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The Challenge of Identifying Sjogren’s Syndrome

A report Dr. Criswell published last year with Dr. Xavier Mariette in The New England Journal of Medicine listed possible manifestations of Sjogren’s in lymph nodes, lungs, kidneys, muscles, nervous system, skin and brain, as well as various glands and joints. Some patients experience constitutional symptoms like fever, involuntary weight loss or night sweats.

Since dental health requires saliva, Ms. Divinagracia was wisely advised by the rheumatologist to see her dentist, who told her to always brush after eating, floss twice a day, suck on sugar-free lozenges and drink water all day to reduce the risk of rampant dental decay and tooth loss.

For someone as active as she has been for decades, the bouts of fatigue that usually accompany Sjogren’s are especially hard to take. “I could sleep for eight hours and wake up feeling like I hadn’t slept at all,” she said. “Or sometimes the fatigue will hit in the afternoon when I’m supposed to be starting supper for the family.”

As life-disrupting as the syndrome can be, its worst possible consequence is the occurrence of B-cell lymphoma, a cancer of the immune system that afflicts 5 percent to10 percent of those with primary Sjogren’s, a risk 15 to 20 times higher than in the general population. Blood tests every year or two to check for lymphoma are recommended, especially for patients with severe disease, and swollen lymph nodes should be assessed without delay.

Ideally, patients are best managed by a medical team. Dr. R. Hal Scofield, a Sjogren’s specialist at Oklahoma Medical Research Foundation, where patients are seen by a rheumatologist, dentist and eye doctor, runs one of the few multidisciplinary clinics in the country.

Ms. Divinagracia, who knows coordinated treatment can help to minimize symptoms and slow progression, said she’d have to travel from Los Angeles to San Francisco to get to a Sjogren’s clinic. However, she has taken a proactive approach to learn about the disease, reduce expenses and limit distressing side effects of treatment. She also joined a Sjogren’s support group through the Sjogren’s Syndrome Foundation.

“My list of medications is a mile long, and most have to be taken several times a day,” she said. One of the drugs prescribed, Restasis, is so expensive she got a prescription for a generic form available in Canada but not in the United States.

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