Trying To get Answers About GCA

I was diagnosed with GCA in March 2025 and it has been a roller coaster ride and not a good one. My vision has been compromised and badly. I have only 10% of my vision left in my right eye and 50% of my vision left in my left eye. For the past eight months I have been trying to get answers and understand what is going on and I keep coming up with nothing and it is very frustrating.

I am working with my PCP as well as an Ophthalmologist and a Neuro-Ophthalmologist. I have an appointment with a Rheumatologist in March. All of the tests are coming back normal and within limits. In Sept 2025 I was in the hospital for three days and had three rounds of high dose Prednisone IV. I am currently on 20Mg per day Prednisone tablets and Memantine 10Mg per day. In November the GCA appeared to go into remission for two months but has now come back extremely aggressively. My Ophthalmologist is switching me to an aggressive medication protocol. 60Mg per day Prednisone tapering to 30Mg per day. Also, 15Mg of Methotrexate once a week for six weeks and 1Mg of Folic Acid for 36 days.

Honestly the Methotrexate concerns me. The side effects are potentially bad and very bad. My Doctor has told me that the vision I have lost will never recover which is bad. I am unclear as to what he hopes to accomplish with this new course of medications and he is not telling me. Is he trying to slow it or is he trying to halt it? Will I go completely blind or will I have some sight left? What is happening? I have read here that only 10% of people who lose their vision to GCA go completely blind and I am wondering if I am part of that 10%? When the GCA went into remission for those two months the Doctors thought they had halted it and it came back more aggressive than before. The darkness, blur, haze, and tunnel vision are horrible but I am somehow managing. I wonder every day if I will ever be rid of this nightmare.

I am trying to understand this and make sense of it but no one is telling me anything and there doesn't seem to be much useable information out there which is even more frustrating. This is a medical support group so why aren't people sharing their stories and contributing information. If someone reads this and wants to share or help me understand what is going on please feel free because right now I know absolutely nothing.