I have GCA. I have a new rheumatologist who practices at University Hospital in a clinic designed for patients with vasculitis and certain auto immune diseases (GCA being one of them), who has told me that I need to not worry about losing eye sight during the course of tapering prednisone or a flare. She said that once the initial GCA was brought under control with the high doses of steroids losing eye sight is not a concern. Now I am confused.
Peggy
She said that once the initial GCA was brought under control with the high doses of steroids losing eye sight is not a concern
That’s okay in theory…..especially if you aren’t personally involved. But I wouldn’t want to test it, it should always a concern [although not a paranoia]…
… and bringing the GCA under control is perhaps the easiest part, keeping it under control as you reduce may be more difficult.
Thank you. I guess that is my question that I will email her. Why is it so important to keep GCA under control if vision loss is not a concern.
Because visual loss is only the most feared effect. But GCA in the other arteries can lead to stroke, heart attack and longer term to peripheral arterial disease.
Because uncontrolled inflammation can cause problems in others arteries….
Theoretically maybe - but it would be a brave person who tested it to the ultimate!!! And not sure the evidence agrees with her.
ncbi.nlm.nih.gov/pmc/articl...
reports a lady who lost vision 3 weeks after starting pred. We know that once visual loss has occured in one eye, the possibility of loss in the other eye is about 50/50. If the ored is started at a point where irreversible damage has occurred it is too late, as it was for this lady.
In terms of during tapering, this article reports cases were loss of vision occurred after months of pred treatment:
arthritis-research.biomedce....
says
"Regarding GC, most studies showed a higher percentage of vision loss during treatment. One recent case-control study with 104 GCA-patients showed new ischemic events (AION) in 4% after initiation of treatment with GC [20]. An abstract of the ACR 2019 presented a cohort of 11,820 veterans in the USA with ophthalmologic complications of 6.2% within 1 year after diagnosis despite prednisone exposure [21]. The lowest rate of vision loss under treatment with corticosteroids was reported in a cohort of 136 biopsy-proven GCA with one vision loss (0.7%) 14 months after start of treatment at a dose of 12.5 mg/d prednisolone [10]. One retrospective study found a percentage of 10% of patients with recurrent AION in the same eye during treatment with GC (3–60 mg/d at 3–36 months of treatment) [22]. "
Which - frankly - says to me that it isn't common but it can and has happened, NEVER say never ...
Thank you for your information. I’m so frustrated and confused by rheumatologists at this point. My trust in one has led me to having to have part of my colon removed and search for a new rheumatologist and the new who supposedly understands GCA tells me not to worry about sight loss at this point. I’m just so tired of trying to figure this out.
I really appreciate your help.
Peggy
I have heard a lot of patients report being told that being on pred at any dose for PMR protects you from developing GCA - also patently untrue as we have patients on the forum whose PMR turned to GCA as they tapered.
Doctors claim to be scientists - only bad scientists claim "never" ...
Yes, like me. PMR for just over a year, started on 10 mg. pred., tapered up and down with flares, GCA symptoms started 2 weeks ago when I was on 8 mg. Now on 60.
Just stay alert for any visual symptoms, unusual headaches, jaw claudication, tongue pain, when you taper. I would be inclined to seek the help of an emergency opthalmologist if you feel that you won’t be treated with knowledge and understanding by this Rheumatologist. I have a thorough eye examination with my well equipped ( state of the art) optician every 6 months. I have GCA/LVV ( non cranial so far) but I don’t want to take risks however small. My optician has kept slides of inside my eye since 2017 and no, we are not paranoid.
Thank you. I had an amazing neuro opthamologist who did my biopsy and initial care for GCA. Even after I had a rheumatologist she followed me closely and I trusted her completely. She left the university medical center a year ago and I really miss her.
Peggy
What a loss! What about her replacement?
No replacement. I think they feel since I am being followed closely by a Duke eye specialist for glaucoma that I’m covered.
Sight and GCA
GCA Misdiagnosed Blind In One Eye
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GCA flare, a lesson learnt 
