@nativeoregirl I have a great deal of compassion for what you are experiencing. My feeling is that you have a very healthy approach to this.
Having lost the sight in one eye from a misdiagnosis for nine months, I could never truly understand folks obsessed with getting to zero prednisone when it comes to dealing with GCA. Only after I lost the sight, did they do a biopsy...and then I wasn't put on prednisone for a few days...no pulse treatment. You are wise to be vigilant, I am. I've been on Pred and Actemra for three years and now take just 3mg plus my weekly injection.
I don't know if they ever have to do more than one biopsy. It took me lots of time to get to this low a dose, and I would go up and down and finally got to single digits in 2023. I feel good now and to me it seems like I see almost everything...I paint watercolors.
Certainly, I'm not trying to frighten you...I'm complimenting you. Personally, if I had to continue or increase my prednisone, that would be fine. Like you, for me, it is about being aware, having a very good rheumatologist, and doing all I can to see as much as I can. Take good care...💞