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Start Actemra?
Hello everyone again,
Need some opinions please. Over the last 12 months, had second Covid, terrible flare, increased hand and feet pain, slightly elevated Sed rate, jaw pain and headaches. Asked Rheumatologist for Actemra and ultrasound with no conclusive evidence of GCA. Ophthalmologist was negative findings. Had stopped methotrexate and Kevzara because of side effects.
Feeling better with symptoms but find I’m so slow getting going and trouble focusing. Just wondering if I should start Actemra when feeling better? I do think I definitely have inflammation going on. Also decreasing prednisone 1 mg per month, now at 9 mg.
I realize we are not doctors here but there is a lot of good information and feedback here.
Thank you everyone.
Karo89135
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I personally don't think Actemra will work if Kevzara didn't work. That doesn't mean you shouldn't try Actemra so I would defer to your Rheumatologist.
My rheumatologist wasn't sure that Actemra would work for me ---it was an "educated guess." My rheumatologist knew more than I did because some people on the internet almost convinced me that I shouldn't try Actemra. They said prednisone was the "only option" for PMR and the side effects of Actemra were too risky. In my case, they were wrong on both counts.
For me, Actemra was only tried as a "last resort" and because I was unable to taper off prednisone. Actemra still isn't FDA approved for PMR because the research hasn't been submitted to the FDA. My rheumatologist was excited about the research that showed it was helping GCA patients. He commented that if Actemra works for GCA then Actemra "should work" for PMR too. Actemra has worked extremely well for me at least.
Yes, makes sense.
Kevzara gave me massive chest burning , then hard scab like nodules. Sort of hesitant to use anymore biologics but will try anything to get less pain and back to some sort of normal. Of course I'll ask the rheumatologist but I'm the one who suggested it. Was never offered options. This new guy is a dud, sorry to say.
Thanks dad for your input!
Karo89135