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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For all the folks not taking Prolia or a biphosphonate, have you considered Forteo, Tymlos or Evenity? I could not take Prolia, biphosphonates or Forteo and my doctor agreed. I went several years without meds. I fractured three lumbar vertebrae with one movement. It was/is so painful and disabling. I am not on Tymlos. The side effects aren't great but I wish I had taken it sooner. I will go through any side effects at this point, and the body adjusts after awhile so they are more than tolerable anyway. Forums are so negative. I really feel that the Internet affected me so I am trying to post an alternative view so others don't go through what I have gone through.

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@username26

I just started prolia one shot about 6 months ago and don’t know about the things you are saying. I’m getting ready for my next shot and am wondering if I should continue.

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I saw another doctor yesterday who was very helpful. He said I could get a shot or two or three (Prolia) and continue to be monitored. If my numbers were good he’d do one infusion of Reclast and see how I do off meds. The Reclast perhaps locks in the gain in bone mass.

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@elisabethv

I saw another doctor yesterday who was very helpful. He said I could get a shot or two or three (Prolia) and continue to be monitored. If my numbers were good he’d do one infusion of Reclast and see how I do off meds. The Reclast perhaps locks in the gain in bone mass.

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Be Careful! My Prolia shot was delayed a few weeks (because my doc retired and replacement could not see me right away to approve it) and THREE VERTEBRAE BROKE -- two thoracic, one lumbar. I have been in disabling pain ever since! It has hugely reduced my quality of life as I can no longer travel or even walk about very well without pain or do other things I had been enjoying in retirement. I should add I"m 85 years old and had been quite active until this Prolia debacle! I do not know of other osteoporosis meds have the same issues. And now I have to be back on Prolia but that cow already left the barn. I am also dealing with macular degeneration of the eyes which one doc says is because I am on Prolia and another says it is because I have osteoporosis. These are both "specialists" so go figure.

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@joan26

Be Careful! My Prolia shot was delayed a few weeks (because my doc retired and replacement could not see me right away to approve it) and THREE VERTEBRAE BROKE -- two thoracic, one lumbar. I have been in disabling pain ever since! It has hugely reduced my quality of life as I can no longer travel or even walk about very well without pain or do other things I had been enjoying in retirement. I should add I"m 85 years old and had been quite active until this Prolia debacle! I do not know of other osteoporosis meds have the same issues. And now I have to be back on Prolia but that cow already left the barn. I am also dealing with macular degeneration of the eyes which one doc says is because I am on Prolia and another says it is because I have osteoporosis. These are both "specialists" so go figure.

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I am so sorry to hear about your injury. Are you suggesting that I should carefully consider trying to go drug free?

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@joan26

Be Careful! My Prolia shot was delayed a few weeks (because my doc retired and replacement could not see me right away to approve it) and THREE VERTEBRAE BROKE -- two thoracic, one lumbar. I have been in disabling pain ever since! It has hugely reduced my quality of life as I can no longer travel or even walk about very well without pain or do other things I had been enjoying in retirement. I should add I"m 85 years old and had been quite active until this Prolia debacle! I do not know of other osteoporosis meds have the same issues. And now I have to be back on Prolia but that cow already left the barn. I am also dealing with macular degeneration of the eyes which one doc says is because I am on Prolia and another says it is because I have osteoporosis. These are both "specialists" so go figure.

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I am so sorry to hear about your injury as well. I also have macular degeneration, along with severe osteoporosis. My dr. wants me to start Prolia. I saw that discontinuing Prolia could cause vertebrate fractures, but I did not realize that vertebrate fractures could occur within a few weeks. Could you please share how long you had been taking Prolia when these vertebrate fractures occurred? Again, SO sorry this happened to you... it's something that I fear as well. I hope you can heal soon.

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@grannyc123tssb

I am so sorry to hear about your injury as well. I also have macular degeneration, along with severe osteoporosis. My dr. wants me to start Prolia. I saw that discontinuing Prolia could cause vertebrate fractures, but I did not realize that vertebrate fractures could occur within a few weeks. Could you please share how long you had been taking Prolia when these vertebrate fractures occurred? Again, SO sorry this happened to you... it's something that I fear as well. I hope you can heal soon.

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@grannyc123tssb if your osteoporosis is severe, can you take Tymlos, Forteo or Evenity instead? They may work better if you have not taken Prolia or a biphosponate previously. These meds grow bone and can be followed with Prolia or Reclast.

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@windyshores

@grannyc123tssb if your osteoporosis is severe, can you take Tymlos, Forteo or Evenity instead? They may work better if you have not taken Prolia or a biphosponate previously. These meds grow bone and can be followed with Prolia or Reclast.

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Hi... I am just finishing 18 months of Tymlos, so my Dr. wants to start me on Prolia next. Prolia scares me, but I am figuring that losing the bone I gained with Tymlos and the probability of future broken bones scares me more. However, I am just concerned that Prolia may be a medication that causes fractures if taken for too long, in which case I may tell my Dr. that I'd like to have a different drug. Thanks for your suggestion of Tymlos... I agree... And good for others to know about this option here as well.

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@grannyc123tssb

Hi... I am just finishing 18 months of Tymlos, so my Dr. wants to start me on Prolia next. Prolia scares me, but I am figuring that losing the bone I gained with Tymlos and the probability of future broken bones scares me more. However, I am just concerned that Prolia may be a medication that causes fractures if taken for too long, in which case I may tell my Dr. that I'd like to have a different drug. Thanks for your suggestion of Tymlos... I agree... And good for others to know about this option here as well.

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My doc wants me to do Reclast to lock in gains from Tymlos. Can you tolerate that? Reclast stays in the system so there isn't the same drop-off in effects if stopped, I was told. If you are not satisfied with progress, maybe you could do Evenity: I am trying to investigate that. Good luck!

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Hi again... Two Endo drs recommended Prolia first, then Reclast, so I will be headed to Reclast eventually. I'm in my 60s, so if I live 20-30 more years then this is the protocol that will hopefully get me through with minimal issues. 😊
PS I just spoke with my Dr and told her that I'm taking her advice and going with Prolia. Prayers for all of us, and for our drs, too. 🙏😊

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The Company that manufactures Prolia states that a transition medication may be needed to avoid vertebrate fractures that could occur when discontinuing Prolia. I'm wondering if a visiting nurse could go to your wife to give her the Prolia injection? Or perhaps your wife's Dr could prescribe a transition medication in pill form? Either way, this sounds like something best discussed with your wife's Dr. And, by the way, sorry you and your wife are going through this tough transition.

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