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

@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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@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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Hello @merkadale1943, I would like to add my welcome to Connect along with @legendts and other members. I'm happy you found this discussion so that you know you are not alone and can ask questions and share your experiences. Do you mind sharing what you were searching for when you found Connect?

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You must remember the goal is to reduce only to where you feel little or no pain, not to reduce to 0 mgs Prednisone. You must also consider whether your adrenal glands have awoken enough to produce the cortisol that pred has taken the place of. PMR is unpredictable as to when it goes into remission or into a flare.
No doctor has told me not too drink alcohol. A question was asked on another forum about what their favorite alcoholic drink was and most responded. Because I also have an ulcer, I have stopped drinking wine but I do have a daily brandy coffee with honey.

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@peggyp

You must remember the goal is to reduce only to where you feel little or no pain, not to reduce to 0 mgs Prednisone. You must also consider whether your adrenal glands have awoken enough to produce the cortisol that pred has taken the place of. PMR is unpredictable as to when it goes into remission or into a flare.
No doctor has told me not too drink alcohol. A question was asked on another forum about what their favorite alcoholic drink was and most responded. Because I also have an ulcer, I have stopped drinking wine but I do have a daily brandy coffee with honey.

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Regarding my ulcer, I should add that it was caused by Ibuprofen taken in large quantities without food before PMR diagnosis.

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I’ve had PMR for almost 6 years. I was told by my Dr. that they could tell by how fast the disease reacts to Prednisone. It’s a wonderful drug but it is difficult do get off of. I took my first Moderna vaccine and 5 days later had a flare up. We back up to 3mgs from 2 the and pain went away within a few hours. I had a test a few hours ago to assess my adrenal gland output and there was not much output. So thankful that I found this site just to vent a bit and see that I’m not the only one on the PMR island.

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@josteman we are happy you have found this site as well. It is so important to feel understood and to get support from others who understand. It is also so important to keep seeking answers and improved health. Cheers to you for doing both!

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I am 84 years old and have been having severe pain in hips and back for almost a year. Diagnosed with severe arthritis of the hips and stenosis. Could not have hip replacement because of other issues. On several pain medicines which really don't help. Yesterday laying in bed trying to sleep I thought back to 15 years ago when I was diagnosed with PMR and it lasted for over two years. Went from 20 mg to 5 until I finally got off of it.. I had some prednisone that I took, 20 mg and the pain went away. I believe that I have relapsed. Don't know why the doctor didn't think of that as it is in my records and he told me once it could come back. Anxious to get up in the morning and call him to see if the tests can be done. Has anyone else relapsed after this long a period? Any one else have that long a time between relapsing? Hate to think of going through this again but I was unable to walk and spent most of my time in a chair. At least taking the prednisone I am up and around and even walking.

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