My Experience with Uveitis
Since axial spondyloarthritis is a systemic disease, it has the potential to affect the entire body, including the eyes. I was diagnosed with uveitis shortly after I received my AS diagnosis. Uveitis is inflammation of the part of the eye called the uvea, or the middle layer of the eye which includes the iris, choroid, and ciliary body.
Uveitis is linked to spondyloarthritis. In fact, uveitis is estimated to occur in up to 40% of people with spondyloarthritis1. Though uveitis flares are typically acute, they’re serious and should not be left untreated.
Getting diagnosed with uveitis
My uveitis is managed well now, but it was not when I was first diagnosed nearly five years ago. Though I don’t remember having issues with my eyes previously, my rheumatologist recommended I visit an ophthalmologist anyway. So, I scheduled an appointment.
Then out of some strange occurrence of synchronicity, I began to experience eye pain (or at least that’s how I remember it). It’s almost as if making the appointment willed the uveitis to appear. Of course that’s not the case.
At that moment in 2016, I was at the beginning stages of trying to control my AS, my stress levels were through the roof, and so were the inflammation levels in my body. Besides, if I had the power to manifest something, it certainly wouldn’t be uveitis.
Sure enough, the day I visited the eye doctor I had moderate eye pain. The ophthalmologist asked me why I was visiting, if I was HLA-B27 positive (which I am), and if inflammatory diseases run in my family (they do--Crohns and Colitis). He quickly spotted the inflammation and diagnosed me with uveitis, but then proceeded to talk about his background studying genetics and uveitis.
That conversation was so interesting that I still remember it clear as day. He said that he had spent a decade in Europe establishing the link between uveitis and the Ashkenazi Jewish population. He asked if I had any Ashkenazi Jewish ancestry, and I said not to my knowledge, but the truth is I just didn’t know. I still don’t.
What a uveitis flare feels like for me
My most severe uveitis flare put me out-of-commission for 24 hours. I woke up with a mean headache around my eyes, and as soon as I walked out into the living room (where the curtains were wide open, letting in all the light of day) I experienced severe piercing pain in both eyes, but especially my right eye.
The pain brought on by light sensitivity forced me to shut my eyes right away. I fled back into the bedroom, secured the black-out curtains to prevent even one ray of light from sneaking in, squeezed a drop of corticosteroid drops into both of my eyes, and crawled back into bed. I asked my wife to place a damp face cloth in the freezer for ten minutes, then draped that cool cloth over my eyes to numb away some of the pain.
Luckily, the corticosteroid drops start acting relatively quickly. Within several hours, my pain decreased and by the next day my eyes were no longer sensitive to light.
The treatment and outlook
I’ve had maybe a half-dozen incidents of uveitis since 2016, and the episodes are becoming more and more rare. I don’t know what triggers a uveitis episode, but I do know that my biologic helps control the uveitis as well as the AS.
I visit an ophthalmologist annually for monitoring. In the past three years, no ophthalmologist has noticed inflammation in my eyes. I take that as a positive sign. Every year, I renew my prescription corticosteroid drops and carry them with me, just in case.
It’s not easy for me to identify my eye pain as uveitis, since I don’t experience eye redness. When I begin to feel eye pain, I start with regular eye drops to rule out dry-eye. If the pain is accompanied by light sensitivity, and if the pain doesn’t ease up with regular eye drops, I then use my steroid drops. I am grateful that the steroid eye drops have worked every time!
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Can you tell when a flare is coming?