1. < Polymyalgia Rheumatica (PMR)
Profile picture for bren2023

PMR without ever taking prednisone

Posted by bren2023 @bren2023, May 20, 2025

Is anyone here living with PMR without ever taking prednisone or any other pharmaceuticals ?
I am still trying to get a diagnosis but I have all the symptoms of PMR but the labs don't show it. I have flare ups that are really bad for weeks and then at times 50% better for no reason. My pc doctor said "no that doesn't happen with PMR" but she has no idea what I do have. I have a confirmed by biopsy auto immune condition of the scalp called lichen planopilaris that was treated with steroid oil.

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

Profile picture for skritch
skritch | @skritch | May 11 10:07am
In reply to @dadcue "@jabrown0407 The immune system is fascinating the more you read about it. Inflammation gets a bad..." + (show)
Profile picture for Mike @dadcue

@jabrown0407
The immune system is fascinating the more you read about it. Inflammation gets a bad rap when the immune system goes haywire when we have an autoimmune condition. Inflammation is a good thing as long as the body regulates it with a hormone called cortisol. I finally reached the conclusion that I was foolish to think that I could regulate my inflammation with prednisone. I thought that I knew how to take prednisone and taper off again. I eventually had to concede that I had no idea what I was doing when I took prednisone.

I have moved on from cytokines like IL-6 because I will never understand cytokines. Some are pro-inflammatory, some are anti-inflammatory and some are both. There is a communication network where all these hormones and cytokines “talk” to each other and to respond appropriately as necessary. There was no way to take prednisone only when needed and at an appropriate dose and time.

My body used to regulate my inflammation and cortisol levels but without me knowing. My immune system kept me very healthy too until I was diagnosed with PMR and took prednisone.

Jump to this post

@dadcue
Yes, I believe Prednisone has consequences. Beware

REPLY
Profile picture for dougrout
dougrout | @dougrout | May 17 9:03am
In reply to @cwbf "According to my PCP, some cases of PMR simply do not show up in the blood..." + (show)
Profile picture for cwbf @cwbf

According to my PCP, some cases of PMR simply do not show up in the blood work. When that is the case, the diagnosis is made by eliminating other possible conditions and by noting the patient's reaction to prednisone. If prednisone brings almost immediate relief that can be a diagnostic for PMR, even if your bloodwork does not show PMR>

Jump to this post

@cwbf That is kind of the case with me. My sed rates and C reactive protein were elevated, but not off the charts and actually my CRP was just barely over the normal high end! But all my symptoms and pain suggested that I have PMR. I was given an initial dose of 10 mg prednisone and within 2 days I had no pain. So that pretty much suggested that I had PMR. This was in mid October 2025 and I have had complications since, even possible giant cell arteritis. I have had bone density check, MRA on head, neck and chest, been to the ophthalmologist 3 times and all looks good! I was up to 60mg prednisone but am now slowly reducing and am on 10mg.

REPLY
Profile picture for cwbf
cwbf | @cwbf | May 17 11:45am

Very glad to hear you are doing better. 10 mg was a low starter dose. No surprise you had to go up. Others report that the taper down from 10 can be a hard one because the prednisone has stopped your adrenal glands from functioning and it takes time for them to wake up and start supplying natural cortisol. I had that problem and am now on the biologic Kevzara which has helped significantly with the taper and the PMR. I am now at 2mg a week and tapering at the rate of 1mg a week. Hope you continue to do well as you taper from 10.

REPLY
Profile picture for kjoed53
kjoed53 | @kjoed53 | 6 days ago

My sister had PMR several years ago and wouldn't take prednisone because of the side effects, so she took ibuprofen constantly. I'm not sure how she thought that was better but I know she lived in pain for the better part of a year. I was diagnosed this year with PMR. My pain before diagnosis didn't respond at all to ibuprofen. I had to be very cautious with the absolute minimum of walking with a cane due to the hip girdle pain and only sleeping 2-3 hours a night. I couldn't even drink a cup of coffee or water without shoulder pain. I didn't hesitate to take prednisone.

REPLY
Profile picture for ampmr2025
ampmr2025 | @ampmr2025 | 6 days ago
In reply to @tweetypie13 "@cyndiefromnc True words. Have you tried OTC Tylenol for Arthritis occasionally for relief? Works for me..." + (show)
Profile picture for tweetypie13 @tweetypie13

@cyndiefromnc
True words. Have you tried OTC Tylenol for Arthritis occasionally for relief? Works for me on strenuous days…hike, bike golf.
Keep up the great work.

Jump to this post

@tweetypie13 celecoxib2 works for to block IL-6

REPLY
Profile picture for gmdb
gmdb | @gmdb | 6 days ago
In reply to @bugfen "@robinleslie make prednisone your LAST choice…ALEVE does wonders." + (show)
Profile picture for bugfen @bugfen

@robinleslie make prednisone your LAST choice…ALEVE does wonders.

Jump to this post

@bugfen it's a bit of damned if you do, damned if you don't. Taking NSAIDs like Aleve on regular long-term basis can have serious side-effects including
cardiovascular and kidney damage, as well as stomach bleeds. Chances are if you don't need to use NSAIDs everyday to alleviate PMR, then it's a very mild case or something entirely diffedent. There are no good answers to PMR - the biologic drugs may eventually be thing that works the best and are the safest. Certainly @dadcue experience with Actemera has been encouraging to read about.

REPLY
Please sign in or register to post a reply.