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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tweet | @tweet | Aug 7 5:47pm

In reply to @sandiw77 "@tweet, I sent you a private message!" + (show)

@sandiw77

Where’s that at? Hope you are doing well!!

sandiw77 | @sandiw77 | Aug 7 9:38pm

In reply to @tweet "@sandiw77 Where’s that at? Hope you are doing well!!" + (show)

@tweet, it should show up in your email.

tweet | @tweet | 8 hours ago

In reply to @sandiw77 "@tweet, it should show up in your email." + (show)

@sandiw77 Hi,

Hope you are well. I don’t see it. I’m still waiting for my Actemra to be approved. Meanwhile I’m still taking Rinvoq. How you feeling? ❤️

clendenin | @clendenin | 6 hours ago

In reply to @kobellava "@tryingtogetbacktome I will only use Prednisone. I had a couple of flares because doctors tried to..." + (show)

@kobellava to clarify, you had a reaction to Actemrya?

kobellava | @kobellava | 2 hours ago

In reply to @clendenin "@kobellava to clarify, you had a reaction to Actemrya?" + (show)

@clendenin Yes, breathing issues after one injection. Went to emergency room. It works for some people but it's not for everyone.

tweet | @tweet | 2 hours ago

Have you seen your Dr as of yet?

kobellava | @kobellava | 2 hours ago

Sounds like you're having a flare. I went to 20 mgs when I had one. Eye issues are always a concern and you should tell your doctor. Prednisone is just masking the pain, it's not curing anything. Yes you can go blind while on lower doses of prednisone. Low-dose steroids (such as 5 mg to 10 mg daily) are generally inadequate to control active GCA inflammation and prevent ischemic damage to the optic nerve. Please call your doctor. Wishing you well.