1. < Polymyalgia Rheumatica (PMR)

Prednisone only mildly helpful for my PMR, is this common?

Posted by ldingwall88 @ldingwall88, Jun 6, 2022

Hello, I was diagnosed with PMR about 5 days ago, symptoms started abruptly and severely on May 22. The pain has been migrating from shoulders to hips to knees and occasionally my right wrist. My doctor started me on 15mg prednisone and based on everything I've read, that should have been a game-changer. However, it doesn't seem to be working all that much: it takes my symptoms from a 7.5/10 to 5 or 5.5. and the relief only lasts a few hours. Is this normal? I have other chronic, auto-immune conditions but PMR is by far the most debilitating. I'd appreciate any advice/support/information you can offer. Thanks.

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cookiegirl1944 | @cookiegirl1944 | May 26, 2023

I was diagnosed with PMR a year ago and was placed on 30 mg of prednisone with the goal of titering down every month. When I was on 30 to 25 mg of prednisoneI felt great. No pain, no depression. I worked cleaning my house non-stop for two months. Then when I reached 20 mg, my symptoms came back like a vengeance. Initially my provider said I meet an additional medication like methotrexate but when that time came, he said he didn’t feel like giving me this medication. I then asked for a referral to a rheumatologist who said I did not have PMR. Now given the description of your symptoms, I am wondering if you too have been misdiagnosed.

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2 replies
Marilyn McFarland | @1942marilyne | May 27, 2023
In reply to @cookiegirl1944 "I was diagnosed with PMR a year ago and was placed on 30 mg of prednisone..." + (show)
@cookiegirl1944

I was diagnosed with PMR a year ago and was placed on 30 mg of prednisone with the goal of titering down every month. When I was on 30 to 25 mg of prednisoneI felt great. No pain, no depression. I worked cleaning my house non-stop for two months. Then when I reached 20 mg, my symptoms came back like a vengeance. Initially my provider said I meet an additional medication like methotrexate but when that time came, he said he didn’t feel like giving me this medication. I then asked for a referral to a rheumatologist who said I did not have PMR. Now given the description of your symptoms, I am wondering if you too have been misdiagnosed.

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I have had pmr dx for 3 years now back taking 10 mg. I do not think I am getting off. Was at 6 mg

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cookiegirl1944 | @cookiegirl1944 | May 27, 2023

How do you feel? Does the 10 mg keep your symptom at bay? Make sure you get a bone density test as I got one ( it was 18 months since my prior bone density) and I was shocked to see my spine had lost 10 percent of its bone mass plus created osteoporosis in my entire lumbar spine where 18 months prior it was just osteopenia.

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alissahe | @alissahe | May 27, 2023

I was virtually pain free 2 days after starting on 20 mg of prednisone after being basically 90% incapacitated with pain in my legs, hips, and shoulders. I’ve been tapering since then (late November) and am currently at 8 mg. with occasional hip and shoulder pain.

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nyxygirl | @nyxygirl | May 29, 2023
In reply to @cookiegirl1944 "I was diagnosed with PMR a year ago and was placed on 30 mg of prednisone..." + (show)
@cookiegirl1944

I was diagnosed with PMR a year ago and was placed on 30 mg of prednisone with the goal of titering down every month. When I was on 30 to 25 mg of prednisoneI felt great. No pain, no depression. I worked cleaning my house non-stop for two months. Then when I reached 20 mg, my symptoms came back like a vengeance. Initially my provider said I meet an additional medication like methotrexate but when that time came, he said he didn’t feel like giving me this medication. I then asked for a referral to a rheumatologist who said I did not have PMR. Now given the description of your symptoms, I am wondering if you too have been misdiagnosed.

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@cookiegirl1944 are you willing to share an update - did you actually have a mimicking disease?

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nyxygirl | @nyxygirl | May 29, 2023
In reply to @johnbishop "Welcome @ldingwall88, You are right - for PMR prednisone is a game changer. I've had two..." + (show)
@johnbishop

Welcome @ldingwall88, You are right - for PMR prednisone is a game changer. I've had two occurrences of PMR and was treating for both with a starting dose of 20 mg. My pain was gone within 2 hours and didn't start coming back until the next morning. I do not think it's common for prednisone to not help with PMR pain unless the starting dose is too low, the PMR diagnosis is not correct or you have something else going on along with the PMR like GCA. The normal starting dosage of prednisone from what I've read is 12.5 mg to 25 mg. I think it's sometimes determined by body weight. Here some information on the topic:

-- Polymyalgia rheumatica: An updated review: https://www.ccjm.org/content/87/9/549

You mentioned your doctor diagnosed the PMR. You might want to discuss your symptoms related to the dosage and still having pain with your doctor or possibly see if you can get a referral to a rheumatologist. Have you seen a rheumatologist?

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@johnbishop @cookiegirl1944 @ldingwall88 John - i have this paper in my collection too. Table 1 has a list of mimicking diseases .

And the authors state "To help avoid relapse, therapy should continue until symptoms resolve, followed by slow tapering." INCREASING from 20mg to 30 mg brought on the "miraculous" relief that others describe at lower doses, and I am splitting the dose three X 10mg. This weekend I am experiencing some swelling and pain with my right hamstring/thigh - I moved myself around in bed this morning with my ARM strength which i would never have been able to do in the last 1.5 months because of the morning stiffness/gelling phenomenon ( pre Rx and at 15 and 20mg) . Mind boggling !

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