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Giant Cell Arteritis

Posted by momac59 @momac59, 4 days ago

I was diagnosed with Systemic Lupus about 30 years ago at 37. It’s been pretty mild but for the last 6 weeks I’ve been really sick. My current Rheumatologist thinks it’s one of the PMR autoimmune diseases called Giant Cell Arteritis. My inflammatory markers are through the roof; CRP 266 & ESR 78. Still waiting for all the test results to come in but in the meantime steroid injection has not helped much. I’m really worried about my eyes; have had problems losing vision especially in the last 6 months. Anyone can share more about GCA? I’ve been reading up on it but would appreciate hearing experiences from other patients. Thank you.

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momac59 | @momac59 | 2 days ago
In reply to @tsc "@johnbishop Hi @momac59, I had PMR and GCA, undiagnosed for a year. With the GCA, three..." + (show)
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@johnbishop
Hi @momac59, I had PMR and GCA, undiagnosed for a year. With the GCA, three incidents of visual disturbance in my right eye which lasted about 10 minutes. I could only see white out of my right eye. I had a temporal artery biopsy and was positive for GCA. I started on prednisone 40 mg and tapered every two weeks. I was okay for a year, then relapsed and did the prednisone treatment again. A doctor friend told me if I ever had visual disturbance again to go to the ER immediately.
Did you get a temporal artery biopsy?
I hope you can get to the bottom of this and get effective treatment.

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@tsc thanks for all the information. My bloodwork results are still coming in so haven’t had the biopsy yet. Unfortunately, I don’t do well with prednisone so Rheumatologist gave me a shot of Kenalog which seems to finally be helping a bit. But I was warned about the white light or any drastic change in eyesight or severe headache; that I need to get to ER. I live in Mesa, AZ & am SO relieved that Mayo has changed their mind & are squeezing me into their Rheumatologists after I gave them more information about my condition. I just have to wait a month. Hopefully there they will do the biopsy to confirm & come up with a treatment plan that avoids steroids??

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momac59 | @momac59 | 2 days ago

Thanks everyone for your very helpful information. This had been such a scary experience, feeling so alone & overwhelmed. Your taking the time to share has made me feel a little more hopeful and definitely not alone. Thank you!

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