1. < Polymyalgia Rheumatica (PMR)
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Off Prednisone but still feeling new type of pain

Posted by abbeyc @abbeyc, Dec 16, 2025

I've been off Prednisone for 6 months. (I was on Prednisone for 3.5 years). My blood inflammation markers have been normal for years and multiple Rheumatologists and doctors all said I no longer had PMR. So I went off steroids.

So now the question: Has anyone else gone off Prednisone but still plagued with mysterious aches and pains (muscles and joints - but not as severe or similar to PMR)? It's something else, I think.

I can get along okay during the day, but first thing in the morning I'm very stiff and it hurts to move. Also if I sit too long, then the same thing happens. Once I get moving it gets better quickly. Although throughout the day knees, hips and upper arms can occasionally hurt. I can't do things like I used to.
I've seen so many doctors who can't tell me what's wrong.

anyone else?

I don't want to go back on Prednisone and I don't want to resort to other drugs, but quality of life is definitely suffering. So wondering if maybe I should be taking some sort of medication (not Prednisone).
any suggestions?

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Profile picture for Mike
Mike | @dadcue | Feb 2 11:11am
In reply to @abbeyc "@dadcue since going off prednisone 9 months ago I have since stopped taking LDN and hydroxychloroquine...." + (show)
Profile picture for abbeyc @abbeyc

@dadcue since going off prednisone 9 months ago I have since stopped taking LDN and hydroxychloroquine. Both were Prednisone sparing drugs. I decided to bite the bullet and see what happens.
I have virtually no pain and believe I should have done this years ago.
I am stronger now and able to work out at the gym almost as well as before PMR. The prednisone had weakened my muscles which was making recovery harder. The pain I was often feeling was actually my muscles screaming because they were so weak
These drugs make us too dependent

I am so happy I have my life back. I’m celebrating by planning lots of travel which I had stopped because I never felt healthy enough to leave home on a trip.
The money I am saving by not going to doctors and paying for meds and supplements will help make this possible too.

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@abbeyc

Are you still receiving treatment or did you just stop taking your medications?

I firmly believe the secondary adrenal insufficiency that Prednisone caused was more of a problem than PMR ever was. You are right about being dependent on Prednisone after adrenal suppression occurs. Secondary adrenal insufficiency caused by long-term prednisone use is recognized as a significant, often overlooked complication that can be harder to manage than the original PMR.

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1 reply
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beauty44 | @beauty44 | Feb 2 11:26am
In reply to @noti "I’ve been coping with all of those things since stopping prednisone four months ago, after 15..." + (show)
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I’ve been coping with all of those things since stopping prednisone four months ago, after 15 months on prednisone.
Initially I felt worse than I’d felt in a year, but my adrenals slowly kicked in after a few months. My solution has been to take presumably safe amounts of Tylenol as needed. I’ve slowly been improving in the sense that I can wait longer and longer between doses and have gone from three 500 mg extra strength Tylenol tablets a day to currently one 650 mg Tylenol for arthritis tablet in the morning and one 500 mg pill in the evening. I’ve basically been experimenting with how much I need for comfort and when are the best times to take it. So I pretty much just take it when I start to feel uncomfortable, preferably before I feel too uncomfortable.

My only side effect as far as I can tell is occasional indigestion.That has mostly gone away since I started drinking kefir, usually just a little in the morning, or as needed if I start to feel indigestion, bubbling up.

Keep in mind that during the period of time that you were on prednisone, you were still aging, so a lot of those things could be unfortunate side effects of getting older. Which makes exercise and keeping up, or in my case rebuilding strength so important. I was 69 when this whole thing started, 70 when diagnosed, and am 71 now.

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I am 83 years old .
Was diagnosed with Polymyalgia Rheumatica a year and a half ago. I have Polycythemia Vera and Hashimotos Disease. A son is terminal with Polycythemia Vera .
I started on 20 milligrams of Prednisone. My Rheumatologist took me down each month. My last pill is in 11 days. I’ve had some side effects, I am doing well and grateful in so many ways. There is so much the specialist don’t know about these diseases and we all have questions. Be patient and make sure you have a good attitude. Get out and walk , rest. Don’t skip or stop your pills . Talk to your Dr. I am doing so well and you will feel better . Try not to get discouraged. There is always hope
Donna

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abbeyc | @abbeyc | Feb 2 1:54pm
In reply to @dadcue "@abbeyc Are you still receiving treatment or did you just stop taking your medications? I firmly..." + (show)
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@abbeyc

Are you still receiving treatment or did you just stop taking your medications?

I firmly believe the secondary adrenal insufficiency that Prednisone caused was more of a problem than PMR ever was. You are right about being dependent on Prednisone after adrenal suppression occurs. Secondary adrenal insufficiency caused by long-term prednisone use is recognized as a significant, often overlooked complication that can be harder to manage than the original PMR.

Jump to this post

@dadcue yes I went off prednisone in May2025 and the onchologist assumed I had Addrenal insufficiency but the cortisol tests proved otherwise. I was very slow and careful with my Prednisone taper to avoid adrenal issues.

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2 replies
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janiceh | @dahliamama | Feb 4 6:58am

I THANK ALL FOR YOUR INPUT
I AM 79 , DIOGNOSED WITH PMR 3 YRS AGO WITH 20 MG. NOW ON 5 . HAD A FLARE O
AR 1 MG. LAST YR. THIS PASR WEEK A BIG FLARE OVER MY WHOLE BODY . NO CALL BACK FROM MY DR. SO I PUT MYSELF ON WHT TJE 6 DSY PREDIDONE PKG
IS AND TYLENOL. DOING MUCH BETTER I DONT KNOW IF I WANT TO GO BACK TO METHOTREXATE . ONLY ON IT A SHORT TIME.

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2 replies
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tweetypie13 | @tweetypie13 | Feb 4 9:52am
In reply to @dahliamama "I THANK ALL FOR YOUR INPUT I AM 79 , DIOGNOSED WITH PMR 3 YRS AGO..." + (show)
Profile picture for janiceh @dahliamama

I THANK ALL FOR YOUR INPUT
I AM 79 , DIOGNOSED WITH PMR 3 YRS AGO WITH 20 MG. NOW ON 5 . HAD A FLARE O
AR 1 MG. LAST YR. THIS PASR WEEK A BIG FLARE OVER MY WHOLE BODY . NO CALL BACK FROM MY DR. SO I PUT MYSELF ON WHT TJE 6 DSY PREDIDONE PKG
IS AND TYLENOL. DOING MUCH BETTER I DONT KNOW IF I WANT TO GO BACK TO METHOTREXATE . ONLY ON IT A SHORT TIME.

Jump to this post

@dahliamama
Sorry,I’m having trouble under this.
I like Tylenol for arthritis…my rheumatologist told me abt it.
Follow bottle instructions.
May help

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Profile picture for beauty44
beauty44 | @beauty44 | Feb 5 3:33pm
In reply to @dahliamama "I THANK ALL FOR YOUR INPUT I AM 79 , DIOGNOSED WITH PMR 3 YRS AGO..." + (show)
Profile picture for janiceh @dahliamama

I THANK ALL FOR YOUR INPUT
I AM 79 , DIOGNOSED WITH PMR 3 YRS AGO WITH 20 MG. NOW ON 5 . HAD A FLARE O
AR 1 MG. LAST YR. THIS PASR WEEK A BIG FLARE OVER MY WHOLE BODY . NO CALL BACK FROM MY DR. SO I PUT MYSELF ON WHT TJE 6 DSY PREDIDONE PKG
IS AND TYLENOL. DOING MUCH BETTER I DONT KNOW IF I WANT TO GO BACK TO METHOTREXATE . ONLY ON IT A SHORT TIME.

Jump to this post

@dahliamama I have had no flare ups. Beginning to feel
Good again. So happy ,and I listen to my Dr and do everything he tells me to do.
Sending prayers of hope and strength for you
Donna

REPLY
2 replies
Profile picture for tweetypie13
tweetypie13 | @tweetypie13 | Feb 5 8:29pm
In reply to @beauty44 "@dahliamama I have had no flare ups. Beginning to feel Good again. So happy ,and I..." + (show)
Profile picture for beauty44 @beauty44

@dahliamama I have had no flare ups. Beginning to feel
Good again. So happy ,and I listen to my Dr and do everything he tells me to do.
Sending prayers of hope and strength for you
Donna

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@beauty44 how long in remission?

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beauty44 | @beauty44 | Feb 6 1:15pm
In reply to @abbeyc "@dadcue yes I went off prednisone in May2025 and the onchologist assumed I had Addrenal insufficiency..." + (show)
Profile picture for abbeyc @abbeyc

@dadcue yes I went off prednisone in May2025 and the onchologist assumed I had Addrenal insufficiency but the cortisol tests proved otherwise. I was very slow and careful with my Prednisone taper to avoid adrenal issues.

Jump to this post

@abbeyc

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1 reply
Profile picture for beauty44
beauty44 | @beauty44 | Feb 6 4:36pm
In reply to @beauty44 "@dahliamama I have had no flare ups. Beginning to feel Good again. So happy ,and I..." + (show)
Profile picture for beauty44 @beauty44

@dahliamama I have had no flare ups. Beginning to feel
Good again. So happy ,and I listen to my Dr and do everything he tells me to do.
Sending prayers of hope and strength for you
Donna

Jump to this post

@beauty44

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