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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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My situation exactly. I feel for you. It’s so very frustrating and hard to get answers out of the medical system. It takes months and months of one’s life. I’ve been referred to Sports Medicine - what is that? I don’t play any sports. Anyway, it’s a 2-month wait and then who knows. More x-rays? Steroid injections? PT? I’m thankful for this Mayo group of people who understand what we are up against, because it sometimes seems no one else does.
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2 ReactionsSuggestions that worked for me……
Yes some leg exercises in bed before getting up.
Pool walking, or exercising with pool weights noodle etc.
When sitting always have a pillow under knees, and sleeping.
Find a functional movement trainer…..my personal savior.
Chase low impact workouts, massages, exercises etc.
Try everything you can…..
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1 ReactionTry OTC Tylenol for Arthritis…..different release than other otc.
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2 ReactionsI have been taking a small dose of Prednisone for quite a long time to keep symptoms at least bearable. My dose is much less than it used to be. When the dose went down, my PMR returned exactly as you have described. I am living with it hoping that it will resolve, but it does seem to want to do that. I long for the days when I woke up and felt good. It helps to take Aleve before bed.
@lbk67
For how long are you on low dose? And how low?
All I can say is I was so depressed this was my life now forever. Sudden after 9 months the morning pains went away!!
Keep the faith !
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1 Reaction@abbeyc
I remember when my rheumatologist told me that I couldn't take Prednisone for the rest of my life. I told my rheumatologist that I had been on Prednisone for half my life already. I didn't think I had that many years left so why not take prednisone for the rest of my life?
I lost all hope of ever getting off Prednisone. I was encouraged to take prednisone for the rest of my life so that discouraged and depressed me even more. Then suddenly a different approach to treating PMR was tried. Suddenly I was off Prednisone completely for the first time in more than 30 years. Now I have been off Prednisone for 5 years.
Keeping the faith is important!
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2 ReactionsAs far as suggestions go, massage, a good sweat or steam to release toxins, some form of deep relaxation. I am trying acupuncture to target the pain and also the stress from the pain. I've recently started to tell myself that the pain is a fact, but I will not accept suffering (from my reaction to it). It's like a short circuit to my brain to keep from spiraling.
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1 Reaction@dadcue
Mike, well said….the waves of hope are in and out, and then a tsunami hits and it’s like “wow, faith is restored”.
Ditto for me. Hang in there everyone.