Questions and Answers About Sjögren's Syndrome

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Sjögren's Syndrome

Online version updated September 2016

Questions and Answers about Sjögren’s Syndrome

This publication contains general information about Sjögren's syndrome. It describes what Sjögren's

syndrome is and what the symptoms are. It also explains who gets Sjögren's syndrome and how it is

diagnosed and treated. If you have further questions after reading this publication, you may wish to discuss

them with your doctor.

What Is Sjögren’s Syndrome?

Sjögren’s (SHOW-grens) syndrome is an autoimmune disease; that is, a disease in which the immune

system turns against the body’s own cells. Normally, the immune system works to protect us from disease

by destroying harmful invading organisms like viruses and bacteria. In the case of Sjögren’s syndrome,

disease-fighting cells attack various organs, most notably the glands that produce tears and saliva. Damage

to these glands causes a reduction in both the quantity and quality of their secretions. This results in

symptoms that include dry eyes and dry mouth.

What Are the Symptoms of Sjögren’s Syndrome?

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Sjögren’s syndrome is also a rheumatic disease. These are diseases characterized by inflammation (signs

include redness or heat, swelling, and symptoms such as pain) and loss of function of one or more

connecting or supporting structures of the body. They especially affect joints, tendons, ligaments, bones,

and muscles.

Primary Versus Secondary Sjögren’s Syndrome

Sjögren’s syndrome is classified as either primary or secondary. The primary form occurs in people who do

not have other rheumatic disesaes. The secondary form occurs in people who already have another

rheumatic disease, most commonly rheumatoid arthritis (RA) or systemic lupus erythematosus (SLE). These

Who Gets Sjögren’s Syndrome?

What Causes Sjögren’s Syndrome?

How Is Sjögren’s Syndrome Diagnosed?

What Type of Doctor Diagnoses and Treats Sjögren’s Syndrome?

How Is Sjögren’s Syndrome Treated?

Other Diseases Linked to Sjögren’s Syndrome.

Does Sjögren’s Syndrome Cause Lymphoma?

What Research Is Being Conducted on Sjögren’s Syndrome?

Where Can People Find More Information About Sjögren’s Syndrome?

General Tips for Eye Care

The Importance of Oral Hygiene

Protect Your Voice

Medicines and Dryness
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people then develop dry eyes or dry mouth.

What Are the Symptoms of Sjögren’s Syndrome?

Sjögren’s syndrome can cause many symptoms. The main ones are:

Sjögren’s syndrome can also affect other parts of the body, causing symptoms such as:

Who Gets Sjögren’s Syndrome?

Sjögren’s syndrome can affect people of either sex and of any age, but most cases occur in women. The

average age for onset is late forties, but in rare cases, Sjögren’s syndrome is diagnosed in children.

What Causes Sjögren’s Syndrome?

Researchers think Sjögren’s syndrome is caused by a combination of genetic and environmental factors.

Several different genes appear to be involved, but scientists are not certain exactly which ones are linked to

the disease, because different genes seem to play a role in different people.

Scientists think that the trigger may be a viral or bacterial infection. The possibility that the endocrine and

nervous systems play a role in the disease is also under investigation.

How Is Sjögren’s Syndrome Diagnosed?

Your doctor will diagnose Sjögren’s syndrome based on your medical history, a physical exam, and results

from clinical or laboratory tests. During the exam, your doctor will check for clinical signs of Sjögren’s

syndrome, such as indications of mouth dryness or signs of other connective tissue diseases.

Dry eyes. Eyes affected by Sjögren’s syndrome may burn or itch. Some people say it feels like they

have sand in their eyes. Others have trouble with blurry vision, or are bothered by bright light,

especially fluorescent lighting.

Dry mouth. Dry mouth may feel chalky or like your mouth is full of cotton. It may be difficult to

swallow, speak, or taste. Because you lack the protective effects of saliva, you may develop more

dental decay (cavities) and mouth infections.

multiple sites of joint and muscle pain

prolonged dry skin

skin rashes on the extremities

chronic dry cough

vaginal dryness

numbness or tingling in the extremities

prolonged fatigue that interferes with daily life.
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Depending on what your doctor finds during the history and exam, he or she may want to perform some

tests or refer you to a specialist to establish the diagnosis of Sjögren’s syndrome and/or to see how severe

the problem is and whether the disease is affecting other parts of the body as well.

Because there are many causes of dry eyes and dry mouth (including many common medications, other

diseases, or previous treatment such as radiation of the head or neck), the doctor needs a thorough history

from the patient, and additional tests to see whether other parts of the body are affected.

Blood tests can determine the presence of antibodies common in Sjogren’s syndrome, including anti-SSA

and anti-SSB antibodies or rheumatoid factor. Other tests can identify decreases in tear and saliva

production. Biopsy of the saliva glands and other specialized tests can also help to confirm the diagnosis.

What Type of Doctor Diagnoses and Treats Sjögren’s Syndrome?

Because the symptoms of Sjögren’s syndrome develop gradually and are similar to those of many other

diseases, getting a diagnosis can take time. A person could see a number of doctors, any of whom could

diagnose the disease and be involved in its treatment. These might include a rheumatologist (a doctor who

specializes in diseases of the joints, muscles, and bones), a primary care physician, internist,

ophthalmologist (eye specialist), otolaryngologist (ear, nose, and throat specialist), or another specialist.

Usually a rheumatologist will coordinate treatment among a number of specialists.

How Is Sjögren’s Syndrome Treated?

Treatment can vary from person to person, depending on what parts of the body are affected.1

Treatments for Dry Eyes

There are many treatments you can try or your doctor can prescribe for dry eyes. Here are some that might

help:

1 All medicines can have side effects. Some medicines and side effects are mentioned in this publication.

Some side effects may be more severe than others. You should provider or pharmacist if you have any

questions about the possible side effects.

Eye drops. Available by prescription or over the counter under many brand names, these products

keep eyes moist. Some drops contain preservatives that might irritate your eyes. Drops without

preservatives usually don’t bother the eyes.

Ointments. Ointments are thicker than eye drops. Because they moisturize and protect the eye for

several hours, and may blur your vision, they are most effective during sleep.

Other therapies. Other therapies such as plugging or blocking the tear ducts, anti-inflammatory

medication, or surgery may be needed in more severe cases.
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General Tips for Eye Care

Treatments for Dry Mouth

There are many remedies for dry mouth. You can try some of them on your own. Your doctor may prescribe

others. Here are some many people find useful:

Don’t use eye drops that irritate your eyes. If one brand or prescription

bothers you, try another. Eye drops that do not contain preservatives are

usually essential for long-term use.

Practice blinking. You tend to blink less when reading or using the

computer. Remember to blink 5 to 6 times a minute.

Protect your eyes from drafts, breezes, and wind.

Put humidifiers in the rooms where you spend the most time, including the

bedroom, or install a humidifier in your heating and air conditioning unit.

Don’t smoke, and stay out of smoky rooms.

Apply mascara only to the tips of your lashes so it doesn’t get in your eyes.

If you use eyeliner or eye shadow, put it only on the skin above your

lashes, not on the sensitive skin under your lashes, close to your eyes.

Avoid facial creams on the lower lid skin at bedtime if you are awakening

with eye irritation.

Ask your doctor whether any medications that you are taking contribute to

dryness. If they do, ask how the dryness can be reduced.

Chewing gum and hard candy. If your salivary glands still produce some saliva, you can stimulate

them to make more by chewing gum or sucking on hard candy. However, gum and candy must be

sugar-free, because dry mouth makes you extremely prone to progressive dental decay (cavities).

Water. Take sips of water or another sugar-free, noncarbonated drink throughout the day to wet your

mouth, especially when you are eating or talking. Note that drinking large amounts of liquid throughout

the day will not make your mouth any less dry and will make you urinate more often. You should only

take small sips of liquid, but not too often. If you sip liquids every few minutes, it may reduce or remove

the mucus coating inside your mouth, increasing the feeling of dryness.

Lip balm. You can soothe dry, cracked lips by using oil- or petroleum-based lip balm or lipstick. If your

mouth hurts, your doctor may give you medicine in a mouth rinse, ointment, or gel to apply to the sore

areas to control pain and inflammation.

Other therapies. Other therapies such as saliva substitutes or medications that stimulate the salivary

glands to produce saliva are sometimes indicated.
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The Importance of Oral Hygiene

Natural saliva contains substances that rid the mouth of the bacteria that cause

dental decay (cavities) and mouth infections, so good oral hygiene is extremely

important when you have dry mouth. Here’s what you can do to prevent cavities

and infections:

Treatments for Symptoms in Other Parts of the Body

If you have extraglandular involvement, that is, a problem that extends beyond the moisture-producing

glands of your eyes and mouth, your doctor—or the appropriate specialist—may also treat those problems

using nonsteroidal anti-inflammatory drugs (NSAIDs),2 or immune-modifying drugs.

2 Warning: Side effects of NSAIDs include stomach problems; skin rashes; high blood pressure; fluid

retention; and liver, kidney, and heart problems. The longer a person uses NSAIDs, the more likely he or she

is to have side effects, ranging from mild to serious. Many other drugs cannot be taken when a patient is

being treated with NSAIDs, because NSAIDs alter the way the body uses or eliminates these other drugs.

Check with your health care provider or pharmacist before you take NSAIDs. NSAIDs should only be used

at the lowest dose possible for the shortest time needed.

Visit a dentist regularly, at least twice a year, to have your teeth examined

and cleaned.

Rinse your mouth with water several times a day. Don’t use mouthwash

that contains alcohol, because alcohol is drying.

Use toothpaste that contains fluoride to gently brush your teeth, gums, and

tongue after each meal and before bedtime. Nonfoaming toothpaste is less

drying.

Floss your teeth every day.

Avoid sugar between meals. That means choosing sugar-free gum, candy,

and soda. If you do eat or drink sugary foods, brush your teeth immediately

afterward.

See a dentist right away if you notice anything unusual or have continuous

burning or other oral symptoms.

Ask your dentist whether you need to take fluoride supplements, use a

fluoride gel at night, or have a varnish put on your teeth to protect the

enamel.
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Protect Your Voice

People with Sjögren’s syndrome can develop hoarseness if their vocal cords

become inflamed as part of the disease or become irritated from throat dryness

or coughing. To prevent further strain on your vocal cords, try not to clear your

throat before speaking. Instead, take a sip of water, chew sugar-free gum, or

suck on sugar-free candy. Or else make an “h” sound, hum, or laugh to gently

bring the vocal cords together so you can get sound out. Clearing your throat

does the same thing, but it’s hard on the vocal cords, and you want to avoid

irritating them further.

Other Diseases Linked to Sjögren’s Syndrome

Patients who have an autoimmune connective tissue disease other than Sjögren’s syndrome (see list below)

may subsequently develop the dry eyes and or dry mouth of Sjögren’s syndrome. They would then be

diagnosed as having secondary Sjögren’s syndrome, along with their primary connective tissue disease.

These other autoimmune connective tissue diseases include:

Does Sjögren’s Syndrome Cause Lymphoma?

A small percentage of people with Sjögren’s syndrome develop lymphoma, which involves salivary glands,

lymph nodes, the gastrointestinal tract, or the lungs. Persistent enlargement of a major salivary gland should

be carefully and regularly observed by your doctor and investigated further if it changes in size in a short

period of time. Other symptoms may include the following: (Note that many of these can be symptoms of

other problems, including Sjögren’s syndrome itself. Nevertheless, it is important to see your doctor if you

have any of these symptoms so that any problem can be diagnosed and treated as early as possible.)

Polymyositis. An inflammation of the muscles that causes weakness and pain, difficulty moving, and,

in some cases, problems breathing and swallowing. If the skin is inflamed too, it’s called

dermatomyositis.

Rheumatoid arthritis (RA). A form of arthritis that is characterized by severe inflammation of the

joints. This inflammation can eventually damage the surrounding bones (fingers, hands, knees, etc.).

Rheumatoid arthritis can also damage muscles, blood vessels, and major organs.

Scleroderma. A disease in which the body accumulates too much collagen, a protein commonly found

in the skin. The result is thick, tight skin and possibly damage to muscles, joints, and internal organs

such as the esophagus, intestines, lungs, heart, kidneys, and blood vessels.

Systemic lupus erythematosus (SLE). A disease that causes joint and muscle pain, weakness, skin

rashes, and, in more severe cases, heart, lung, kidney, and nervous system problems.
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If you’re worried that you might develop lymphoma, talk to your doctor to learn more about the disease, the

symptoms to watch for, any special medical care you might need, and what you can do to relieve your worry.

Medicines and Dryness

Certain drugs can contribute to eye and mouth dryness. If you take any of the

drugs listed below, ask your doctor whether they could be causing symptoms.

However, don’t stop taking them without asking your doctor—he or she may

already have adjusted the dose to help protect you against drying side effects or

chosen a drug that’s least likely to cause dryness. Drugs that can cause dryness

include:

What Research Is Being Conducted on Sjögren’s Syndrome?

Through basic research on the immune system, autoimmunity, genetics, and connective tissue diseases,

researchers continue to learn more about Sjögren’s syndrome. The hope is that a better understanding of

the disease and its causes will lead to better treatments and perhaps even prevention.

Some research into Sjögren’s syndrome include the following:

unexplained fever

night sweats

constant fatigue

unexplained weight loss

itchy skin

reddened patches on the skin.

antihistamines

decongestants

diuretics

some antidiarrhea drugs

some antipsychotic drugs

tranquilizers

some blood pressure medicines

antidepressants.

Genetic studies. Research has discovered that the STAT4 gene variant associated with rheumatoid
Questions and Answers About Sjögren's Syndrome

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Researchers continue to explore the genetic and environmental factors that cause Sjögren’s syndrome, with

the goal of creating novel diagnostic and therapeutic approaches. The National Institute of Arthritis and

Musculoskeletal and Skin Diseases (NIAMS) is supporting the Oklahoma Sjögren’s Syndrome Center of

Research Translation at the Oklahoma Medical Research Foundation in Oklahoma City.

The National Institute of Dental and Craniofacial Research conducts studies to help scientists understand,

manage, and treat Sjögren’s syndrome. If you think you might like to take part in a clinical trial, speak with

your doctor or check www.clinicaltrials.gov for a listing of trials for which you may be eligible.

More information on research is available from the following websites:

arthritis and lupus is also associated with Sjögren’s syndrome. This suggests that variants of this gene

play a crucial role in autoimmunity.

Immune system studies. Researchers are investigating the various components of the immune

system that may be involved in the autoimmune causes of Sjögren’s syndrome. For example, studies

are looking for autoantibodies that are unique to Sjögren’s, and whether blood tests can be developed

to detect them. Other research is investigating the role of T cells, another component of the immune

system, in Sjögren’s.

Hormonal factors. Because Sjögren’s syndrome affects mostly women, female reproductive

hormones may play a role. Although studies have shown that levels of estrogen and progesterone

differ little between women with Sjögren’s syndrome and those without, higher levels of prolactin (a

hormone that stimulates the production of milk after childbirth and the production of progesterone in

the ovary) are found in women with Sjögren’s syndrome. Research is also looking at how the disease

affects men and women differently.

Prevalence of extraglandular involvement. Studies have shown that neurological involvement and

Sjögren’s-related problems with the skin, including alopecia (a condition characterized by hair loss),

vitiligo (a condition in which areas of the skin lose their pigment and become white), and vasculitis (a

raised rash), may be more common than previously thought. Studies also indicate that identifying and

treating these problems in people with Sjögren’s syndrome is an important part of managing the

disease. Another study shows that clinical depression is also common among Sjögren’s syndrome

patients, and may warrant treatment.

Predicting lung involvement. Knowing who is at highest risk of certain complications can enable

doctors to identify and treat these problems earlier and more appropriately. Investigators are studying

proteins that are higher in people who later develop lung problems with primary Sjögren’s syndrome.

Role of infection. Doctors believe that infections may trigger Sjögren’s syndrome in people

genetically predisposed to the disease. Viral infection is under investigation as a possible trigger for

Sjögren’s syndrome and other autoimmune diseases.

Long-term relief for dry mouth. Scientists are exploring regenerative medicine and tissue

engineering strategies that may correct the underlying defects in Sjögren’s syndrome.
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Where Can People Find More Information About Sjögren’s Syndrome?

Other Resources

NIH Clinical Research Trials and You was designed to help people learn more about clinical trials,

why they matter, and how to participate. Visitors to the website will find information about the basics of

participating in a clinical trial, first-hand stories from clinical trial volunteers, explanations from

researchers, and links on how to search for a trial or enroll in a research-matching program.

ClinicalTrials.gov offers up-to-date information for locating federally and privately supported clinical

trials for a wide range of diseases and conditions.

NIH RePORTER is an electronic tool that allows users to search a repository of both intramural and

extramural NIH-funded research projects from the past 25 years and access publications (since 1985)

and patents resulting from NIH funding.

PubMed is a free service of the U.S. National Library of Medicine that lets you search millions of

journal citations and abstracts in the fields of medicine, nursing, dentistry, veterinary medicine, the

health care system, and preclinical sciences.

National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) 

Information Clearinghouse

National Institutes of Health

1 AMS Circle

Bethesda, MD 20892-3675

Phone: 301-495-4484

Toll free: 877-22-NIAMS (877-226-4267)

TTY: 301-565-2966

Fax: 301-718-6366

Email: NIAMSinfo@mail.nih.gov

Website: https://www.niams.nih.gov

If you need more information about available resources in your language or another language, please

visit our website or contact the NIAMS Information Clearinghouse at NIAMSinfo@mail.nih.gov.

National Eye Institute

National Institutes of Health

Website: http://www.nei.nih.gov

National Institute of Allergy and Infectious Diseases

National Institutes of Health

Website: https://www.niaid.nih.gov/Pages/default.aspx
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National Institute of Dental and Craniofacial Research

National Institutes of Health

Website: http://www.nidcr.nih.gov

National Institute of Dental and Craniofacial Research, 

Sjögren’s Syndrome Clinic

Website:

http://www.nidcr.nih.gov/Research/NIDCRLaboratories/MolecularPhysiology/SjogrensSyndrome/

National Institute of Neurological Disorders and Stroke

National Institutes of Health

Website: http://www.ninds.nih.gov

American Academy of Dermatology

Website: http://www.aad.org

American Academy of Ophthalmology

Website: http://www.aao.org/

American Association for Dental Research

Website: http://aadronline.org/

American College of Rheumatology

Website: https://www.rheumatology.org

American Dental Association

Website: http://www.ada.org

American Autoimmune Related Diseases Association, Inc.

Website: https://www.aarda.org/ (con información en español)

Arthritis Foundation

Website: https://www.arthritis.org
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Acknowledgments

The NIAMS gratefully acknowledges the assistance of the following individuals in the preparation and review

of the original version of this publication: Alan Moshell, M.D., and Ronald Wilder, M.D., Ph.D., NIAMS/NIH;

Kim B. Yancy, M.D., National Cancer Institute, Bethesda, MD; Elaine Alexander, M.D., Ph.D., Arena

Pharmaceuticals, San Diego, CA; Troy Daniels, D.D.S., M.S., Sögren’s International Collaborative Clinical

Alliance, University of California, San Francisco, CA; Philip C. Fox, D.D.S., Amarillo Biosciences, Cabin

John, MD; Stuart S. Kassan, M.D., University of Colorado Health Sciences Center, Denver, CO; Michael A.

Lemp, M.D., Georgetown and George Washington Universities, Washington, DC; Katherine Morland

Hammitt, Sjögren’s Syndrome Foundation, Bethesda, MD; Haralampos Moutsopoulos, M.D., National

University Medical School, Athens, Greece; J. Daniel Nelson, M.D., HealthPartners Medical Group and

Clinics, St. Paul, MN; Ann Parke, M.D., Professor of Medicine, University of Connecticut Health Center,

Farmington, CT; David A. Sullivan, Ph.D., Schepens Eye Research Institute and Harvard Medical School,

Boston, MA; and Jeffrey W. Wilson, M.D., M.B.A., Lynchburg Rheumatology Clinic, Lynchburg, VA.

The mission of the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS), a part of

Lupus Foundation of America

Website: http://www.lupus.org

Lupus Foundation of America

Website: http://www.lupus.org

The Myositis Association

Website: http://www.myositis.org (con información en español)

National Organization for Rare Disorders

Website: http://www.rarediseases.org

Scleroderma Foundation

Website: http://www.scleroderma.org (con información en español)

Scleroderma Research Foundation

Website: http://www.srfcure.org

Sjogren's Syndrome Foundation, Inc.

Website: http://www.sjogrens.org
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the U.S. Department of Health and Human Services’ National Institutes of Health (NIH), is to support

research into the causes, treatment, and prevention of arthritis and musculoskeletal and skin diseases; the

training of basic and clinical scientists to carry out this research; and the dissemination of information on

research progress in these diseases. The NIAMS Information Clearinghouse is a public service sponsored

by the NIAMS that provides health information and information sources. Additional information can be found

on the NIAMS website at www.niams.nih.gov/.

For your information

This publication contains information about medications used to treat the health condition discussed here.

When this publication was developed, we included the most up-to-date (accurate) information available.

Occasionally, new information on medication is released.

For updates and for any questions about any medications you are taking, please contact

U.S. Food and Drug Administration

Toll free: 888-INFO-FDA (888-463-6332)

Website: https://www.fda.gov

For additional information on specific medications, visit Drugs@FDA at

https://www.accessdata.fda.gov/scripts/cder/daf/. Drugs@FDA is a searchable catalog of FDA-approved

drug products.

For updates and questions about statistics, please contact

Centers for Disease Control and Prevention, National Center for Health Statistics

Toll free: 800-232-4636

Website: https://www.cdc.gov/nchs

This publication is not copyrighted. Readers are encouraged to duplicate and distribute as many copies as

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Additional copies of this publication are available from:

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Information Clearinghouse

National Institutes of Health

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Phone: 301-495-4484

Toll free: 877-22-NIAMS (877-226-4267)

TTY: 301-565-2966
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