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,

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

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 | 1 day 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 | 1 day 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 | 1 day 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 | 1 day ago

Have you seen your Dr as of yet?

kobellava | @kobellava | 1 day 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.

kobellava | @kobellava | 1 day ago

I want to add if you have eye issues again go to the emergency room.

sandiw77 | @sandiw77 | 1 day ago

In reply to @tweet "@sandiw77 Hi, Hope you are well. I don’t see it. I’m still waiting for my Actemra..." + (show)

Hi @tweet, if you get emails from Mayo Clinic it really should have been in your email box just like these. Maybe check you spam box??

I am doing okay, but my pain level has been intense lately. I will have have a conversation with my rheumatologist. Pray we are headed to remission! ❤️

stonewheel | @stonewheel | 7 hours ago

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.