Sjögren’s Syndrome

Sjögren’s syndrome refers to inflammation that can lead to dry eyes, dry mouth, and dry skin. It can also lead to inflammation of the joints, lungs, kidneys, blood vessels, nerves, and muscles. Very rarely it may lead to lymphoma (a type of lymph node cancer).

Although certain hereditary and environmental factors may increase an individual’s risk of developing Sjögren’s, the exact cause of this disease is unknown. Sjögren’s syndrome is not an infectious illness. In other words, one cannot “catch” it from another individual.

Sjögren’s syndrome affects more than 1 million adults in the United States. It occurs nine times more frequently in women than in men and rarely develops before 20 years of age. To diagnose Sjögren’s syndrome, a physician obtains a medical history, performs a physical examination, and orders laboratory tests. Laboratory tests may include an erythrocyte sedimentation rate (ESR), which measures inflammation in the body, a complete blood cell count (CBC), and Sjögren’s syndrome antibodies called SS-A and SS-B. The SS-A and SS-B tests are positive in only 50% of individuals with Sjögren’s. A doctor may perform a “Schirmer’s test” to determine the amount of tears in the eyes and/or a lip biopsy to confirm the diagnosis of Sjögren’s.

Living With Your Diagnosis

One of the first signs of Sjögren’s syndrome is dry eyes and dry mouth. The amount of dryness varies by individual. Dry eyes may cause a sandy feeling under your eyelids, burning of the eyes, increased sensitivity to light, decreased tearing, and in severe cases, ulcers of the eye. A dry mouth may cause difficulty chewing and swallowing dry foods, and an increased susceptibility to tooth decay, gingivitis (gum disease), and infections of the mouth. Women may have vaginal dryness that can cause pain with intercourse and can increase susceptibility to vaginal yeast infections. The nose may also become dry and lead to inflammation of the sinuses. If there is joint pain, it may be difficult to do some daily activities. There is no cure for Sjögren’s. However, with improved medications and comprehensive treatment, individuals with Sjögren’s can lead a full life.

Treatment

The best way to manage Sjögren’s syndrome is through a combination of medications and therapies. Over-the-counter moisturizing products for dry eyes, dry mouth, and dry vagina may be very helpful. Nonsteroidal anti-inflammatory drugs (NSAIDs) may help decrease joint pain and swelling. Potential side effects of NSAIDs include stomach upset, ulcers, diarrhea, constipation, headache, dizziness, difficulty hearing, and a rash. Sometimes an ophthalmologist will suggest “plugging” the tear ducts to increase the amount of tears in the eyes. If the joint pain becomes severe, a physician may prescribe hydroxychloroquine. Potential side effects of this drug include nausea, diarrhea, and rash, and rarely it may affect the eyes. Prednisone or methotrexate may be used if the lungs, kidneys, and blood vessels are affected. Prednisone may cause skin bruising, high blood sugar, increased blood pressure, difficulty sleeping, weight gain, and thinning of the bones. Methotrexate may affect the blood and liver and may cause a rash.

The DOs

• Take your medication as prescribed.
• Call your doctor if you are experiencing side effects from medications.
• Use a cream or ointment for dry skin because these help “seal in” moisture.
• See a dentist regularly and brush and floss the teeth at least twice a day.
• Use a humidifier at night to prevent dryness of the eyes, mouth, and nose.
• Ask your doctor what over-the-counter products are available to decrease dryness. If an artificial tear preparation burns the eyes, switch to another product or to one without a preservative. If the eyes dry out at night, an eye ointment may be more beneficial. Vaginal lubricants used throughout the day or before intercourse can be helpful.

The DON’Ts

• Wait to see whether a medication’s side effect will go away. Always call your doctor if you have any questions.
• Give up. If a medication or product doesn’t help, discuss this with your physician until you find medicine or product that does.
• Eat a diet of sugary, sticky foods. This may accelerate dental cavities and gingivitis.

When to Call Your Doctor

• You have any side effects listed above from any of the medications or products.
• The medications or products are not helping.
• You need a referral to an ophthalmologist and/or dentist.

For More Information
Contact the Arthritis Foundation in your area. If you do not know the location of the Arthritis Foundation, you may call the national office at 1-800-283-7800 or access the information on the Internet at www.arthritis.org. The Sjögren’s Syndrome Foundation may be reached at 1-800-475-6436.

Derived from Patient Teaching Guide, © Mosby, Inc. All Rights Reserved

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