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Is it really PMR if symptoms aren't upon awakening?
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.
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Have read about Kevzara - make sure you understand side effects/ramifications of Kevzara. Evidently it does help some people get off Prednisone permanently. Hope it works for you.
@joyl263, There are other conditions that mimic the symptoms of PMR - https://www.medicalnewstoday.com/articles/diseases-that-mimic-polymyalgia-rheumatica. 9 months is fairly short period of time to be able to taper off of prednisone. What was your starting dose? Did you take it morning, evening, once to twice daily?
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3 ReactionsI would also ask about the interval between injections/infusion to reduce the amount of Kevzara is in your system. They have both a 150mg injection and a 200mg injection available. I would suggest you lobby for the lowest amount for starters with an understanding that increasing to a larger dose or shortening the interval between treatments will be on the table when the lowest dose does not block the pain.
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1 Reaction@johnbishop, joy1263, and all... I have the same suspicions about your symptoms. My PMR flares have been quite severe, with extreme shoulder and hip pain. Immobilizing. And, on waking, unable to move, can't turn over, really tough getting out of bed, or even in a different position. And, I was put on a fairly high dose of Prednisone for over a year, with extremely slow tapering to get it down to a manageable dose of 10mg daily. From 20mg...
Autoimmune diseases, I am finding, are very personal re symptoms, but have similar basic, underlying telling issues that scream out. I have Sarcoid, PMR, GCA, Vasculitis, and a couple of other issues that are probably in the same area, but I'm ignoring anything else at this point. My hands are full dealing with these guys! But, when these diseases flare, I know it and am out of commission for weeks, taking months to get back to a workable state.
I hope you get the answers you need and can resume your life. Blessings, Elizabeth
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2 ReactionsMy pmr pain was worst overnight disrupting sleep and relieved somewhat by getting up in the morning.
An atypical pmr presentation, but positively confirmed by PET scan.
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2 ReactionsI also have been diagnosed and my symptoms are better in the morning as well. My main symptoms are shortness of breath, malaise, fatigue, aches and pains. In flareup it's like a semi truck rolled over me.
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3 ReactionsI 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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1 Reaction@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…
Why does every rheumatologist offer only Kevzara? IT has terrible side effects!! What other medicines is out there for PMR?
@brittg
did it work for you or did you get some side effects. I really don’t want to take it!!!