please post it. Your comment could be taken by other readers to mean that it is safe to stop Prolia without a follow up med if you've had up to two years of Prolia. I think that would be dangerous.

It is generally acknowledged that the longer the time on Prolia the greater the risk of multiple fractures after stopping. But again I have never seen anything showing that it is safe to have 4 shots and then stop without a follow up med to help stop the bone loss and possible multi fracturing.

Also it depends on what you mean by "rebound". If you stop with just one Prolia shot you rebound in the sense that you lose the bone you gained from that shot (and maybe more). If you have 10 years of Prolia and stop, you lose all the gain you had with those 10 years. That's one part of "rebound". The other part is that some people start having multiple fractures after stopping. Sometimes large numbers of fractures. I've seen as many as 8-12 fractures claimed on the user groups. Starting and stopping Prolia is serious business.

@cliffordfry If you know that the risk of increased fracturing occurs when stopping Prolia why are you stopping and just wondering about the odds. Take a follow up med to help block or reduce the rebound and do it right away.
Also you do not mention how many years on Prolia. The more years the greater the danger and the need for stronger drugs to try to block the rebound.
Even if you do not get the dreaded multi fracturing that can happen when stopping it you will lose all the bone you gained from taking Prolia in pretty short order.
You could consider spinal x rays if you want to see if you have the minor fracturing already occurring.