1. < Polymyalgia Rheumatica (PMR)
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Trying To get Answers About GCA

Posted by alandy233 @alandy233, Jan 12 3:36pm

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.

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

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alandy233 | @alandy233 | Feb 15 6:28pm
In reply to @seniormed "Check your blood pressure when your vision diminishes it could be high or low even on..." + (show)
Profile picture for seniormed @seniormed

Check your blood pressure when
your vision diminishes it could be high or low even on prednisone.
Have you had a carotid ultrasound?

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@seniormed Thanks for your response. Yes, I am checking my blood pressure and I am also checking my blood glucose and logging both.

Yes, I have had a Carotid Ultrasound and it came back as normal. Thanks again.

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jeff97 | @jeff97 | Feb 15 7:01pm
In reply to @alandy233 "@jeff97 Thank you so much. Once again, your information is spot on and you have hit..." + (show)
Profile picture for alandy233 @alandy233

@jeff97 Thank you so much. Once again, your information is spot on and you have hit an out of the park Home Run. It is like you are beside me living my life with me such as it is. Information of this sort is what I need to deal with this and I am excited for the first time in a while.
As far as the Prednisone I will take your suggestion and do 75% - 25%. Thank you.

With regards to me getting a different Dr. I am working on that so at least that is moving in a proper direction.

Thank you again.

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@alandy233 Thanks. I'm glad the information I provided was helpful. I understand your situation because I went through some of the same issues with GCA. My vision problems weren't as serious as yours, but I had some episodes where my vision was temporarily impaired because of reduced blood flow to my eyes. I have a lot of sympathy for anyone who has to deal with significant problems from GCA.

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Mort Hurt | @dyas | Feb 16 9:14am
In reply to @alandy233 "Hi Everyone, it has been a while since I have checked in and I am still..." + (show)
Profile picture for alandy233 @alandy233

Hi Everyone, it has been a while since I have checked in and I am still trying to take things one day at a time and trying to get answers to this puzzle that is GCA. I have been able to get some answers and a few pieces of the puzzle but there is much I still do not know but I will keep looking.

Sadly, I am getting ready to fire my Ophthalmologist and start a multi-million dollar lawsuit against him for Malpractice. I believe and have believed that he is way out of his depth with my case and yet he won't admit it or ask for help. It seems that I am the only one who is brainstorming and contributing ideas to this situation.

I will also be initiating a multi-million dollar Malpractice lawsuit against the Rheumatologist that I am supposed to see in another three months (A total of 9 months I have been made to wait despite a diagnosis of imminent blindness). I may go blind due to their mistakes , stupidity, and lack of actions but I will live well doing it.

As I said above I am still trying to get answers and I am hoping some of the support group members may want to share their experiences so we all can learn. I have been having good and bad days for my vision and sadly mostly bad days. One thing I am having trouble figuring out is why does my vision always tank just after I eat my breakfast? I get up at 6:00AM clean up, and take my Dog for a walk around 7:30AM. This morning was nice with soft diffused sunlight and low cloud cover; easy on my vision.

We finished up our walk and I got my breakfast cereal, toast, and coffee. Within 15 minutes of my sitting down to eat my breakfast my vision absolutely tanked. My Field of View got really dark and the blur, double vision, haze, and "window shade effect" fully kicked in. I have no clarity or contrast in my vision and my vision was totally flat, no depth of field at all. This happens typically 6 days out of 7 and it is really pissing me off. I am on 60Mg of Prednisone/day which I take just after I finish my breakfast and I am wondering if I need to start taking it before I eat or do I need to split it up half in the morning and half in the afternoon or is there another option I am not aware of? Thoughts are appreciated.

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I have an issue totally unrelated to Prednisone and eyes. I just want to say this forum provided by Mayo is outstanding. It’s the reason I’ve followed the Mayo Clinic for years.

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squirrellunch | @squirrellunch | Feb 16 10:44pm
In reply to @alandy233 "@squirrellunch Thank you for sharing. This is good information and what I need. Definitely a piece..." + (show)
Profile picture for alandy233 @alandy233

@squirrellunch Thank you for sharing. This is good information and what I need. Definitely a piece of the puzzle and i will help immensely. Thank you again.

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@alandy233 I'm glad I helped. I hope things go better for you. I understand many problems so I am here for help too. I have RA, Osteoarthritis, Osteoporosis, chronic pain, fibromyalgia, edema (Leaky valves) in my legs, DVTs due to V LEIDEN blood clotting, etc. Thank you for sending me your message.

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squirrellunch | @squirrellunch | Feb 16 10:53pm
In reply to @colleenyoung "@squirrellunch, thank you for your information. It looks like you may have used an AI tool..." + (show)
Profile picture for Colleen Young, Connect Director @colleenyoung

@squirrellunch, thank you for your information. It looks like you may have used an AI tool to do your research. Did you use a tool like ChatGPT, Copilot or similar to find this information?

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@colleenyoung I do a lot of research using Google Chrome with duck-duck-go search engine. Then you have to go a bunch of pages down the search results because the 1st ones are not the best, they paid for search engines to list them early in the results. Then I look for what I think are real places to help -I.E. NOT WIKIPEDIA. Then I copy to MS Word what I think may help me and then save my info in word or pdf format. I search, copy, paste because the RA has done a # on my hands, and fingers.

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