Tips for Managing Sjögren’s Syndrome

Dr. Sara McCoy of UW Health Sjögren's Syndrome Clinic offers these tips for managing Sjögren's Syndrome:

Dry eyes

• Remember to blink 5 to 6 times per minute

• Avoid exposure to smoke, excessive wind and dry environments
  Protect your eyes from wind and drafts by using glasses or sunglasses that block airflow or

• add moisture. Some examples include:

  • Onion goggles

  • Panoptx eyewear

  • Safety glasses

  • Swim goggles

  • Moisture chamber glasses

  • Tranquileyes

• We also recommend that you place a wet washcloth over your eyes in dry environments, including plane travel

• Use over-the-counter artificial tears

• Do not use artificial tear brands that irritate your eyes. Try changing brands if an artificial tear is bothersome. Avoid eye drops that contain preservatives.

• Use over-the-counter ointments and gels for overnight use

• Use a humidifier in your bedroom or in your heating/air conditioning unit. Also, remember to sanitize your humidifier at least twice weekly if it does not self-sanitize.

• A common in Sjögren's syndrome is called blepharitis and is an inflammation of eyelids and lid margins.

  • We recommend the use of warm compresses, lid massage and lid hygiene.

• When applying mascara, only apply to the tips of your eyelashes. Do not put eyeliner or eyeshadow under your lashes or close to your eyes.

• Do not use facial creams on the skin of the lower lids at bedtime if you find your eyes are irritated at night.

• Find out from your doctor if any of your medications are contributing to your dry eye.

• Talk with your ophthalmologist about the use of prescription drugs such as Restasis or Xiidra

Trouble swallowing medications

• Ask your doctor or pharmacist if your tablets can be crushed or capsules can be opened and mixed with water. This will only apply to certain medications.

• Moisten your mouth before attempting to swallow a pill

• Try cutting tablets into halves or quarters and swallow each portion individually

• Place the pill in the center of your tongue before attempting to swallow

• Immediately sip water and throw your head back to swallow

• Try chewing food, place the pill in the food in your mouth and then swallow the pill with the food

• Put your pill in applesauce or pudding to swallow

• After swallowing the pill, follow it with food

• Try the pop-bottle method: put the tablet on your tongue, put your lips over/around the opening of a bottle of water, keep your lips around the neck of the bottle and use a sucking motion to drink the water.

• Use a straw to drink the water to aid with swallowing a pill

• Put your chin to your chest when swallowing

Hoarseness

• Take a sip of water or use sugar-free gum or candy before speaking
  Try not to clear your throat to minimize the irritation that can do to your vocal cords
  Make an "h" sound, laugh or hum gently to allow your vocal cords to make sounds. This does the same thing as clearing your throat but is not as harsh on your vocal cords.

Dry mouth

• General mouth care

  • Brush teeth twice daily

  • Floss daily

  • Use toothpaste with fluoride

  • Avoid sugary foods. If you do eat sugary foods, brush your teeth immediately afterward.

  • Visit your dentist twice a year. Your dentist may suggest prescription strength fluoride.

• Chew sugar-free gum or hard candy to promote saliva production

• Take sips of water or sugar-free non-carbonated beverages throughout the day. Drinking large amounts of liquid will not make your mouth less dry and may lead to frequent urination. You should take small sips but not too often. Too frequently can lead to an increased feeling of dryness.

• Use oil or petroleum-based lip balm to soothe dry lips

• Use wetting agents, such as Biotene, MouthKote or NeutraSal. Alternatively, you can also mix ¼ to ½ teaspoon of oil (olive oil or liquid omega-3) in water.

• Discuss your prescription medications with your primary care doctor to determine if any medications could be contributing to dry mouth.

• Avoid frequent snacking, acidic foods and foods with simple sugars

• Discuss the use of prescription medications, such as Pilocarpine or Cevimeline, with your provider

Dry nose/sinuses

• Keep humidity in your home between 55-65%

• Use humidifiers in your bedroom. Make sure to sterilize at least twice a week if you do not have a self-cleaning humidifier.

• Avoid dry environments, alcohol and smoke

• Try a topical agent such as Vaseline or Ponaris

• Use over-the-counter nasal sprays or buffered saline up as frequently as every hour. Over-the-counter gels such as Rhinaris and AYR may last longer and could be used at night before going to sleep.

Vaginal dryness

• We recommend over-the-counter vaginal moisturizers, such as Replens, Luvena or Feminease

• We recommend lubrication during intercourse. Some examples include K-Y jelly or Astroglide

• A topical vaginal hormone (estrogen) may help some women as well

Salivary gland swelling

• We recommend massage of the salivary gland. Massage in a circular motion from just below your ear, forward over your jaw bone, down over the jaw bone and then back up to the earlobe.

• Apply warm compresses

• Suck sugar-free candy, preferably lemon, or chew sugar-free gum
  Discuss potential prescriptions that stimulate saliva with your physician

Dry skin

• Bathe with less frequency. Instead, wash targeted areas for hygiene maintenance.

• Take short warm baths or showers and try to avoid hot water

• Upon exiting the shower, pat dry and moisturize. Some moisturizers we recommend include:

  • Petroleum jelly

  • Safflower oil

  • Vitamin E

  • Olive oil

  • Canola oil

  • Crisco

• Avoid fabric softeners that may irritate the skin