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Intimations of life after PMR

Posted by pkalkstein @pkalkstein, Jun 6 10:42am

In addition to PMR I have allergic contact dermatitis, and the allergen is formaldehyde, which is everywhere. The itching and rashes grew so troublesome that I took a 20mg dose of prednisalone to mitigate them, as I had done before contracting PMR in 2022. When I arose the next day I was shocked to find that I had no symptoms at all of PMR. I had tapered over 3 1/2 years from 20 to 0.5mg of prednisone, all the while experiencing mild stiffness on arising and a few other symptoms that didn't alter my way of life. But that morning I was free! The wonderful thing, more than the freedom from minor PMR symptoms, was the psychological boost that came with that freedom. Now it is four days later, and the PMR has come back a bit, but I can bear it happily, knowing what (I hope) lies ahead when the disease retreats. The experience has taught me a good deal about our nasty disorder.

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gmdb | @gmdb | 5 days ago
In reply to @kayept "@dadcue Mike, I read your posts often and appreciate your insights and experience. I am overwhelmed..." + (show)
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@dadcue
Mike, I read your posts often and appreciate your insights and experience. I am overwhelmed with your journey; 12 years on pred, whew!
I was happily rocking along on my 10mg after PMR dx. Oct.2025. Then GCA came along. My pcp increased to 40mg. I had a rt. temporal artery biopsy confirming the diagnosis. Three days later my first rheumy visit was March 12th. She started me with Actemra infusion, keeping me on pred, of course. I switched to weekly Tyenne selfinjections one month later. That kept me from driving 1hr.each way and insurance would only cover Tyenne for self injections. It covered the Actemra infusions 100%. Go figure.....
Anyway, my rheumy has decreased pred to 30 then 20 in April,
10mg May and 5mg this month. I will be tapering 1mg per month going forward IF no flares. She says it can take 1-2+ years for some to go into remission. At least, hopefully, I'll be off the pred.
The different treatment approaches and recommendations I read that different docs take indicates to me that PMR and GCA have no standard of care. As you say, everyone is different and these autoimmune diseases can be vicious.
I pray for all of you on this forum. Yes, it takes alot of "hanging in there".

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@kayept I presume that the 1-2 years is with the Actemra. I had heard that PMR by itself takes under 2 years to die down for around only 20 to 30% of us. The median figure is given as 5 years, so 50% of are in for a long haul. But certainly the biologic drugs like Actemra seem to be improving things. Unfortunately they are still not widely available for PMR - even when its long-term and refractory - in many countries.

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