I have Sjogren's syndrome and have been managing my symptoms fairly well. However, I have problems with parotid gland swelling and pain. I drink a lot of water, but it doesn't seem to help the swelling and pain. Is there something else I can do?

O.D.

Sjogren's syndrome is an autoimmune disease, an illness in which the body's immune system mistakenly attacks itself -- not haphazardly, for only particular tissues are affected. Dry eyes and dry mouth are the hallmark of Sjogren's syndrome, but dryness of the nose, throat, skin and vagina are also occasionally noted. As with any autoimmune disease, chronic fatigue troubles some patients. Sjogren's syndrome often accompanies other autoimmune diseases such as rheumatoid arthritis. Physicians may suspect Sjogren's is present when a patient known to have another autoimmune disease complains of dry eyes or mouth. Certain blood tests support the diagnosis of Sjogren's disease, but a salivary-gland biopsy is essential to be certain of the diagnosis. The biopsy is most commonly done by an ear, nose and throat surgeon (ENT), who can remove a few minor salivary glands through a small incision on the lower lip.

One critical aspect of your question is something that you may not have considered: Have you been correctly diagnosed with Sjogren's syndrome? It is an unfortunate fact of life that, thanks to HMOs and other insurers, medicine is not always practiced as it should be. If you have not had a biopsy to prove the diagnosis, you should ask your doctor, "How can you be certain that I have Sjogren's syndrome?"

Recurrent, painful swelling of the parotid gland (located on the side of the face, in front of the ear) is known as "chronic sialadenitis," and Sjogren's syndrome is only one of many possible causes. In all cases, there is obstruction of the flow of saliva through the parotid duct (the tube that channels saliva from the parotid gland into the mouth). With Sjogren's syndrome, obstruction presumably occurs because swelling of the gland puts pressure on the duct.

Conservative treatment of chronic sialadenitis involves the following measures:

• Staying well hydrated. I recommend that patients drink eight to 10 eight-ounce glasses per day of nonalcoholic, noncaffeinated beverages. Avoiding any alcohol or caffeine is helpful.
  
• Stimulating the flow of saliva. I often recommend that patients suck on sour candies, but this is damaging to the teeth in the long run. A safer course is to chew sugar-free gum frequently throughout the day. FIRM massage of the parotid gland (no bruises, please) can also help stimulate salivary flow.
  
• Using soothing warm packs when the glands are particularly tender.
  
• Watching for infection. If one or both parotids becomes very swollen, tender and red, I worry about bacterial infection. A staphylococcus species is the usual culprit. Antibiotics are necessary, and it is imperative that the antibiotic kill staphylococcus. Penicillin, ampicillin (Omnipen) and amoxicillin (Amoxil) are NOT appropriate antibiotics.
  

If your parotid swelling is related to Sjogren's syndrome, you may want to ask your doctor about more aggressive treatment of Sjogren's syndrome. Ask him or her about the drug hydroxychloroquine (Plaquenil) and about drugs to suppress the immune system. All of these medicines have associated risks and side effects, so you will need to have a careful discussion with your doctor before you can knowledgeably weigh your options.

If conservative treatment consistently fails to help you, and if more aggressive treatment of your Sjogren's disease is ineffective, surgical removal of the parotid(s) is an effective option OF LAST RESORT. This operation (called "total parotidectomy") carries with it risk to the nerve that controls the muscles of facial expression and will inevitably leave you with a much drier mouth.