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

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

I have a question for you all. Have you noticed any difference in your stress levels? I was looking up how your adrenal glands react to the Prednisone and it happened to mention about it increasing stress levels. I know mine have gone up, but don't know if it has to do with being somewhat confined during this past year due to Corona Virus and now getting back to somewhat normal (I've had both my vaccines) and all that entails or if the Prednisone is to blame. I'm only on 4 mgs. and have been for a few months now. Don't dare go down as I feel I'm on the cusp of pain. Just over a year now with PMR.

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I have not noticed higer stress with prednisone. The higher the pain, the more stress.

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@ncgal

I have a question for you all. Have you noticed any difference in your stress levels? I was looking up how your adrenal glands react to the Prednisone and it happened to mention about it increasing stress levels. I know mine have gone up, but don't know if it has to do with being somewhat confined during this past year due to Corona Virus and now getting back to somewhat normal (I've had both my vaccines) and all that entails or if the Prednisone is to blame. I'm only on 4 mgs. and have been for a few months now. Don't dare go down as I feel I'm on the cusp of pain. Just over a year now with PMR.

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PMR lasts an average of 5.9 years. Very few are done in two years, which seems to be the belief of many doctors. Once you are on prednisone long term, it is necessary to reduce very slowly after getting to 10 mgs (reduce at 1/2 mgs and stay there for a while) because pred takes over the cortisol that your adrenal glands produce. You must 1) , give the adrenals a chance to wake up and produce cortisol, sometimes over a year. And, 2) wait for PMR to go into remission. If you go too fast you will create a flare and sometimes go all the way back to the amount you started with. If you have had a flare for a short time, sometimes upping the dose 1 or 2 mgs and then reducing to where you last felt comfortable. Go up 5 mgs, stay for a couple of days and then again go down to where you first felt little or no pain.

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@peggyp

PMR lasts an average of 5.9 years. Very few are done in two years, which seems to be the belief of many doctors. Once you are on prednisone long term, it is necessary to reduce very slowly after getting to 10 mgs (reduce at 1/2 mgs and stay there for a while) because pred takes over the cortisol that your adrenal glands produce. You must 1) , give the adrenals a chance to wake up and produce cortisol, sometimes over a year. And, 2) wait for PMR to go into remission. If you go too fast you will create a flare and sometimes go all the way back to the amount you started with. If you have had a flare for a short time, sometimes upping the dose 1 or 2 mgs and then reducing to where you last felt comfortable. Go up 5 mgs, stay for a couple of days and then again go down to where you first felt little or no pain.

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All true. Thanks.

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@peggyp

PMR lasts an average of 5.9 years. Very few are done in two years, which seems to be the belief of many doctors. Once you are on prednisone long term, it is necessary to reduce very slowly after getting to 10 mgs (reduce at 1/2 mgs and stay there for a while) because pred takes over the cortisol that your adrenal glands produce. You must 1) , give the adrenals a chance to wake up and produce cortisol, sometimes over a year. And, 2) wait for PMR to go into remission. If you go too fast you will create a flare and sometimes go all the way back to the amount you started with. If you have had a flare for a short time, sometimes upping the dose 1 or 2 mgs and then reducing to where you last felt comfortable. Go up 5 mgs, stay for a couple of days and then again go down to where you first felt little or no pain.

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Thanks. I"ll try going up to 5 mgs for a few days. I only was put on 10 mgs. to start with so have been reducing very slowly down to 4 mgs.

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@ncgal

Thanks. I"ll try going up to 5 mgs for a few days. I only was put on 10 mgs. to start with so have been reducing very slowly down to 4 mgs.

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The standard dosage is 15 to 25 mgs in the beginning. Weight of patient and/or the effectiveness of the pills has much to do with dosage. You are at the level where your adrenals are effected.

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I was diagnosed with PMR in 2000. I am still experiencing problems, although I am down to 4 mg prednisone. Also taking methotrexate and dapsome. Had to stop plaquenil due to eye damage. After all these years on prednisone, I also have discoid lupus. I now have osteoporosis, even with prolia, and have experienced many fractures. So here is my question: Has anyone else had PMR that long (21 years)? The literature says it will often resolve in 3 - 5 years.

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@lbminichillo

I was diagnosed with PMR in 2000. I am still experiencing problems, although I am down to 4 mg prednisone. Also taking methotrexate and dapsome. Had to stop plaquenil due to eye damage. After all these years on prednisone, I also have discoid lupus. I now have osteoporosis, even with prolia, and have experienced many fractures. So here is my question: Has anyone else had PMR that long (21 years)? The literature says it will often resolve in 3 - 5 years.

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Hello @lbminichillo, Welcome to Mayo Clinic Connect. I think the reference to PMR resolving itself in 3 to 5 years is a guestimate and they really do not know and can't tell you. Each of us are different in how we react to the condition and the different treatments. I've had 2 occurrences of PMR spaced 6 years apart with the first one lasting 3-1/2 years and the second one lasting 1-1/2 years. I was started on 20 mg prednisone both times and the tapering off was tricky. I learned to do it in small amounts which I'm guessing is what you have tried. My rheumatologist was always asking me if I had any pain around my temples or scalp because Giant Cell Arteritis (GCA) is often a condition associated with PMR.

"PMR may last from one to five years; however, it varies from person to person. Approximately 15 percent of people with PMR develop a potentially dangerous condition called giant cell arteritis." -- Polymyalgia Rheumatica - Arthritis Foundation: https://www.arthritis.org/diseases/polymyalgia-rheumatica

There are other conditions that mimic PMR which may be one of the reasons why PMR can be difficult to diagnose.
- Conditions mimicking polymyalgia rheumatica: https://www.reumatologiaclinica.org/en-conditions-mimicking-polymyalgia-rheumatica-articulo-S217357431170034X

Has your rheumatologist suggested any lifestyle changes like foods to eat or avoid and exercises to help?

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i am so grateful to find this forum thought i was alone in having these awful symptoms so it reassuring to know that there are others who can share their advice good luck to you all.

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@merkadale1943

i am so grateful to find this forum thought i was alone in having these awful symptoms so it reassuring to know that there are others who can share their advice good luck to you all.

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You are definitely not alone here. Sorry you had to join us but so much valuable information from peoples experiences. Good luck to you and a quick (relatively) remission.

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