Q. What is Sjögren’s syndrome?

A. Sjögren’s syndrome is a chronic autoimmune disease in which a person’s white blood cells attack his or her moisture-producing glands. Today, as many as four million Americans are living with this disease. Learn more at our About Sjögren’s Syndrome page.

Q. Who is most likely to develop Sjögren’s syndrome?

A. Nine out of ten Sjögren’s patients are women. The average age of diagnosis is late 40s, although it can occur in all age groups, including children, and in both sexes.

Q. What are the symptoms of Sjögren’s syndrome?

A. The most common symptoms include dry eyes, dry mouth, fatigue and musculoskeletal pain. However, no two people have the exact same set of symptoms so patients should remember to share all their symptoms with their primary healthcare provider to receive a proper diagnosis. See the website’s symptoms page for a full list of Sjogren's syndrome symptoms.

Q. Is it easy to diagnose Sjögren’s syndrome?

A. Sjögren’s syndrome often is undiagnosed or misdiagnosed. The symptoms of Sjögren’s syndrome may mimic those of menopause, drug side effects, allergies, or medical conditions such as lupus, rheumatoid arthritis, fibromyalgia, chronic fatigue syndrome, and multiple sclerosis. Because all symptoms are not always present at the same time and because Sjögren’s can involve several body systems, physicians, eye care providers and dentists sometimes treat each symptom individually and do not recognize that a systemic disease is present. The average time from onset of symptoms to diagnosis is 6.5 years.

Q. How is Sjögren’s formally diagnosed?

A. Sjögren’s syndrome can be difficult to diagnose. No single test will confirm the diagnosis and Sjögren’s may appear in many different forms in different patients. Click here to view our page on diagnosing Sjögren’s syndrome.

Q. What kind of doctor treats Sjögren’s?

A. Rheumatologists have primary responsibility for managing Sjögren’s syndrome. Patients are also seen and treated by specialists such as eye care providers, dentists and other specialists depending on a patient’s complications.

Q. Is there a cure? What treatments are available?

A. Currently, there is no cure for Sjögren’s syndrome.  However, treatments may improve various symptoms and prevent complications. Prescription medicines for dry eyes and dry mouth are available. A number of over-the-counter products may also be used to alleviate different types of dryness. Immunosuppressive medications are also used to treat the serious internal organ manifestations.

Q. What is the difference between Primary Sjögren’s versus Secondary Sjögren’s?

A. Sjögren’s syndrome is usually classified by a clinician as either primary or secondary. Primary Sjögren’s occurs by itself and secondary Sjögren’s occurs when another connective tissue disease is present. However, this classification does not always correlate with the severity of symptoms or complications. Primary Sjögren’s and Secondary Sjögren’s patients can all experience the same level of discomfort, complications and seriousness of their disease.

Q. Will I die from Sjögren’s syndrome?

A. Sjögren’s syndrome is serious but generally not fatal if complications are diagnosed and treated early. Sjögren’s syndrome patients must be monitored carefully for development of internal organ involvement, related autoimmune diseases and other serious complications. In particular, patients should be aware that the incidence of lymphomas (cancer of the lymph nodes) is significantly higher in people with Sjögren’s compared to the general population.

Q. What causes the dryness in Sjögren’s syndrome?

A. In the autommune attack that causes Sjögren’s, disease-fighting white blood cells called lymphocytes target the glands that produce moisture – primarily the lacrimal (tear) and salivary (saliva) glands. Although no one knows exactly how damage occurs, damaged glands can no longer produce tears and saliva, and eye and mouth dryness result. When the skin, sinuses, airways and vaginal tissues are affected, dryness occurs in those places as well.

Q. What research is being done on Sjögren’s syndrome?

A. Through basic research on the immune system, autoimmunity, genetics and connective tissue diseases, researchers are continuing to learn more about Sjögren’s syndrome. As they gain a better understanding of the genes involved and which environmental and hormonal factors trigger the disease, we will be able to develop more effective treatments for Sjögren’s syndrome.

In addition, clinical research is being conducted around the United States. These research projects involve studying patients in a clinical setting to learn more about their symptoms, what treatments work and under what circumstances, and how best to improve quality of life.

Learn about some of the cutting-edge research that the SSF is funding.

Q. I understand there’s a new flu vaccine for the 2010-11 flu season. Do you recommend it for Sjögren's patients?

A. As a person with Sjögren's Syndrome you are wondering about whether or not you should have a flu shot this year.

First it’s good to have some information about the flu vaccine itself.  The seasonal flu vaccine protects against three influenza viruses that research indicates will likely be most common during the upcoming flu season. The 2010-2011 flu vaccine will protect against 2009 H1N1, and two other influenza viruses (an H3N2 virus and an influenza B virus). Each influenza virus has a H and a N determinant which are variable. The viruses in the vaccine change each year based on international surveillance and infectious disease experts estimations about which types and strains of viruses will circulate in the next year. Due to the high mutation rate of the flu virus a particular vaccine formulation is effective for at most about a year. About two weeks after getting the flu vaccine, a person’s body will build up antibodies against the flu virus strains that are in the vaccine.

There are two main vaccines.

The "flu shot" — an inactivated vaccine (containing killed virus) that is given with a needle. The flu shot is approved for use in people older than 6 months, including healthy people and people with chronic medical conditions.

The nasal-spray flu vaccine —a vaccine made with live, weakened flu viruses that do not cause the flu (sometimes called LAIV for "live attenuated influenza vaccine" or FluMist®). LAIV (FluMist®) is approved for use in healthy  people 2-49 years of age who are not pregnant. It is not recommended for people with compromised immune systems.

So what if you don’t get the flu shot? Worldwide, seasonal influenza kills an estimated 250,000 to 500,000 people each year. The majority of deaths in the United States occur in adults age of 65 and over, however, people with chronic disease can be at more risk of complications of the flu. Even if you are not at higher risk of complications, you may live with someone who is, and you could expose that person to the flu if you contract it. 

What symptoms do you get with the flu? You may experience high fever, sore throat, generalized body aching, headache, and cough. I contracted the flu in 1975 when I was an Intern, and felt so bad that if I had died then I wouldn’t have minded it. I have gotten the flu shot every year since.

What complications could occur from the flu shot? Soreness at the site of injection is probably the most common adverse event. Occasionally, a systemic effect such as low grade fever, runny nose, or cough may occur.  A very very rare neurological complication called Guillan-Barre syndrome has been linked to the flu shot. In this condition, the body’s immune system attacks the nerves. Fortunately most people recover, but it can be quite debilitating during the course of the illness.

Who shouldn’t get the flu vaccine? People who have had an allergic reaction to a flu shot in the past, people with an allergy to eggs, or a person who previously developed Guillain-Barre syndrome within 6 weeks of getting a flu shot.

I recommend that all my patients with Sjögren's get the flu shot each year. Save yourself the misery, the inconvenience, the risk of infecting a love one, and the chance of dying this coming flu season: get the flu shot.

~ Dan Small, M.D.