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DiscussionWho has GCA, Giant Cell Arteritis?
Autoimmune Diseases | Last Active: Jun 9 4:47pm | Replies (56)Comment receiving replies
Replies to "Hello @elizabeth22 , Just wanted to share with you my experience with GCA. I hope the..."
@eaod
Hi. What a journey! I do hope the Rinvoq is effective so you can get off the prednisone. I also had the classic puffy face from the prednisone when I was in high doses. It does go away. I still get headaches but I think it’s because I don’t hydrate enough. It’s good you’re seeing the ophthalmologist on a regular basis to make sure your blurry vision is a result of the prednisone and not due to the temporal arteritis.
All the best to you.
@eaod
Thanks for sharing all this. Friday is my first follow up with my new Rheumatologist at Mayo since I got out of the hospital. He had me tapering like you did, every 2 weeks, 10 mg. Friday I go down to 30mg. I’m a little anxious about it due to I’m having more headaches again already. But keeping that journal of symptoms to talk about with the Dr.
And as I said in earlier post, maybe the Actmera will be the answer to getting me way down on Prednisone.
My family has a wicked sense of humor & are sending me memes of fat face babies & animals to poke fun at my “moon face”!
Gotta find something to laugh at, or else we can just cry sometimes!
I really appreciate all the wisdom. It does help me remember this process of healing will take time & I will be on this journey with my new unwelcome “passenger” called GCA for along time; the rest of my life. Got to accept I have to learn to live with it & be patient, take one day at a time. For today I am grateful. It always could be so much worse.
@eaod
I drink a lot of water instead of eating, it helps keep the weight down. Also take Nutranize to help balance (?) the vitamins that Prednisone depletes. Has been helpful so far. No guarantee this will help you.
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@eaod
I too was started @60 mg prednisone. Then methotrexate was added and titrated down to 10 mg over 6 weeks. Started monthly IV Actrema. Rheum stopped methotrexate 2 weeks ago and lowered prednisone to 7.5 mg. Headache and jaw pain returned. Back to 15 mg prednisone which has helped. Not sure where going from here.