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Do you know Dr. Tuetken? She was my rheumatologist at the University of Iowa for 15 years. I could still message her for advice and she would respond. I haven't seen her in a few years because I'm now going to the VA hospital across the street from the University. Dr Teutken saved me when PMR was diagnosed. I had many problems that cropped up after PMR was diagnosed.
I really think I can stop Actemra. I believe PMR is gone too. I had a couple of "interruptions" when Actemra was stopped but it was restarted. I didn't do well when Actemra was stopped. Now there seems to be a reluctance to ever stop Actemra.
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I had Dr. Scott Volgesang. Very nice man with a sense of humor that I also appreciate. He was the mentor for my local rheumatologist. I went to him for confirmation of PMR. I also had it confirmed at Mayo. They both believed my current rheumatologist is following the correct treatment plan.
Going off Actemra might be a good choice for you. I don’t believe I will ever do a biologic again. It changed my life forever in a negative way by the suppression of my immune system.
I was did with PMR in 2012. It was HORRIBLE. My ESR and CRP were off the charts. Good old prednisone came to the rescue with 60mg. I already had osteopenia so within 6 months that changed to osteoporosis due to compression fractures in back and pelvis. PMR generally is a temporary disorder that lasts for months may go longer. It took me 2+ years and 4 rheumatologists for ME to figure out I have Seronegative RA ( which 30% of RA patients have). I then went thru all the typical pill form of pill forms as well as Methotrexate shots to control it. I eventually moved on to Remicade infusions which finally got it into control.
My advice question everything and research and go on blogs like this. Best of Luck! 🌸
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I di not know hər as I live in Pa.