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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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ropnrose | @ropnrose | 16 hours ago

I have high cholesterol. Not horrible, but higher than the standard. With all my other issues (inflammatory arthritis and osteoarthritis), I feel that it's the least of my problems.

Let us know how your stress test works out.

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villager | @villager | 7 hours ago
In reply to @ropnrose "@tweet When I was on a high dose of Prednisone (50 mg.) I had chest pains...." + (show)
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@tweet When I was on a high dose of Prednisone (50 mg.) I had chest pains. It felt like an elephant sitting on my chest. I had an echocardiogram and it showed that everything was normal with my heart. The chest pains were one of many side effects I had from the Prednisone. They eventually went away, as I tapered my dose down.

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@ropnrose I had the same experience. I am a cardiac patient having had a heart attack over 20 years ago and bypass surgery 4 years ago. I know chest symptoms. Hospital ED cleared me for any heart problems. I know it was the prednisone.

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