Hi everyone. Last June I became a member of the GCA club, though not by choice. I wanted to share my story in case others experience somethig similar. It began like a common virus; sore throat, runny nose, mild fever of 100.5. I thought it might be covid, so got tested and was negative. I had been fully vaccinated and at that time, prior to the variants, we thought we were very well protected. I talked to my doctor, and was told to come in to the office if the fever did not subside in a week or so. It did not get better, so I went in. Blood tests were done, but it was not evident where this "fever of unknown origin" was coming from. It did not improve, so I was told to go to the ER, where they had access to additional tests. Again, no clear reason for my fever, chest congestion, and worsening cough. I also was unusually fatigued, falling alseep much earlier than normal. I did have scalp sensitivity, but no jaw pain or vision issues. My symptoms were like a really bad cold with a persistent fever.
My primary doc could not figure it out, so he referred me to rheumatology and infectious disease. After a few days, and much to my surprise ,I got a phone call from the rheumatology clinic saying that a doctor wanted to talk to me right away. I was glad to hear that, as I was feeling pretty lousy. We did a virtual visit, I described my symptoms, and he said it was likely something called Giant Cell Arteritis. He immediately started me on 60mg of prednisone, and I schedued a biopsy a week or so later. The biopsy was not definite for GCA, nor did it rule it out. My blood work indicated a very high sed. rate . I responded quickly to the prednisone, feeling better quickly. All this led to the conclusion that I did have GCA, although not with the typical symptoms.
I started tapering off prednisone, a six month taper, along with beginning weekly Actemra injections. Fortunately, I qualified for getting Actemra for free, as it is ridiculously expensive. I got off prednisone in January and was doing great on Actemra only. Then with covid spiking, supply issues arose with Actemra, and I could not get it on time. My doc didn't want to put me back on steroids unnecessarly, so we agreed to see how it goes off the meds. Unfortunately, 6 weeks later or so I got a sore throat and began symptoms of a cold again. But this time, no temp., so I really did think it was just a bad cold. But, it did not go away after a week or so. As it turns out it was indeed a flareup, causing symptoms similar to the first time, which included the worst cough I have ever experienced. I got back on steroids, 40mg this time, and back on Actemra as the supply has improved. I am tapering by 5mg each week. I'm doing much better again, but humbly realize this disease is part of me and I'll need to keep treating it for quite some time.
Well, that's more than you probably wanted to know, but I thought I'd send my story out there. I'm especially curious if anyone else has had these cold/sinus/cough symptoms that I've experienced. Be well!
Covid-Actemra- PMR- GCA- I survived! 
Question about actemra
My start on GCA
