John, thanks for the ophthalmology input. I posted asking about VKH disease some time ago but no one else seemed to have it. Will look into AZ Mayo.
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Hi, Bluebell! It's certainly a rare disease! The cataracts aren't ripe yet (love that ironic term), but I'm feeling the VKH effects on my reading. Very frightening and annoying as well. (I'm a retired English lit prof, so trouble reading is something I'm impatient with.) I'm on my way out of town for a bit, but would very much like to PM you when I return. Thanks! c.
One of the troubling aspects of treatment is the vulnerability to other infections. I began a course of prenisolone; that was replaced by methotrexate. I had to stop the latter (with the specialist's agreement) when an extended bout of the flu lasting two months ended in severe bronchitis. Now I have resumed the methotrexate, as my vision gets blurrier. I also have cataracts in both eyes, so blurriness may come from them as well as VKH. One day at a time.
Would appreciate hearing from others fighting this disease.