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Thank you for your reply, @johnbishop. I agree about staying on top of my situation and I am monitoring things with my PCP and my Ophthalmologist. I'm just curious about the actual chances of developing a stroke, heart attack or even blindness and I would like hear from people who have experienced these events. My sympathies are with all of you experiencing this insidious disorder! It ain't fun!
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@docmeehan Hello! Did you ever get the information that you were looking for a year ago? I have the same question now (April 2026). I declined the biopsy for GCA because I was already on Prednisone for a several weeks and my understanding is that it's quite possible to get a false negative. I was treated with 60 mg. of Prednisone for a week or so, followed by 40 mg. I was given the go ahead to taper because my inflammatory markers are now normal.
My PMR symptoms were hip/groin. I had no shoulder involvement or severe headaches. I've had a peculiar itch on the crown of my head with light tenderness for several months. Now that I'm tapering, I'm more aware of a dull headaches. But I have read that Prednisone on its own can cause headaches for different reasons. Needless to say, I can't quite relax about this GCA business. I also declined the Actemra at this time for different reasons. I am being monitored by Rheumatology and I had my annual eye exam.
I've chosen to remind confident that I will have a successful taper and remission.
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Hi @docmeehan, You might find it helpful to scan through the search results for other discussions and comments from members who have experience with GCA and vision problems. Here's a search link that lists the discussions and comments - https://connect.mayoclinic.org/search/