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PMR/GCA

Posted by docm @docmeehan, May 8, 2025

Hello everyone, I am dealing with PMR/GCA and have experienced some brief episodes of double vision which my Ophthamologist says are inconsequential. I am slowly tapering the prednisone according to my own schedule. My question is have any of you ever actually experienced a stroke or heart attack related to your PMR/GCA? I'm just curious. I have been dealing with this disease for eight months and I really feel for those of you who have been at it for even longer than that.

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kjoed53 | @kjoed53 | Apr 6 6:21am
In reply to @pah17 "@kjoed53 Thank you. I think I want to have that conversation with my Rheumatologist to be..." + (show)
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@kjoed53 Thank you. I think I want to have that conversation with my Rheumatologist to be sure. I started out well with him. Still like/trust him. But with any busy office, I'm not sure he has lasting patience for questions coming from patients like me who have limited insurance. His office got emergency authorization for Actemra. And I appreciate that. I will still be paying over $700.00 out of pocket each month for the IV infusion for who knows how long. After my $2,000.00 max out of pocket, I'll be OK for this year. So, I haven't ruled that out if need be.
I also declined the biopsy because I was already on Prednisone for several weeks. He bumped be up to 60 mg. for GCA.
Another situation has presented itself wherein I need a tooth extraction and we both agree that it might not be a good time to introduce yet another med to the picture. Besides Prednisone I'm new to Eliquis, a blood thinner and I've been on Boniva.
He knows that I'm not convinced that I have GCA. Really my only symptom is an itchy scalp (crown of head) and sometime dull headache which doesn't even call for pain med ~ more what I feel when I'm hungry or dehydrated. My Rheumatologist does admit that GCA is very difficult to tweak out. Really, my head hurts just having to think about all of this day in and day out.
I am forever grateful that I have insurance, that I live in an area where there are exceptional practitioners and that I didn't deal with the PMR pain for very long at all. Now if I have a successful taper, I will really be one of the truly fortunate ones judging from what I read from most who post here

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@pah17
Hopefully your rheumatologist doesn't provide time and care based on your insurance or financial situation. Don't feel guilty about taking up his time with any questions that you need answered. You are entitled to that. I've been on eliquis, sotalol and verapamil for years due to AFib, PVC and PAC issues and never had a problem with any of those. I have an appointment with an ophthalmologist this morning because of my concerns for GCA. Keep us posted on your progress. We're all in this together.

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