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

Posted by joyl263 @joyl263, 3 days ago

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 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.

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@suetex
What was the medicine in the Medicare?

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Profile picture for judy15 @judy15

@suetex
What was the medicine in the Medicare?

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@judy15
What other medicines have people taken besides prednisone?

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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!!!

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@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 -

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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…

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@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.

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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?

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

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Profile picture for tweetypie13 @tweetypie13

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

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

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