Dry mouth is a major symptom of Sjögren’s syndrome.

[editor's note: This Self-Help booklet was written in first-person by Sjögren’s syndrome patient Dona Frosio]

Living with dry mouth can be challenging and I have met many patients who use all different types of treatment options, so I will do my best to list some of the most common in this section.

First, however, I must stress that good regular oral hygiene is a must! Most Sjögren’s patients no longer produce sufficient quantities of protective saliva. Not only can that make our mouths feel dry, but also our teeth can be damaged. Most people don’t realize the protective value of saliva. They think it’s just moisturizing their mouth, when in reality it’s helping to recoat their teeth with important minerals that will slow down cavities and infection. Without saliva, you have a higher chance of infections and quick moving cavities.

Second, I encourage you to ask your dentist to be your partner in preventing oral problems. Your dentist can instruct you how to brush and floss properly and remind you when you are due for checkups. He can also prescribe fluoride gel for you to use at home as well as instruct you how to stimulate saliva.

Some dentists will encourage you to chew sugar-free gum or suck on a sugar-free candy to stimulate saliva. Others will encourage you to sip water throughout the day. Remember not to over sip since you will wash away the good saliva you are producing and lose the benefits from that saliva. Some dentists will tell you not to drink bottled water as your tap water may contain the extra fluoride protection you need.

Also, there are some great new products that include mouth moisturizers, gels, sprays and specialized mouth washes for dry mouth patients. I encourage you to try these products because they all have different benefits and I am confident you will find one that you will like. It may take some trial and error but rest assured, once you find a product, you’ll be in love with it.

Prescription products which treat dry mouth by stimulating more saliva in patients with Sjogren’s syndrome are Evoxac® (cevimeline HCl) and Salagen® tablets (pilocarpine). You can ask your dentist or rheumatologist about the benefits and side effects of each product. Many patients find great dry mouth help from them and some patients even find that they help stimulate tears.

Below are a few tips on how to survive your next dental visit. The list was developed by a fellow Sjögren’s patient who also happens to be a Registered Dental Hygienist.

• Carry your throat spray or favorite rescue moisturizer with you.
• Alert the dental personnel that your dry mouth necessitates some extra consideration.
• Take control of the suction so you use it only when you need it.
• Ask for a spritz of water to rinse your tongue when they rinse off the place they are working (at least my dry mouth patients really like this).
• Arrange for some little signal at the beginning of the appointment so you can let them know if you need to take a break.
• Bring sun glasses if the lights might bother your eyes and use your moisturizing drops righ before they call you into the exam room.
• Get plenty of rest the night before to increase your ability to cope!
• Have more frequent dental hygiene visits.

Finally, remind your rheumatologist about your dry mouth problems. He can review your list of medications to see if any of them are causing dry mouth side effects as well as consider other options to help with salivary function.

salivary glands
Your salivary glands are affected by Sjögren’s syndrome. Sometimes they may hurt, especially the parotid glands located in the front of your ears. Here are some instructions from The Syndrome Sjögren’s Handbook to massage your salivary glands if a plug of mucus is the problem:

“Gently massage the area just below the bottom of the earlobe with the fleshy part of your index and middle fingers. Go forward toward the end of the jawbone, slightly downward and over the jawbone, and then up again toward the tip of the earlobe. This sometimes helps to dislodge a mucous plug in a duct, relieving the pain caused by a blockage.”

I also get pain relief by using a warm rice bag. Just microwave a minute or two and apply to the face. You can buy these or make one. The one I made is about 6“ wide by 15“ long. A long tube sock will also work and will take about two cups of rice (plain, uncooked and not instant!) Great for sore joints and muscles too. Remember to test the temperature as every microwave is different.