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Off Prednisone but still feeling new type of pain
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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@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?
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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1 ReactionWow 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!
@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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1 ReactionMine 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.
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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2 Reactions@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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2 Reactions@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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3 ReactionsIt 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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2 Reactions@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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4 Reactions