@dianedenise Im dealing with GCA as well. Temporal artery biopsy was negative due to 3 weeks of 70/60 mg prednisone, and delay in getting biopsy. Im seen at a university teaching hospital where my rheumatology appointment was finally brought forward. Treated now with oral prednisone in addition to Actemra , one infusion so far.
I have had some improvement, but also carry other autoimmune disease diagnoses (Primary Selective IgA deficiency, Warm autoimmune Hemolytic Anemia, celiac disease, malabsorption syndrome, falling IgG levels, autoimmune ovarian failure at age 32, etc, etc, and multiple other diagnoses.
All of this to say I continue!!!! I adapt to these changes on an hour by hour basis after many years of struggling against them. Im unable to use opioids due to severe reactions. However, my support system carries me through, and am learning so many ways of coping. Couldn't and wouldn't do this without my husband of 41 years, meditation and prayer, a small but constant group of caring friends and strong medical support. Although I am DNR and my life has been saved from septic shock recently, I feel blessed to be alive in a broken body and experience whatever life sends.
May YOUR experience improve, and hope is my byword....there is something good in every hour of every day.