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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.
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Better to stay on high dose prednisone and not taper so quickly.
Know your numbers for ESR and CRP. Ask for a lab order for IL-6
level and hepatitis and TB screens which the rheumatologist would order
before Actemra. You could contact your prescription plan and see
if it covered. The manufacturer may have a program to help pay if
you qualify for assistance. I think most rheums keep the dose at 60 until
you see improvement.
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1 Reaction@seniormed On 05.29.25 my ESR was 7mm/hr. On 12.-3.25 my ESR was 2mm/hr
On 12.03.25 my ESR was 2mm/hr
On 05.29.25 my CRP was 2.52mg/L
On 12.03.25 my CRP was .07mg/L
In both instances the numbers have decreased. What does this tell me? Thanks.
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1 ReactionThis was an interesting weekend. Saturday was my first day taking the Methotrexate (15Mg Methotrexate with 60Mg Prednisone) and as I said it was interesting. I was expecting side effects like maybe muscle soreness, backache, stiff joints, nausea, diarrhea or similar and those were not that bad. Actually other than a bit of nausea I did OK by myself as far as that went.
What I did not expect and cannot wrap my head around is the huge hit that my vision has taken and is still taking. I know that Prednisone and Methotrexate both have vision loss and blurred vision as side effects but WOW this is a whole nother level! The blur and the haze have been as bad if not worse than anything I have experienced since this started and it came on within two hours of my taking the medications. I will say that for a short period of time I did experience a slight improvement in the contrast and clarity of my vision so that was something.
Sunday morning when I woke up I got a slight cause for hope. My Field of Vision (FoV) was brighter and the clarity and contrast showed a little improvement but that was short lived. Within a few hours of taking my Prednisone my vision started to slide again and now it is back at the low level(s) I have come to expect from this. I will add that for most of Saturday my area had dense, low hanging cloud cover so there was not a lot of available light and for Sunday we had rain all day and associated cloud cover making for a rough weekend.
When I woke up this morning it seemed like my vision has slipped even more. It seems like the blur, haze, and tunnel vision have continued to increase and I am wondering when will it end if ever? The blind spots have increased in size and number as well. Not I am finding I have to feel around on my counter just to find my pills and that is sad and makes me very angry that it has come to this.
Once my body adjusts to the high doses and/or once I start tapering down will my vision improve or am I just out of luck? Life is not at all kind and I am sure tired of all of it.
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1 Reaction@alandy233 Have you called an ophthalmologist to be evaluated? Your post has me so worried. Did you call your doctor when you first had vision problems?