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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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HugInterested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.
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@alandy233 https://connect.mayoclinic.org/group/polymyalgia-rheumatica-pmr/
Although it's a PMR support group, there's lots of discussions on GCA.
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2 ReactionsHi 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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3 ReactionsAre you going to be able to sleep is you take 30 mg in the afternoon? I have a terrible time sleeping on prednisone starting at about 10 mg.
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3 Reactions2 questions both re medications:
Prednisone every day for how long???
***** [[ I read the following, this part is not me, you may wish to look it up to see if it helps you: thenazareneshul | @thenazareneshul | Sep 6, 2024 It was my Opthamologist who made me get off of Prednisone. It was literally blinding me. She saved my sight by doing all the tests (field of vision testing) that proved her right. Prednisone can cause glaucoma, which is very insidious as there often are no symptoms before your eyes get harmed. ]] ******
[[ my story about My brother he took Prednisone every day long term and it gave him a heart attack and his kidneys shut down, he passed away, he never bothered to change his doctor. ]]
MY STORY: My RA DR ONLY ALLOWS ME TO TAKE PREDNISONE VERY SHORT TERM IF ABSOLUTELY NECESSARY. I take methotrexate with my "hydro" for my RA.
I am taking Hydroxychloroquine [Brand and Other Names:Plaquenil, Sovuna] 200mg Tablets 2x a day? I know that causes a problem with your eyes because I am required to have my Ophthalmologist Not optomotrist check my eyes for damage 1x per year without fail. My ophthalmologist sends a report to my RA Dr and if I don't get MY yearly exam done my RA dr calls me and says get to your eye dr!!
*** I DID RESEARCH FOR MYSELF AND MAYBE SOME OF THE FOLLOWING INFO I FOUND MIGHT HELP SOMEONE ELSE .
Hydroxychloroquine retinopathy can be diagnosed through regular eye exams that include tests like optical coherence tomography (OCT), visual field testing, and fundus autofluorescence. There is no specific treatment for the damage caused, so early detection is crucial, and the best approach is to stop the medication if toxicity is found.
Eye Problems Associated with Hydroxychloroquine
Hydroxychloroquine can lead to several serious eye issues, primarily affecting the retina and cornea.
Retinal Toxicity
Symptoms: Early stages may show no symptoms. As toxicity progresses, patients may experience painless blurring of central vision, color vision changes, and blind spots.
Risk Factors: Higher daily doses (over 6.5 mg/kg), long-term use (more than 5 years), existing retinal disease, kidney or liver problems, and age over 60 increase the risk of retinal damage.
Prevalence: About 7.5% of patients develop retinal issues, which can rise to 20% after 20 years of treatment.
Detection: Regular eye exams are crucial. A baseline exam is recommended within the first few months of starting treatment, with follow-ups annually after five years if no other risks are present.
Corneal Effects
Keratopathy: Hydroxychloroquine can cause corneal verticillata, characterized by whorl-like deposits in the cornea. This condition is usually reversible upon stopping the medication and does not relate to dosage.
Monitoring and Management
Screening: Early detection through eye exams is essential, as damage can be irreversible if not caught early. If retinal damage is detected, discontinuing hydroxychloroquine is advised, and 1alternative medications may be considered.
Maintaining the recommended dosage and regular eye check-ups can help mitigate these risks.
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4 Reactions@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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1 Reaction@alandy233 Your vision problems are strange. I just googled your problems, and here is the AI answer, for what it is worth:
"Why would someone with GCA have vision problems after breakfast?
Someone with Giant Cell Arteritis (GCA) may experience vision problems after breakfast primarily due to jaw claudication, a common symptom where the muscles used for chewing become fatigued and painful due to reduced blood flow. In GCA, inflammation causes narrowing of the blood vessels, including those that supply the jaw and the eye, meaning the act of chewing can trigger ischemia (lack of blood flow) that extends to the optic nerve.
Key reasons for post-breakfast vision problems in GCA patients include:
Jaw Claudication-Induced Ischemia: The exertion of chewing breakfast can cause severe pain in the jaw, tongue, or throat. Because GCA affects arteries in the head, this same restriction in blood flow can cause temporary (transient) vision loss or blurring during or immediately after eating.
Amaurosis Fugax (Transient Vision Loss): Many GCA patients experience "amaurosis fugax"—a temporary, painless loss of vision in one eye, often described as a curtain coming down—before permanent, irreversible vision loss occurs. Chewing breakfast can be a specific trigger for these transient episodes due to the increased metabolic demand for blood in the facial muscles.
Reduced Blood Supply to the Eye: GCA leads to inflammatory narrowing of the ophthalmic artery or its branches, such as the posterior ciliary arteries. If these arteries are already compromised, the demand for blood flow during digestion or the physical act of chewing can cause a temporary drop in blood supply to the eye, resulting in blurry or double vision. "
So maybe there is a lack of blood flow to your eyes caused by these reasons.
You could try splitting your prednisone dose, but I wouldn't do an even split. It is more normal to do 75% - 25%. You could try 50 mg -10 mg or 45 mg - 15 mg.
Also, do you have access to a different doctor? It sounds like you need much better medical advice.
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4 ReactionsCheck 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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3 Reactions@bswpb Thanks for your response. As far as sleeping I am not sure. All I can do is try and adjust if necessary. Another member here, @jeff97 posted some incredibly useful information that is directly related to my situation. I will share it with my Dr. and hopefully we can come up with a plan to help me. I will follow-up here with additional information as I get it. Thanks again.
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2 Reactions@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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3 Reactions@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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