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Giant Cell Arteritis questions

Posted by alicoo @alicoo, Jul 27 6:11am

I have been diagnosed with Giant Cell Arteritis. I began Prednisone in January 2026 and Actemra in May. I have been reducing Prednisone and had gotten down to 10mg.
I have a few questions and need advice.
I began feeling bad again about 5 days ago, beginning with the headache. I now also feel weak and shaky. I had reduced down to 10mg prednisone and was planning to go down to 9 but on Saturday I felt pretty bad and had very blurry vision, which scared me a little. So I have gone back up to 15. Vision is better but still have a headache and weakness.
So my questions are: Am I still at risk for blindness even though I am on Prednisone and Actemra? Should I increase the prednisone further? Is it normal to have these symptoms while reducing prednisone? What should I be doing?
Thanks,

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mark2471 | @mark2471 | 7 hours ago
In reply to @stonewheel "I have GCA question. Flashes of light (streaks) when quickly looking to my right. I was..." + (show)
Profile picture for stonewheel @stonewheel

I have GCA question.
Flashes of light (streaks) when quickly looking to my right.

I was dx’d with PMR in October of 2025, about 10 months ago.
It is now mid-August, I take Kevzara and have tapered Prednisone down to 1mg/day.

I had a temporal biopsy done in May of 2026, (left temple) the report was Negative for GCA.
No reason given for the tender scalp, which was why the biopsy.

4 days ago , I was caused to be awake until early morning hours before finally getting to bed.

3 days ago, in the evening (darkness) I started seeing streaks of light, in the right periphery of my right eye.
My PMR aches were elevated a bit and my E-SED & CRP (taken coincidentally the day before) had just come back slightly elevated. Hmm. I took 2mg of Prednisone that first day and the aches have subsided. But in the evenings, I’m seeing the streaks of light still.

Has anybody here, with GCA. Had the flashes of light experience, and/or is it a symptom of GCA?

Thanks in advance.

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@stonewheel
Sorry to hear that you are having this symptom. Visual symptoms in the setting of GCA are always worrisome and a strong indication for you to immediately contact your doctor. Like, right away today. That being said, the light streaks you are seeing may not be related to GCA . Could be what the ophthalmologists call a “flasher.” Sometimes these are caused by retinal detachment, which also requires urgent evaluation by an ophthalmologist. Good luck with this and please contact your doctors today.

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