1. < Osteoporosis & Bone Health

Can Prolia be safely and reasonably discontinued?

Posted by kdryder @kdryder, Mar 5, 2021

My wife is 85 years old, taking Prolia, and has recently moved to an assisted living facility. It is very difficult for her to travel from the ALF, and she does not wish to do so for any reason. Is there a point at which it is reasonable to discontinue Prolia infusions? (Note: The ALF will not do infusions on site.)

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windyshores | @windyshores | Mar 5, 2022
In reply to @betterhealth "I recently had to stop taking Prolia due to development of MRONJ. Fosamax would not work..." + (show)
@betterhealth

I recently had to stop taking Prolia due to development of MRONJ. Fosamax would not work for me because of the MRONJ, but my Doctor has recommended tymlos as an alternative treatment for osteoporosis. If tymlos doesn't work, I am also going to review the option of Evista which is an estrogen treatment. Take care!

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Just want to clarify that Evista is not an estrogen treatment, but is a SERM (Selective Estrogen Receptor Modulator). This is important because estrogen increases breast cancer risk. Evista does have a risk of blood clots for some but does not carry the same breast cancer risk as estrogen does.

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hlp123 | @hlp123 | Mar 5, 2022
In reply to @sewcouture "Hi, I am 79 and stopped Prolia after 2 shots. My Dr. is chairman of the..." + (show)
@sewcouture

Hi,
I am 79 and stopped Prolia after 2 shots. My Dr. is chairman of the endocrinology clinic at Walter Reed National Medical Center in Bethesda (also former chairman of the National Endocrinology Socity). I told him I wanted to stop after 2 shots as the side effects were terrible (as I have described previously on this site). I am now pain free and can live a normal life and walk 2-4 miles a day and feel great. If your body is telling you that what you are doing or taking, stop. Good luck! Be your own advocate.

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I want to stop Prolia. I have had terrible joint, muscle and bone pain. But my doctors are telling me to replace it with reclast and the ride effects appear to be just as bad if not worse since the kidneys are stressed and your vision is involved. I do not want to take any of the drugs but I am terrified of getting the spinal fractures after I stop Prolia. I am do for my third injection March 21. I don't know what to do.
Any help is appreciated.

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1 reply
hlp123 | @hlp123 | Mar 5, 2022
In reply to @tarmansbks "I don't know that Carol is taking anything. She is 88 years old and perhaps feels..." + (show)
@tarmansbks

I don't know that Carol is taking anything. She is 88 years old and perhaps feels like it is not worth it. She has minded her husband dying and with covid and isolation, it is hard to think much about the future. I am not at this time taking anything. It's a risk I know but I am seeing a polio specialist in October and will discuss it with him. So many medications may help one thing and exacerbate something else which seems to be my case so often and makes me shy of trying something new.

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I understand exactly what you are saying. I want to get off of Prolia but every alternative either causes hypertension, vision problems, kidney problems etc. I know their is no perfect or pain free solution but the side effects from Prolia are extreme and Reclast appears to be a real problem also. I feel trapped. Everything is connected. One thing exacerbates the other. I don't know what to do because I started Prolia. None of my doctors seem to understand or know how to get me off of this roller coster.

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hlp123 | @hlp123 | Mar 5, 2022
In reply to @sewcouture "Hi, I am 79 and stopped Prolia after 2 shots. My Dr. is chairman of the..." + (show)
@sewcouture

Hi,
I am 79 and stopped Prolia after 2 shots. My Dr. is chairman of the endocrinology clinic at Walter Reed National Medical Center in Bethesda (also former chairman of the National Endocrinology Socity). I told him I wanted to stop after 2 shots as the side effects were terrible (as I have described previously on this site). I am now pain free and can live a normal life and walk 2-4 miles a day and feel great. If your body is telling you that what you are doing or taking, stop. Good luck! Be your own advocate.

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God Bless you !!!!!
My body is telling me that Prolia is a poison, but I am terrified of stopping it because I don't want to get the spinal fractures !
How wonderful that you managed to stop Prolia. I am trying to do that, without taking anymore drugs.

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1 reply
hlp123 | @hlp123 | Mar 5, 2022
In reply to @joan26 "Prolia is destroying me! Macular degeneration in both eyes which retina specialist tells me is from..." + (show)
@joan26

Prolia is destroying me! Macular degeneration in both eyes which retina specialist tells me is from Prolia. Prolia rep says is because of having osteoporosis -- but I had osteoporosis long before Prolia and guess who I would believe!. I also have three PAINFUL broken vertebrae sustained when my doc retired and new one couldn't see me right away. This delay of a few weeks in getting Prolia shot resulted in the fractures! So it's bad news if I take Prolia and worse if try to stop!

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This is exactly how I feel. I want to get off of the Prolia but I do not want the spinal fractures. I am so sorry that you are experiencing this !
I so wish that doctors would stop pushing Prolia and listen to those of us who are having so many problems with it.

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janetlynn48 | @janetlynn48 | Mar 5, 2022

prolia is bad for tmj....used forteo severalyears ago. want to start strontium. May still have records at may since we used to live in rochester.

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tarmansbks | @tarmansbks | Mar 5, 2022
In reply to @hlp123 "God Bless you !!!!! My body is telling me that Prolia is a poison, but I..." + (show)
@hlp123

God Bless you !!!!!
My body is telling me that Prolia is a poison, but I am terrified of stopping it because I don't want to get the spinal fractures !
How wonderful that you managed to stop Prolia. I am trying to do that, without taking anymore drugs.

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I just never went for the fourth shot. I have to take my chances and probably with having polio at 10 months and being unstable and taking medrol for R/A, I am at risk but I accepted it and try to be as careful. Of course bones can break without falling I understand that. It is a dilemma and I wish I knew a good answer.

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1 reply
rashida | @rashida | Mar 5, 2022
In reply to @sewcouture "Hi, I am 79 and stopped Prolia after 2 shots. My Dr. is chairman of the..." + (show)
@sewcouture

Hi,
I am 79 and stopped Prolia after 2 shots. My Dr. is chairman of the endocrinology clinic at Walter Reed National Medical Center in Bethesda (also former chairman of the National Endocrinology Socity). I told him I wanted to stop after 2 shots as the side effects were terrible (as I have described previously on this site). I am now pain free and can live a normal life and walk 2-4 miles a day and feel great. If your body is telling you that what you are doing or taking, stop. Good luck! Be your own advocate.

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@sewcouture - are you on a relay drug?

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1 reply
rashida | @rashida | Mar 5, 2022
In reply to @kdryder "I'm not sure about the past treatments my wife has had, but her current Prolia regimen..." + (show)
@kdryder

I'm not sure about the past treatments my wife has had, but her current Prolia regimen is an injection. I misspoke by using the term "infusion." It is as quick and painless as a flu shot.

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@kdryder - you’d think every AFL in North America would have at least a Nurse on site, or visiting regularly, if not a GP or NP! 😠 Canadians correct me if I am wrong but … I believe every AFL in Canada has this service.

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sewcouture | @sewcouture | Mar 6, 2022
In reply to @rashida "@sewcouture - are you on a relay drug?" + (show)
@rashida

@sewcouture - are you on a relay drug?

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Hi, No. I take ergocalciferol and Vitamin D. I am not going on any osteoporosis drugs again. Before Prolia I was on one (can't remember the name) and Boniva. They both made me sick . So now, I feel great and I am staying far away from any of the osteoporosis drugs.

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