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PMR - What do you wish you had known . . .
Polymyalgia Rheumatica (PMR) | Last Active: 6 days ago | Replies (163)Comment receiving replies
@p0rtia I was started on 20mg which mostly worked, but then almost immediately lowered to 15mg, when all PMR symptoms returned. Doc then moved me up to 30mg. No matter the level of Prednisone I have multiple life-changing side effects from the prednisone. At least as hard to live with as the acute phase of PMR - maybe worse! But my situation may be different as my Rheumy and I are certain I had the PMr for at least 6 months before the 'acute' flare when I couldn't even walk! So perhaps that's why I need such a high dose? Anyone else comment on this?
Replies to "@p0rtia I was started on 20mg which mostly worked, but then almost immediately lowered to 15mg,..."
@sbgigi
Did you ask your Dr. to explain clearly why they decided on giving you 30 instead of 20 mg? Maybe it was the severity of your symptoms coming back? I would definitely ask. I always ask direct questions like that to get those answers from the doctor who has made those decisions so I don’t have to wonder. I have learned to advocate for myself over the decades of dealing with autoimmune diseases & a big part of that is learning as much as I can about my disease and about the treatments. And that includes asking questions.
I, too have a lot of bad side effects from steroids. They have been a lifesaver but now that I’m better from recent GCA/PMR firestorm, I’m tapering slowly off prednisone. I was getting symptoms back when going from 30mg. to 20 so my Rheumatologist added a weekly shot of Actemra & it is helping me already. I will be trying to reduce prednisone dose tomorrow & am hopeful I am still ok. I am staying in touch with my Rheumatologist during this process. He wanted me to let him know what symptoms are coming back at each reduced dose.
Have you asked your doctor if you could try one of the biologics to try to help you taper off steroids?
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@sbgigi Thanks for the detail. Wow. So tough. <3 Okay, here's me: I first became aware that my shoulders no functioned as they should 2.5 to 3 years ago. Because I had previsiously had bilateral statin-induced myopathy in my thighs and biceps, I thought it was that (I had been switched to a different statin). No amount of PT or massage helped.
About 18 months ago, I had a prolapsed biceps tendon in my left shoulder--only a guess, but my belief is it happened because my biceps, and by that time my deltoid, was so incredibly tight. I PT'ed that with some success--in the sense that the tendon did not prolapse anymore--but I could not raise my left arm for anything. Could raise right arm but not do much with it.
A year ago June, my PCP introduced me to the term PMR and did the inflammation tests for the first time: SED was 70 and C-RP was 1.9 mg/dL Made appointment with rheumy for October. In Jan my SED topped out at 104 and C-RP at 3.2. That's when I found y'all.
So my sense is that I've had PMR for years. And yet within hours of that first 15 mg of prednisone, the symptoms started to lessen, and in four days they were gone. My shoulders were still a mess, but daily PT now does the trick.
No rhyme or reason, is there.