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

Posted by abbeyc @abbeyc, Dec 16 3:01pm

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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ddonnagirl1 | @ddonnagirl1 | 6 days ago
In reply to @abbeyc "@ddonnagirl1 yes you should try it. My GP put me on LDN (without my Rheumatologist knowledge)..." + (show)
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@ddonnagirl1 yes you should try it.
My GP put me on LDN (without my Rheumatologist knowledge) because she is less conservative and turns to non-conventional treatments. The goal was for LDN to help get me off prednisone which maybe it did do. Hard to say. I started it 2+ years ago. I’m afraid to go off it because I don’t know what type of pain could return. I may try to some day.

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@abbeyc
Thank you for responding, has the LDN worked? Are you completely pain free? How long did it take for the pain to subside and how long did it take to get off the prednisone?

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codfish38 | @codfish38 | 6 days ago

Diagnosed with PMR in 2024, however it took a few years to get the diagnosis!
Prednisone was like a miracle drug, but I’m well aware of side effects. Was off for 3 months after 15 months of treatment, had a flair, and am back on 3mg. This dose takes care of about 75 percent of pain and allows me to function fairly normally. I just started LDN 1mg to increase by 1mg every 2 weeks to max 4.5mg. Three months supply was $56. My rheumatologist would not prescribe it, but my PCP would. It has way fewer side effects than methotrexate and biologics. I hope it allows me to wean off prednisone.
I’m also really trying to stick to an anti inflammatory diet as well.

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abbeyc | @abbeyc | 6 days ago

Wow those must have been a miserable few years before your diagnosis

That’s great price for LDN. I started with 4.5mg right off the bat. Maybe that’s why mine is more expensive too at 5mg.

Anyway. In hindsight I learned that those flares had each time I tapered down to 1mg were probably never PMR. I think we have all been fooled to believe they are.

Anyway keep at it. You’ll get there!

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abbeyc | @abbeyc | 6 days ago
In reply to @ddonnagirl1 "@abbeyc Thank you for responding, has the LDN worked? Are you completely pain free? How long..." + (show)
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@abbeyc
Thank you for responding, has the LDN worked? Are you completely pain free? How long did it take for the pain to subside and how long did it take to get off the prednisone?

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@ddonnagirl1 Hi. It’s hard to tell exactly what helped because I did so many things besides LDN including hydroxychloroquine, no alcohol low sugar. but I was able to get off Prednisone.
As many of us are commenting here many are not completely pain free and it may take several years to get there. But for me I’ll take the temporary sporadic pain just to be off prednisone. It’s so much better.

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cs48 | @cs48 | 6 days ago
In reply to @ddonnagirl1 "How funny the timing here could not be more perfect. I was diagnosed with PMR 3.5..." + (show)
Profile picture for ddonnagirl1 @ddonnagirl1

How funny the timing here could not be more perfect. I was diagnosed with PMR 3.5 years ago as well. I have gotten to 1 mg of prednisone but with the pain always returns. My Rhuematalogist is convinced it is no longer PMR. My inflammation markers have always been normal throughout the entire process. So she asked me to have x-rays taken of my hips and pelvis area, which is where the pain resides. I have osteoarthritis in both hips and she is convinced this is where the pain is coming from. She prescribed low dose naltrexone 1.5 mm to start then increase to 4.5mg. This drug is available through insurance but only at 50mg dose. It was designed to treat alcoholism, but they are finding at low doses it is helping with pain and inflammation. I had to research online who would make it at a reasonable cost. My first quote was $275 per quarter. AgelessRX is $120 with a prescription. Something worth considering. I have not received it yet but am anxious to see if it works. Good luck to you.

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Mine is similar case. Pred now 3mg . Methotrexate 20mg once a week. Shocking news received from Dr in Eye Hospital, my optical nerve has been affected. May be due to Methotrexate. Any such case and remedy for it will help me.

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rosi75 | @rosi75 | 5 days ago

I went to my rheumatologist last week and mentioned I was in this support group and he made me feel as if I shouldn't be here and was questioning whether I have PMR at all (??) - what a roller coaster... So I decided to come off prednisone myself and have been off it for a week now. The pains and discomfort have increased but I listen to hypnosis for pain 2x/day and it helps keep me grounded and calm.

I read about the withdrawal phase in https://canadiancentreforaddictions.org/prednisone-withdrawal/ and am trying to let myself go through this uncomfortable phase and see if I can ride it out. Apparently the 2nd week is rough but I'm thankful it's Christmas so I'll be distracted a lot.

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Mike | @dadcue | 5 days ago
In reply to @rosi75 "I went to my rheumatologist last week and mentioned I was in this support group and..." + (show)
Profile picture for rosi75 @rosi75

I went to my rheumatologist last week and mentioned I was in this support group and he made me feel as if I shouldn't be here and was questioning whether I have PMR at all (??) - what a roller coaster... So I decided to come off prednisone myself and have been off it for a week now. The pains and discomfort have increased but I listen to hypnosis for pain 2x/day and it helps keep me grounded and calm.

I read about the withdrawal phase in https://canadiancentreforaddictions.org/prednisone-withdrawal/ and am trying to let myself go through this uncomfortable phase and see if I can ride it out. Apparently the 2nd week is rough but I'm thankful it's Christmas so I'll be distracted a lot.

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@rosi75

This is the second time I have seen this link ... are you Canadian?

It doesn't matter where you are from --- I just want to say --- thank-you Canada. This is an excellent link to fantastic information!

I just wish that the information wasn't from the Centre for Addictions. Prednisone isn't "addictive." Prednisone is sneakier than an addictive substance like a narcotic. After secondary adrenal insufficiency happens, our body will start to tell us that it is "dependent" on prednisone.

I don't think this Mayo Connect forum is that bad for you. I have seen other online forums which seem to promote the use of long term prednisone way too much. Certain people on other forums are allowed to give out medical advice contrary to what a doctor will advise. I can see how doctors get negative impressions from online forums. I guess we are free to chose whoever we want to listen too.

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maddawg753 | @maddawg753 | 3 days ago
In reply to @noti "I was initially feeling so much worse after tapering and then stopping prednisone that I was..." + (show)
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I was initially feeling so much worse after tapering and then stopping prednisone that I was exercising less, and I believe that I became so weak at that point that I was actually injuring myself. That's when I went back to physical therapy. I didn't really improve until I realized that in my case I had to put up with a certain amount of pain during and after exercise to be able to rebuild my strength.
Good luck, I hope you can find a solution that works for you.

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@noti Thank you for your openness. I am recently a new PMR candidate. It sucks. But that’s life, will learn to deal with it. Nice to hear what works and what doesn’t.

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noti | @noti | 3 days ago
In reply to @maddawg753 "@noti Thank you for your openness. I am recently a new PMR candidate. It sucks. But..." + (show)
Profile picture for maddawg753 @maddawg753

@noti Thank you for your openness. I am recently a new PMR candidate. It sucks. But that’s life, will learn to deal with it. Nice to hear what works and what doesn’t.

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It really does suck. Good luck navigating your way towards recovery. I wasn’t convinced that I would ever get better until suddenly I did.

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tweetypie13 | @tweetypie13 | 3 days ago
In reply to @noti "It really does suck. Good luck navigating your way towards recovery. I wasn’t convinced that I..." + (show)
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It really does suck. Good luck navigating your way towards recovery. I wasn’t convinced that I would ever get better until suddenly I did.

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@noti
Yea….yes, we do have moments of better…….then longer periods and voila!
12/28 will be 2 yrs since I had a major bike fall which, 99% probably triggered my PMR………wait for it…………I’m doing really GOODDDDDD.
My goal, no longer discuss PMR, my health, with anyone except my drs., trainer specialist, my husband or very close support circle.
(I will continue to support and report into this wonderful group)
Have faith!

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