Once You Stop Prolia

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I am 55 years old and have lupus, arthritis, and severe osteoporosis. After more than a decade of taking various meds to try to stop my bones from wasting away with no success, I had my first injection of Prolia at the end of December 2015. I am supposed to get my second shot within the week, but have decided against it. Like many of you, I have felt just awful since December: severe bone and joint pain, worsening depression, constipation, exhaustion, and just plain feeling incapable of doing almost anything. When I talked to both my endocrinologist and rheumatologist about my symptoms, my concerns were dismissed and I was told the side effects would only last a few days at the most. My question is have any of you felt better after you stopped taking the Prolia? If so, how long did it take for you to begin to feel like your old self. I'm really terrified that this is my new normal. Any feedback would be much appreciated.

5 Replies

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1

Hello, Janet! How are you? I'm very sorry that you're so miserable.

This medication has done that to many people and no, contrary to what your doctors said, the side effects usually last a lot longer than a couple of days. There have been many miserable people complaining about it. From what I've seen in posts from others, it may take a couple months for you to start feeling better, after stopping it. As a matter of fact, I've advised my mother-in-law against using such medications for her osteoporosis, unless it gets so severe that she runs out of options, so far she's been doing well with calcium and vitamin D supplements.

Everything you've listed are common side effects that have been reported by the FDA. You may also experience nausea, dizziness and administration site irritation.

Can anyone that's been on Prolia please chime in?

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2

Janet: Everyone is different. My one inj. was July 2013 and I still have lingering side effects. It's a long hard road with many set backs. Just when you think they have gone, they came back again. It adds insult to injury when your complaints are dismissed by your doctor. Find a doctor who will listen and monitor you. Report to the FDA # 1-888-463-6332 and Amgen 1-877-477-6542. Hope you are feeling better.

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3

I will not take another Prolia injection. Had first one two moths ago and hope these symptoms do not last another four months. I am 73 and have been very active until now. I have severe shortness of breath, low blood pressure, double the pain, stomach cramps and extreme weakness. This has been quite a shock and I just want it to end. I have been to the doctor so it is not due to other factors. I would never recommend it to anyone.

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Re: Ronna (# 3) Expand Referenced Message

You are the first person who said they have shortness of breath. I had that after my 1st and even worse after my 2nd shot but to this day my Dr. say none of my problems are due to prolia. I am not having another shot.

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5

I have been considering not having another shot also but some studies have shown the a large percentage of patients who stop have had fractures soon after. I am still researching.

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