What happens to my GCA?

@graydude that is one of those questions that probably goes unanswered or with a lot unknowns or maybes. I'm hoping others with GCA and Rinvoq experience will be able to share their experience with you. I'm just happy I've only had 2 occurrences of PMR and never had to deal with GCA although my rheumatologist and PCP were always looking for the GCA symptoms to show up. The Rheumatology Advisor site has a good reference article on Rinvoq for the treatment of GCA that may provide some answers for you while you wait for others to respond - https://www.rheumatologyadvisor.com/cch/rinvoq-for-the-treatment-of-giant-cell-arteritis/.

I was diagnosed with GCA in April of 2025. Started taking high doses of prednisone to address the inflammation. In June I began taking 15 mg of Rinvoq as I continued with my prednisone taper. I discontinued prednisone in January of this year and am still taking Rinvoq which my rheumatologist would like me to continue through June of next year. I’ve been in remission for almost a year and have not experienced a relapse.

In 1990, my 74 year old father woke up one morning and could not see. He was taken to the hospital where they suspected Temporal Arteritis and put him on high dose steroids. His vision returned. A biopsy was negative for TA. For five years we visited doctors from Boston to New York looking for answers to flare ups. I told doctors he had VIM; Vascular Inflammation, Migratory. I also called it Whack-a-Mole inflammation but that didn't sound as professional. One night while I sat with him in the hospital a doctor came in and sat with me. He said, You know, we may never know what's wrong with your dad, but we know what's killing him." I said, "Steroids?" He said yes and suggested we stop searching and focus on keeping him comfortable. He lived, comfortably, another five years without a diagnosis.
In November, 2020, I went to the hospital (my PCP wasn't seeing patients) with a 2 week headache. The doctor said my sed rate was very high and she suspected Giant Cell Arteritis. I told her I'd never heard of it and she said they used to call it Temporal Arteritis. My biopsy was positive.
I never had covid or mono. I get monthly tocilizumab infusions and try to keep prednisone use to a minimum as I suspect it left me vulnerable to melanoma and cataracts.
It is my experience that GCA does not go away. Flare ups come for no apparent reason and if I have to take prednisone I do. I usually feel pretty good but I don't have much energy. We need a new word for fatigue.
Good luck to all of us and thank all of you for being here.
I give thanks for my blessings. It could be worse.