Connect
← Return to Intimations of life after PMR
Discussion
Comment receiving replies
@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".
Replies to "@dadcue Mike, I read your posts often and appreciate your insights and experience. I am overwhelmed..."
Connect
@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.