Sjogren’s syndrome: have you seen the eye doc yet?
When I wrote my first RA Warrior post on Sjogren’s syndrome in 2009, I wasn’t sure whether I’d ever be diagnosed with it. But I thought it was important to cover on the blog. I had a fun idea for illustrating the pronunciation of the name so my daughter Mary Khris created the “show grins” original character for us.
Reading research articles for that post, I learned that about half of Sjogren’s syndrome patients are Rheumatoid Disease patients, having “Secondary Sjogren’s.” I say was because new Sjogren’s guidelines seem to change that. The new Sjogren’s syndrome criteria may eliminate that distinction between Primary and Secondary Sjogren’s.
I’m not sure yet how that matters. What always matters to me is that people can get proper treatment. Which brings me back to my own Sjogren’s diagnosis.
My first rheumatologist, Dr. KBC, asked me at every appointment whether I’d seen the eye doc yet. I would ask why and be told it’s just a good idea with RA. I didn’t want any more doctors because RA was consuming a large portion of my life and my schedule already.
Eventually, I went to the eye doc. But he was one of the “you-don’t-look-sick-why-are-you-bothering-me” (YDLSWAUBM) docs. We paid the bills, but he acted like he was doing the rheum doc a big favor to see me. He mumbled something about my eyes being dry and learning to deal with eye drops… but told me to come back if it I have vision trouble.
I left there determined to never go back. I told Dr. KBC to check that off my list and went back to focusing on overcoming RA to do as much as I could.
Persistent Sjogren’s syndrome won’t be ignored
But my eyes didn’t care if I was busy or in pain or tired of doctors. My eyes got drier and I ignored them more. Eventually, I was squinting all the time and wearing sunglasses, even indoors in the evening. Light was painful.
Aware of how common Sjogren’s is with RA. Aware of its symptoms. I still had no clue what was wrong with me.
I ended up doing exactly what I’d warned about in that blog post: Bigger problems allowed me to easily ignore eye symptoms such as itchiness, grittiness, and sensitivity to light. How do I know if my eyes are dry; I’ve bigger fish to fry?
When I could no longer see well enough to read or drive, I had to stop ignoring my eyes. It had been about two years since I’d seen the YDLSWAUBM doc. The office is across the street from my pediatricians so I walked in one day and asked for an appointment with someone else. The women at the desk laughed, “We understand.”
Soon I saw Dr. U who was everything patients want in a doctor. My eyes were carefully examined and my condition was discussed intelligently. The surface of the eyes was wrinkled from extended periods of dryness, causing the glare whenever light hit the surface of my eye. We explored management and long-term treatments, from Omega-3 supplements to Restasis. And he gave me prescriptions for glasses and sample eye drops.
Over several visits, Dr. U wrote “symptoms consistent with Sjogren’s” on my chart, even sending notes to my other doctors because he was unsure whose job it was to actually diagnose me. Meanwhile I admitted to myself that my difficulty swallowing food was probably related to my dry peeling lips.
My Sjogren’s story has more chapters. Dr. U retired. We see Dr. P now. I have permanent plugs in my tear ducts. They are not as comfortable as the temporary ones were, which Dr. P pointed out after they were inserted. I might have chosen differently and I’m not sure how long I can put up with the sore right eye. It may depend on how successfully my RA pain distracts me.
Do you have Sjogren’s syndrome symptoms? If you’ve been diagnosed, how were you diagnosed? If you also have RA, do you receive any additional treatment for the Sjogren’s?
For more on Sjogren’s and its new diagnosis criteria, read this recent post.
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