How to address PMR pain while decreasing prednisone

Posted by barbararene @barbararene, Feb 13, 2017

I have been diagnosed w poly myalgia rheumatica (pmr). Am taking 5 mg of predisone, was taking 10mg.
Every time I go on a low dose, symptoms come back. I can't take pain meds, but do drink wine to ease pain, although I'm told no alcohol w prednisone. Anything you can share as far as info

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@peggyp

Once you get to 10 mgs, reducing by 1/2 mg is recommended. Never reduce more than 10%. You want to reduce to the amount that takes care of the PMR inflammation but no lower, otherwise the inflammation keeps growing until you have a flare. If the PMR is gradually going into remission, you then have to make sure the adrenals are working before going any lower. The adrenals create cortisol, the equivalent of 6 or 7 mgs prednisone. Your body stops making cortisol when you are on pred for a long time. It takes a year or longer for adrenals to begin making cortisol again. Some adrenals do not recover and prednisone takes over. The slower you reduce, the greater chance for the adrenals to awaken.

I was on 6/7 mgs pred for almost two years. I am in my fifth year of PMR and am on 3 1.2 mgs. I would be lower except for an arthritic hip for which I am awaiting hip replacement. I use the following method (Dorset Lady's) to reduce: Sun-new dose other days old dose; Sun/Th new dose, other days old;SunTuTh new dose, other days old; SunTUWTHU new dose, others old; SunTUWThSat new, MF old; the following week all new dose. It is easy to stop if the new dose shows signs of a flare and prevents seesawing up and down..
.

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I have a question and a concern. I have PMR and have reduced (1 mg a month) now at 1.5. I certainly don't feel pain and discomfort like I did when I started on prednisone, but the last 2 weeks or so I have experienced slight discomfort in my neck, hips and thighs. It is certainly manageble and doesn't keep me from going about my daily exercise or sleeping. However, I read about others going up and down on prednisone to manage the pain and reduce the inflammation. Should I expect the discomfort to go away completely before quitting prednisone or do you taper to a level that is tolerable? My worry is that inflammation is still "brewing" and I may get GCA.

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@irishdancer

I have a question and a concern. I have PMR and have reduced (1 mg a month) now at 1.5. I certainly don't feel pain and discomfort like I did when I started on prednisone, but the last 2 weeks or so I have experienced slight discomfort in my neck, hips and thighs. It is certainly manageble and doesn't keep me from going about my daily exercise or sleeping. However, I read about others going up and down on prednisone to manage the pain and reduce the inflammation. Should I expect the discomfort to go away completely before quitting prednisone or do you taper to a level that is tolerable? My worry is that inflammation is still "brewing" and I may get GCA.

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I have been wondering about that very issue. It seems like we need some research into this question. I know that getting off prednisone quicker and tolerating some discomfort seemed to lead me right into a relapse, where staying between 1/2-1 mg of prednisone for almost a year led to being free of PMR for 12 years. I see mention of waiting for your body to again produce cortisone. I wonder if this process is slower when you’re older. You’re right! GCA is the fear!

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@irishdancer

I have a question and a concern. I have PMR and have reduced (1 mg a month) now at 1.5. I certainly don't feel pain and discomfort like I did when I started on prednisone, but the last 2 weeks or so I have experienced slight discomfort in my neck, hips and thighs. It is certainly manageble and doesn't keep me from going about my daily exercise or sleeping. However, I read about others going up and down on prednisone to manage the pain and reduce the inflammation. Should I expect the discomfort to go away completely before quitting prednisone or do you taper to a level that is tolerable? My worry is that inflammation is still "brewing" and I may get GCA.

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@irishdancer, I think you ask a very good question that each of us has struggled with when tapering off of prednisone. I put my tolerable pain level between 1 and 2 on a scale of 1 to 10 with 10 being I can't take any more. But I'm sure the pain scale is different for each of us. When my primary care doc was following up with me, he was always asking about pain around my forehead and temples, jaw pain, scalp tenderness and then mentioned he wanted to make sure I didn't also have GCA. My discomfort never really went totally away when I tapered off the first time but if I remember correctly it was around a 1 or a tad more. I went back and forth between 1/2 mg and 1 mg prednisone the last six months of my first occurrence with PMR before I could finally taper off with tolerable pain/discomfort.

Do you keep a daily pain and dosage log? I think it would be a great question for your rheumatologist or doctor also.

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Thank you. This is helpful. Unfortunately, I was back up to 20 (from 5) because of big flare up and had to lower 1 mg every 4 days over 1 1/2 months to prepare to get the Pfizer Covid vaccine. I just received my second shot and will have to wait two weeks to start over with higher dose and SLOW! taper. Have lots of pain (have read the shot may induce it) right now. Tramadol and Tylenol help some. Looking forward to April.

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@ste44

Thank you. This is helpful. Unfortunately, I was back up to 20 (from 5) because of big flare up and had to lower 1 mg every 4 days over 1 1/2 months to prepare to get the Pfizer Covid vaccine. I just received my second shot and will have to wait two weeks to start over with higher dose and SLOW! taper. Have lots of pain (have read the shot may induce it) right now. Tramadol and Tylenol help some. Looking forward to April.

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So sorry you’re having a rough time right now—hope things improve soon.

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@johnbishop

@irishdancer, I think you ask a very good question that each of us has struggled with when tapering off of prednisone. I put my tolerable pain level between 1 and 2 on a scale of 1 to 10 with 10 being I can't take any more. But I'm sure the pain scale is different for each of us. When my primary care doc was following up with me, he was always asking about pain around my forehead and temples, jaw pain, scalp tenderness and then mentioned he wanted to make sure I didn't also have GCA. My discomfort never really went totally away when I tapered off the first time but if I remember correctly it was around a 1 or a tad more. I went back and forth between 1/2 mg and 1 mg prednisone the last six months of my first occurrence with PMR before I could finally taper off with tolerable pain/discomfort.

Do you keep a daily pain and dosage log? I think it would be a great question for your rheumatologist or doctor also.

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Thank you all for your replies. I think keeping a daily pain log is a very good idea. One thing that having PMR has taught me is that we really need to pain attention to what our bodies are telling us and when so that we can try to become astute at differentiating PMR pain from osteo arthritis pain, from overwork injury, etc.

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I am on three mgs pred and will
Be on forever I think. Ask your pharmacist about the wine. I think it s ok. Don’t take my word for it though.

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I asked my Rheumatologist and pharmacist about having a glass of wine and being on prednisone. They both said it was okay. Sure hoping so!

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@irishdancer

I asked my Rheumatologist and pharmacist about having a glass of wine and being on prednisone. They both said it was okay. Sure hoping so!

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As long as you don't have an ulcer from taking Ibuprofen or some other similar drug to ease the pain.

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@irishdancer

I asked my Rheumatologist and pharmacist about having a glass of wine and being on prednisone. They both said it was okay. Sure hoping so!

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My doctors told me 2-3 glasses per week.

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