1. < Polymyalgia Rheumatica (PMR)
Profile picture for joyl263

Is it really PMR if symptoms aren't upon awakening?

Posted by joyl263 @joyl263, May 1 8:43am

I have been following multiple groups including this one to see if anyone's experience is similar to mine. I have the classic PMR symptoms (hip, thigh, shoulder and upper back ache, fatigue and weakness)except that I wake up feeling fairly pain-free in the morning. Then as I go about my day and start to get active the pain comes on with the fatigue. Rest and over the counter pain meds seem to help. I do get the stiffness in those same places after brief rest and when I'm trying to get up. My lab work shows some inflammation. I have two other autoimmune diseases, Vitiligo and alopecia areata. It's so confusing to me that I don't have the worst of my symptoms when I wake up. I wonder if there's anyone else out there that has a similar experience or am I misdiagnosed? I do see a rheumatologist and I was diagnosed after finding relief with prednisone. I ended up being on it for 9 months and slow tapering off and within a week my symptoms came back. Now she wants to start me on kevzara.

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

Profile picture for judy15
judy15 | @judy15 | May 3 6:58pm
In reply to @suetex "I had PMR a few years back and was treated succesfully (pred) for it. Recently, I..." + (show)
Profile picture for suetex @suetex

I had PMR a few years back and was treated succesfully (pred) for it. Recently, I had a mediport installed and the surgeon used a general anesthia on me. I woke up fine but soon had a PMR like (but much worse) reaction. Not wanting to take pred I dicided to tough it out-and no one would listen to me anyway. It was 4 days before it started to get better. Then it was over a week before I was normal. Told my PCP about it so it could be recorded.

Jump to this post

@suetex
What was the medicine in the Medicare?

REPLY
2 replies
Profile picture for judy15
judy15 | @judy15 | May 3 7:43pm
In reply to @judy15 "@suetex What was the medicine in the Medicare?" + (show)
Profile picture for judy15 @judy15

@suetex
What was the medicine in the Medicare?

Jump to this post

@judy15
What other medicines have people taken besides prednisone?

REPLY
Profile picture for brittg
brittg | @brittg | May 4 9:50am
In reply to @judy15 "@brittg did it work for you or did you get some side effects. I really don’t..." + (show)
Profile picture for judy15 @judy15

@brittg
did it work for you or did you get some side effects. I really don’t want to take it!!!

Jump to this post

@judy15 Rheumatologists have tried various medications trying to get me off Prednisone. I didn't react well to any of them so am just resigned to Prednisone. Currently at 15mg as I had a bad flare into my thigh - (prior flares always been in knee area) so I'm back to Square 1 - tapering back to 10mg or lower.
I won't consider Kevzara - scary reading about side effects.
Good luck -

REPLY
Profile picture for tweetypie13
tweetypie13 | @tweetypie13 | May 4 2:01pm
In reply to @judy15 "@jojam I don’t have those symptoms, I wake in the AM with muscle/joins tight and I..." + (show)
Profile picture for judy15 @judy15

@jojam I don’t have those symptoms, I wake in the AM with muscle/joins tight and I do stretches and use stretch bands and roll a ball up a wall and then walk 2 miles outside or go to a gym class every few days… I’m still on prednisone, right now 2mg but this is not enough but I can live with it…

Jump to this post

@judy15 at wake up, I use Tylenol for Arthritis, take 1 , and it has me comfortable by the time bfast is over. I have also tried 1 at bedtime and it makes the morning very easy.

REPLY
Profile picture for tweetypie13
tweetypie13 | @tweetypie13 | May 4 2:02pm
In reply to @judy15 "Why does every rheumatologist offer only Kevzara? IT has terrible side effects!! What other medicines is..." + (show)
Profile picture for judy15 @judy15

Why does every rheumatologist offer only Kevzara? IT has terrible side effects!! What other medicines is out there for PMR?

Jump to this post

@judy15 Kevzara is my savior, nor side effects, also not on any other drugs.

REPLY
1 reply
Profile picture for tweetypie13
tweetypie13 | @tweetypie13 | May 4 2:04pm
In reply to @tweetypie13 "@judy15 Kevzara is my savior, nor side effects, also not on any other drugs." + (show)
Profile picture for tweetypie13 @tweetypie13

@judy15 Kevzara is my savior, nor side effects, also not on any other drugs.

Jump to this post

@tweetypie13 PS:….: I never read anything abt bad side effects with Kevzara.

REPLY
Profile picture for redboat
redboat | @redboat | May 5 5:13pm

At least for me, PMR pain is 24/7. Since mine was quite severe and 20 mg of Prednisone was not enough, a diagnosis of GCA was made (although no swelling of arteries in my head was ever seen) and I was put on tocilizumab. For me, tocilizumab is wonderfully effective with minimal side effects, and thankfully allowed me to get off Prednisone. I am told tocilizumab and kevzara are similar biologically, both targeting IL-6, but not identical.

REPLY
Profile picture for janiceem
janiceem | @janiceem | May 6 7:49am

I had such a mild case that I only hurt while I was in bed. It took 4 months to diagnose because my labs were normal. Predisone immediately took away my pain and I tapered off of it in about a year. I started with just 10 mg. Hope this helps.

REPLY
2 replies
Profile picture for csimmonds
csimmonds | @csimmonds | May 6 8:52am
In reply to @janiceem "I had such a mild case that I only hurt while I was in bed. It..." + (show)
Profile picture for janiceem @janiceem

I had such a mild case that I only hurt while I was in bed. It took 4 months to diagnose because my labs were normal. Predisone immediately took away my pain and I tapered off of it in about a year. I started with just 10 mg. Hope this helps.

Jump to this post

@janiceem My experience is similar to yours. I started with higher dose of prednisone probably because inflammation marker was high at beginning. It has been a year and a month and I have tapered to 1 but have trouble going lower, even 1mg every other. I am at a point of deciding whether to go off prednisone and accept my pain in bed, which is getting worse.. Every morning I have to remind myself that it will get better when I get out of bed, start moving, and even do some stretching exercises. Such a strange disease.

REPLY
1 reply
Please sign in or register to post a reply.