Prednisone and Pain

Posted by keelin @keelin, Oct 29, 2022

Am I the only one that found the prednisone did NOTHING for the pain? I am 6 months into this nightmare and am slowly taking myself OFF prednisone entirely. I had horrible side effects, and it seems that everyone e else I read about has total relief from pain while on the prednisone. ?
The only thing that helps slightly is an anti inflammatory. But of course I am warned about stroke, heart attack, and kidney problems taking it long term.

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

@keelin, I'm sorry to hear the prednisone didn't relieve your pain. Maybe you have a condition other than polymyalgia rheumatica (PMR). There are many conditions that mimic PMR that have different treatments.

— Diseases that mimic polymyalgia rheumatica (PMR):
https://www.medicalnewstoday.com/articles/diseases-that-mimic-polymyalgia-rheumatica
Have you seen a rheumatologist or other specialist?

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@johnbishop

@keelin, I'm sorry to hear the prednisone didn't relieve your pain. Maybe you have a condition other than polymyalgia rheumatica (PMR). There are many conditions that mimic PMR that have different treatments.

— Diseases that mimic polymyalgia rheumatica (PMR):
https://www.medicalnewstoday.com/articles/diseases-that-mimic-polymyalgia-rheumatica
Have you seen a rheumatologist or other specialist?

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I have been to TWO different rheumatologists. Both concur that I have PMR. Both prescribe prednisone ( different exact ones), and both don’t appear to know much of anything about the how, why, where, or when.

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@keelin

I have been to TWO different rheumatologists. Both concur that I have PMR. Both prescribe prednisone ( different exact ones), and both don’t appear to know much of anything about the how, why, where, or when.

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Hi @keelin, It does pay to be your own advocate when it comes to your health. There is another discussion that might come in handy for you.

— PMR: Are there treatment alternatives to Prednisone?:
https://connect.mayoclinic.org/discussion/alternatives-to-prednisone/
Have you asked your doctors about possible alternatives to prednisone?

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Unhappily there don’t seem to be alternatives to the standard treatment. But it does seem clear that experiences of those of us living within the PMR/Prednisolone bubble are very variable. For what it’s worth, here is my own current assessment of my own case. First, I do take seriously the long term risks said to be involved in continuing high doses of Prednisolone – though I haven’t been aware of any unwanted side effects from Pred during my 10 month reduction from 15mg to 5mg daily. So I am obediently reducing the dose in monthly decrements. I’m far from certain how effective it is, but I’m not game to experiment with cold turkey cessation. I cannot remember how bad the pain was before Pred. Bad, but not excruciating. Since commencing Pred and progressing down through the tapering dosage the pain I suffer seems pretty constant in intensity but over the months the locus has extended from shoulders and hips to knees, wrists and now – fingers. No swelling, just pain. Worst in the mornings; but alleviated by vigorous exercise. In my more discouraged moments I’m inclined to believe that the sole purpose of this tapering Pred therapy is to accustom me to living and functioning with a level of pain that, pre-PMR, I would once have found intolerable. It’s encouraging, in an odd sort of way, to discover how much one can still do and how much enjoyment remains in one’s life.

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If you have experienced no pain relief after a couple weeks, I would be skeptical that you do have PMR. While some don't experience total relief from pain or find it took a week or so for effectiveness, to have no help from prednisone would be very unusual. Prednisone causing relief from pain is the usual confirmation of PMR. What dose are you at?

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@connelly

Unhappily there don’t seem to be alternatives to the standard treatment. But it does seem clear that experiences of those of us living within the PMR/Prednisolone bubble are very variable. For what it’s worth, here is my own current assessment of my own case. First, I do take seriously the long term risks said to be involved in continuing high doses of Prednisolone – though I haven’t been aware of any unwanted side effects from Pred during my 10 month reduction from 15mg to 5mg daily. So I am obediently reducing the dose in monthly decrements. I’m far from certain how effective it is, but I’m not game to experiment with cold turkey cessation. I cannot remember how bad the pain was before Pred. Bad, but not excruciating. Since commencing Pred and progressing down through the tapering dosage the pain I suffer seems pretty constant in intensity but over the months the locus has extended from shoulders and hips to knees, wrists and now – fingers. No swelling, just pain. Worst in the mornings; but alleviated by vigorous exercise. In my more discouraged moments I’m inclined to believe that the sole purpose of this tapering Pred therapy is to accustom me to living and functioning with a level of pain that, pre-PMR, I would once have found intolerable. It’s encouraging, in an odd sort of way, to discover how much one can still do and how much enjoyment remains in one’s life.

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My primary doctor does not believe that those of us with PMR are required to endure pain. Eating healthy, exercising and managing the risks of prednisone with the help of my primary help me have a reasonably good quality of life while traveling this road.

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@connelly

Unhappily there don’t seem to be alternatives to the standard treatment. But it does seem clear that experiences of those of us living within the PMR/Prednisolone bubble are very variable. For what it’s worth, here is my own current assessment of my own case. First, I do take seriously the long term risks said to be involved in continuing high doses of Prednisolone – though I haven’t been aware of any unwanted side effects from Pred during my 10 month reduction from 15mg to 5mg daily. So I am obediently reducing the dose in monthly decrements. I’m far from certain how effective it is, but I’m not game to experiment with cold turkey cessation. I cannot remember how bad the pain was before Pred. Bad, but not excruciating. Since commencing Pred and progressing down through the tapering dosage the pain I suffer seems pretty constant in intensity but over the months the locus has extended from shoulders and hips to knees, wrists and now – fingers. No swelling, just pain. Worst in the mornings; but alleviated by vigorous exercise. In my more discouraged moments I’m inclined to believe that the sole purpose of this tapering Pred therapy is to accustom me to living and functioning with a level of pain that, pre-PMR, I would once have found intolerable. It’s encouraging, in an odd sort of way, to discover how much one can still do and how much enjoyment remains in one’s life.

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Hi, I am now in my 11th month juggling PMR, and like you I progressed steadily from 15 mg to 5 mg each month. No problems along the way or from counting down from 5, 4, and 3 mg. When I dropped to 2 mg a month ago, I had a flare up and then went back to 3 mg and now 4 mg for the next month. Even at 4 mg, I'm having a lot of discomfort, especially in my wrists and hands. Who would imagine that dropping 1 mg could prove such a setback?

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I had a similar experience when I got to 2 mg. My hips and back of my thighs became very stiff and uncomfortable. I have been on prednisone for 19 months when this happened. It’s been that way for over a month now and hasn’t gotten worse or better. I choose to wait it out until I see the rheumatologist next. This is the first time that I have any problems tapering even after getting 4 Covid vax.

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Thanks for these helpful despatches from low dose territory – which I think of as less than 5mg daily. I’m now a week on 5mg and tell myself that my body will adapt itself over the next few weeks in readiness for the next reduction to that desirable LD destination. Exercise (gym and running) helps and also provides a measurable index of what I can still do, physically. But pervasive fatigue seems worse and the period of relative relief from pain after the morning dose of Pred seems shorter; pain returns in the evenings. But I’m hanging in there, as they say.

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I'm relatively new to this PMR experience. You are the first person I've heard of who has not received relief from Prednisone. I don't have anything to add to what everyone else has said except to say I am sorry you are having such a difficult time and hope you will find some relief. I hate taking Pred., but am on a relatively low dose (5mg), hoping to taper to 3 eventually, but I'm scared to start scaling back because the pain without the Pred. is intolerable and I don't want to exacerbate my problem with a flare-up. I wish you the best and hope you find a solution to your situation. Thanks for sharing with us.

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