Sjogren's Syndrome: Care Instructions

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Your Care Instructions

Sjögren's syndrome (say "show-grins") causes your body's defence, or immune, system to attack the glands that make moisture. The condition affects your tear and saliva glands and sometimes other parts of your body. Your eyes and mouth get very dry. Sjögren's also may cause you to be very tired and to have pain in your joints. A small number of people may have problems with their lungs, kidneys, and nerves.

Even though there is no cure for Sjögren's, you can treat the symptoms. You can use artificial tears to keep your eyes moist. Saliva substitutes, water, or prescription medicines can help keep your mouth and throat moist.

Follow-up care is a key part of your treatment and safety. Be sure to make and go to all appointments, and call your doctor or nurse call line if you are having problems. It's also a good idea to know your test results and keep a list of the medicines you take.

How can you care for yourself at home?

For your eyes

  • Use artificial tears during the day. They come in different brands, so if one type does not help, try another. Try to use preservative-free drops. They may be easier on your eyes.
  • Use lubricating ointment at night. It is thicker and lasts longer than artificial tears, so you have less burning, dryness, and itching when you wake up in the morning. The ointment may blur your vision for a short time, so use it before going to bed.
  • Wear wraparound sunglasses to protect your eyes from wind and dust.
  • Avoid smoke. It irritates your eyes.
  • Keep makeup away from your eyes or you may want to avoid eye makeup.

For your mouth

  • Drink fluids during the day to keep your mouth moist. Try drinking small sips of water and rinsing your mouth a lot.
  • Use mouthwash or spray to keep your mouth wet.
  • Brush your teeth with fluoride toothpaste two times a day and after meals, and floss your teeth every day.
  • Visit the dentist two times a year, or more if needed, to prevent and treat tooth decay.
  • Use sugar-free gum or candies such as lemon drops. They increase saliva. (Sugar can increase your risk for cavities and yeast infections.)
  • Avoid over-the-counter medicines that can cause dryness. These include antihistamines, such as Benadryl or Chlor-Tripolon.

For other parts of your body

  • Take anti-inflammatory medicines if you have joint pain and swelling. These include ibuprofen (Advil, Motrin) and naproxen (Aleve). Read and follow all instructions on the label.
  • Use moisturizing skin creams or ointments during the day.
  • Use only moisturizing soaps while bathing. After bathing, apply skin creams or ointments.
  • Always wear sunscreen on exposed skin. Make sure to use a broad-spectrum sunscreen that has a sun protection factor (SPF) of 30 or higher. Use it every day, even when it is cloudy.
  • Use a vaporizer or humidifier to add moisture to your bedroom. Follow the directions for cleaning the machine.
  • Use saline (saltwater) nasal washes to help keep your nasal passages open and to wash out mucus and bacteria. You can buy saline nose drops at a grocery store or pharmacy. Or you can make your own at home by adding 1 teaspoon of salt and 1 teaspoon of baking soda to 2 cups of distilled water. If you make your own, fill a bulb syringe with the solution, insert the tip into your nostril, and squeeze gently. Blow your nose.
  • Use lubricants if you have vaginal dryness.
  • Take an over-the-counter antacid or acid reducer, such as Pepcid AC or Zantac 75, when needed to reduce heartburn. Be careful when you take over-the-counter antacid medicines. Many of these medicines have aspirin in them. Read the label to make sure that you are not taking more than the recommended dose. Too much aspirin can be harmful.

When should you call for help?

Watch closely for changes in your health, and be sure to contact your doctor or nurse call line if:

  • Your eyes and mouth are still very dry even with home care.
  • Your joint pain does not get better with over-the-counter medicine.
  • Your tiredness gets worse or makes it hard to do daily activities.

Where can you learn more?

Go to https://www.healthwise.net/patientEd

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