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Giant Cell Arteritis Diagnosis
Polymyalgia Rheumatica (PMR) | Last Active: Aug 3 6:19pm | Replies (98)Comment receiving replies
I was diagnosed with GCA in October 2024. I woke up one morning and my vision was blotchy and patchy with grey areas. Went to see Retinol Specialist and he knew immediately from symptoms I had been having. Very painful in jaw area and headaches. He started me on 80 mg prednisone per day and sent me to a Neuro Opthamologist. After couple of months she dropped me to 60, then 40 and I am now down to 3 mg for 1 week, 2 mg for next week, then 1 and then every other day for a week. About 1 1/2 weeks after going down, I would get. extremely tired. I also do better in after noon. All blood work has always come back normal. When they did biopsy, they did remove an occlusion. Has anyone had a recurrence and had to get back on prednisone? I hope I never have to get back on prednisone. Awful.!!!! Good luck to all of you. So thankful for this group.
Replies to "I was diagnosed with GCA in October 2024. I woke up one morning and my vision..."
Hello! What you woke up to that morning is exactly what happened to me this past April, only it was in just one eye. You described it perfectly!! Was that in both eyes for you? And what is your vision like now? I hope your vision is back to normal. I was immediately put on steroid infusions every 24 hours for 4 days and have been on prednisone ever since. I also do Actemra infusions every 4 weeks. My vision in that eye has gotten better, but there are still grey blotchy areas. And yes, my prednisone tapering has definitely caused fatigue. Thank you for everything you wrote! And I am so thankful for this group as well!
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jeanrod825
My first round with Giant Cell Arteritis (GCA) lasted from 2018 to 2021. After a period of remission, I experienced a flare following COVID in early 2024. I restarted prednisone in September 2024 at 20 mg, but tapered quickly. Unfortunately, I couldn’t get below 10 mg without triggering another flare.
In March 2025, I began monthly Actemra infusions alongside a typical U.S.-style prednisone taper. That taper flared again at 7.5 mg, forcing me back up to 15 mg. Then that taper flared again at 7.5 mg, forcing me back up to 15 mg. I’m currently down to 10 mg and hoping my rheumatologist will support a slower, UK-style taper below 10 mg.
It’s been four months since starting Actemra, and I’m optimistic that it’s finally beginning to take effect. I’ve made it clear to my rheumatologist that, at age 83, if I can reach 5 mg of prednisone while continuing Actemra, I don’t want to risk stopping either medication and facing another flare.