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Sjögren's Syndrome FAQ'S
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Page:
* What Are the Symptoms of Sjögren's Syndrome?
* 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?
* What Can I Do About Dry Eyes?
* What Can I Do About Dry Mouth?
* What Other Parts of the Body Are Involved in Sjögren's Syndrome?
* Does Sjögren's Syndrome Cause Lymphoma?
* What Research Is Being Done on Sjögren's Syndrome?
* Where Can People Find More Information About Sjögren's Syndrome?
* Acknowledgments
Sjögren's (SHOW-grins) syndrome is an autoimmune disease--that is, a disease in which the
immune system turns against the body's own cells. In Sjögren's syndrome, the immune
system targets moisture-producing glands and causes dryness in the mouth and eyes. Other
parts of the body can be affected as well, resulting in a wide range of possible symptoms.
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 the glands that produce tears and saliva (the lacrimal and
salivary glands). Damage to these glands keeps them from working properly and causes dry
eyes and dry mouth. In technical terms, dry eyes are called keratoconjunctivitis sicca, or
KCS, and dry mouth is called xerostomia. Your doctor may use these terms when talking to
you about Sjögren's syndrome.
The disease can affect other glands too, such as those in the stomach, pancreas, and
intestines, and can cause dryness in other places that need moisture, such as the nose,
throat, airways, and skin.
You might hear Sjögren's syndrome called a rheumatic disease. A rheumatic disease causes
inflammation in joints, muscles, skin, or other body tissue, and Sjögren's can do that.
The many forms of arthritis, which often involve inflammation in the joints, among other
problems, are examples of rheumatic diseases. Sjögren's is also considered a disorder of
connective tissue, which is the framework of the body that supports organs and tissues
(joints, muscles, and skin).
Primary versus Secondary Sjögren's Syndrome
Sjögren's syndrome is classified as either primary or secondary disease. Primary
Sjögren's occurs by itself, and secondary Sjögren's occurs with another disease. Both
are systemic disorders, although the symptoms in primary are more restricted.
In primary Sjögren's syndrome, the doctor can trace the symptoms to problems with the
tear and saliva glands. People with primary disease are more likely to have certain
antibodies (substances that help fight a particular disease) circulating in their blood
than people with secondary disease. These antibodies are called SS-A and SS-B. People with
primary Sjögren's are more likely to have antinuclear antibodies (ANAs) in their blood.
ANAs are autoantibodies, which are directed against the body.
In secondary Sjögren's syndrome, the person had an autoimmune disease like rheumatoid
arthritis or lupus before Sjögren's developed. People with this type tend to have more
health problems because they have two diseases, and they are also less likely to have the
antibodies associated with primary Sjögren's.
What Are the Symptoms of Sjögren's Syndrome?
The main symptoms are
*Dry eyes--Your eyes may be red and burn and itch. People say it feels like they have sand
in their eyes. Also, your vision may be blurry, and bright light, especially fluorescent
lighting, might bother you.
*Dry mouth--Dry mouth feels like a mouth full of cotton. It's difficult to swallow, speak,
and taste. Your sense of smell can change, and you may develop a dry cough. Also, because
you lack the protective effects of saliva, dry mouth increases your chances of developing
cavities and mouth infections.
Both primary and secondary Sjögren's syndrome can affect other parts of the body as well,
including the skin, joints, lungs, kidneys, blood vessels, and nervous system, and cause
symptoms such as
*Dry skin
*Skin rashes
*Thyroid problems
*Joint and muscle pain
*Pneumonia
*Vaginal dryness
*Numbness and tingling in the extremities
When Sjögren's affects other parts of the body, the condition is called extraglandular
involvement because the problems extend beyond the tear and salivary glands. These
problems are described in more detail later.
Finally, Sjögren's can cause extreme fatigue that can seriously interfere with daily
life.
What Causes Dryness in Sjögren's Syndrome?
In the autoimmune attack that causes Sjögren's, disease-fighting 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, too.
Who Gets Sjögren's Syndrome?
Experts believe 1 to 4 million people have the disease. Most--90 percent---are women. It
can occur at any age, but it usually is diagnosed after age 40 and can affect people of
all races and ethnic backgrounds. It's rare in children, but it can occur.
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 since different genes seem to
play a role in different people. For example, there is one gene that predisposes
Caucasians to the disease. Other genes are linked to Sjögren's in people of Japanese,
Chinese, and African American descent. Simply having one of these genes will not cause a
person to develop the disease, however. Some sort of trigger must activate the immune
system.
Scientists think that the trigger may be a viral or bacterial infection. It might work
like this: A person who has a Sjögren's-associated gene gets a viral infection. The virus
stimulates the immune system to act, but the gene alters the attack, sending fighter cells
(lymphocytes) to the eye and mouth glands. Once there, the lymphocytes attack healthy
cells, causing the inflammation that damages the glands and keeps them from working
properly. These fighter cells are supposed to die after their attack in a natural process
called apoptosis, but in people with Sjögren's syndrome, they continue to attack, causing
further damage. Scientists think that resistance to apoptosis may be genetic.
The possibility that the endocrine and nervous systems play a role is also under
investigation.
How Is Sjögren's Syndrome Diagnosed?
The doctor will first take a detailed medical history, which includes asking questions
about general health, symptoms, family medical history, alcohol consumption, smoking, or
use of drugs or medications. The doctor will also do a complete physical exam to check for
other signs of Sjögren's.
You may have some tests, too. First, the doctor will want to check your eyes and mouth to
see whether Sjögren's is causing your symptoms and how severe the problem is. Then, the
doctor may do other tests to see whether the disease is elsewhere in the body as well.
Common eye and mouth tests are
*Schirmer test--This test measures tears to see how the lacrimal gland is working. It can
be done in two ways: In Schirmer I, the doctor puts thin paper strips under the lower
eyelids and measures the amount of wetness on the paper after 5 minutes. People with
Sjögren's usually produce less than 8 millimeters of tears. The Schirmer II test is
similar, but the doctor uses a cotton swab to stimulate a tear reflex inside the nose.
*Staining with vital dyes (rose bengal or lissamine green)--The tests show how much damage
dryness has done to the surface of the eye. The doctor puts a drop of a liquid containing
a dye into the lower eye lid. These drops stain on the surface of the eye, highlighting
any areas of injury.
*Slit lamp examination--This test shows how severe the dryness is and whether the outside
of the eye is inflamed. An ophthalmologist (eye specialist) uses equipment that magnifies
to carefully examine the eye.
*Mouth exam--The doctor will look in the mouth for signs of dryness and to see whether any
of the major salivary glands are swollen. Signs of dryness include a dry, sticky mouth;
cavities; thick saliva, or none at all; a smooth look to the tongue; redness in the mouth;
dry, cracked lips; and sores at the corners of the mouth. The doctor might also try to get
a sample of saliva to see how much the glands are producing and to check its quality.
*Salivary gland biopsy of the lip--This test is the best way to find out whether dry mouth
is caused by Sjögren's syndrome. The doctor removes tiny minor salivary glands from the
inside of the lower lip and examines them under the microscope. If the glands contain
lymphocytes in a particular pattern, the test is positive for Sjögren's syndrome.
Because there are many causes of dry eyes and dry mouth, the doctor will take other
possible causes into account. Generally, you are considered to have definite Sjögren's if
you have dry eyes, dry mouth, and a positive lip biopsy. But the doctor may decide to do
additional tests to see whether other parts of the body are affected. These tests may
include
*Routine blood tests--The doctor will take blood samples to check blood count and blood
sugar level, and to see how the liver and kidneys are working.
*Immunological tests--These blood tests check for antibodies commonly found in the blood
of people with Sjögren's syndrome. For example:
Antithyroid antibodies are created when antibodies migrate out of the salivary glands into
the thyroid gland. Antithyroid antibodies cause thyroiditis (inflammation of the thyroid),
a common problem in people with Sjögren's.
Immunoglobulins and gamma globulins are antibodies that everyone has in their blood, but
people with Sjögren's usually have too many of them.
Rheumatoid factors (RFs) are found in the blood of people with rheumatoid arthritis, as
well as in people with Sjögren's. Substances known as cryoglobulins may be detected;
these indicate risk of lymphoma.
Similarly, the presence of antinuclear antibodies (ANAs) can indicate an autoimmune
disorder, including Sjögren's.
Sjögren's antibodies, called SS-A (or SS-Ro) and SS-B (or SS-La), are specific
antinuclear antibodies common in people with Sjögren's. However, you can have Sjögren's
without having these ANAs.
*Chest x ray--Sjögren's can cause inflammation in the lungs, so the doctor may want to
take an x ray to check them.
*Urinalysis--The doctor will probably test a sample of your urine to see how well the
kidneys are working.
What Type of Doctor Diagnoses and Treats Sjögren's Syndrome?
Because the symptoms of Sjögren's are similar to those of many other diseases, getting a
diagnosis can take time--in fact, the average time from first symptom to diagnosis ranges
from 2 to 8 years. During those years, depending on the symptoms, a person might see a
number of doctors, any of whom may diagnose the disease and be involved in treatment.
Usually, a rheumatologist (a doctor who specializes in diseases of the joints, muscles,
and bones) will coordinate treatment among a number of specialists. Other doctors who may
be involved include
*Allergist
*Dentist
*Dermatologist (skin specialist)
*Gastroenterologist (digestive disease specialist)
*Gynecologist (women's reproductive health specialist)
*Neurologist (nerve and brain specialist)
*Ophthalmologist (eye specialist)
*Otolaryngologist (ear, nose, and throat specialist)
*Pulmonologist (lung specialist)
*Urologist
How Is Sjögren's Syndrome Treated?
Treatment is different for each person, depending on what parts of the body are affected.
But in all cases, the doctor will help relieve your symptoms, especially dryness. For
example, you can use artificial tears to help with dry eyes and saliva stimulants and
mouth lubricants for dry mouth. Treatment for dryness is described in more detail below.
If you have extraglandular involvement, your doctor--or the appropriate specialist--will
also treat those problems. Treatment may include nonsteroidal anti-inflammatory drugs for
joint or muscle pain, saliva- and mucus-stimulating drugs for nose and throat dryness, and
corticosteroids or drugs that suppress the immune system for lung, kidney, blood vessel,
or nervous system problems. Hydroxychloroquine, methotrexate, and cyclophosphamide are
examples of such immunosuppressants (drugs that suppress the immune system).
What Can I Do About Dry Eyes?
Artificial tears can help. They come in different thicknesses, so you may have to
experiment to find the right one. Some drops contain preservatives that might irritate
your eyes. Drops without preservatives don't usually bother the eyes. Nonpreserved tears
typically come in single-dose packages to prevent contamination with bacteria.
At night, an eye ointment might provide more relief. Ointments are thicker than artificial
tears and moisturize and protect the eye for several hours. They may blur your vision,
which is why some people prefer to use them while they sleep.
Hydroxypropyl methylcellulose (Lacriserts*) is a chemical that lubricates the surface of
the eye and slows the evaporation of natural tears. It comes in a small pellet that you
put in your lower eyelid. When you add artificial tears, the pellet dissolves and forms a
film over your own tears that traps the moisture.
Another alternative is surgery to close the tear ducts that drain tears from the eye. The
surgery is called punctal occlusion. For a temporary closure, the doctor inserts collagen
or silicone plugs into the ducts. Collagen plugs eventually dissolve, and silicone plugs
are "permanent" until they are removed or fall out. For a longer lasting effect,
the doctor can use a laser or cautery to seal the ducts.
* Brand names included in this booklet are provided as examples only, and their inclusion
does not mean that these products are endorsed by the National Institutes of Health or any
other Government agency. Also, if a particular brand name is not mentioned, this does not
mean or imply that the product is unsatisfactory.
General Tips for Eye Care
*Don't use artificial tears that irritate your eyes--try another brand or preparation.
*Nonpreserved drops may be more comfortable.
*Blink several times a minute while reading or working on the computer.
*Protect your eyes from drafts, breezes, and wind.
*Put a humidifier 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.
*Ask your doctor whether any of your medications contribute to dryness and, if so, how to
reduce that effect.
What Can I Do About Dry Mouth?
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 cavities. Take sips of water or another sugar free
drink often throughout the day to wet your mouth, especially when you are eating or
talking. Note that you should take sips of water--drinking large amounts of liquid
throughout the day will not make your mouth any less dry. It will only make you urinate
more often and may strip your mouth of mucus, causing even more dryness. You can soothe
dry, cracked lips by using oil- or petroleum-based lip balm or lipstick. If your mouth
hurts, the doctor may give you medicine in a mouth rinse, ointment, or gel to apply to the
sore areas to control pain and inflammation.
If you produce very little saliva or none at all, your doctor might recommend a saliva
substitute. These products mimic some of the properties of saliva, which means they make
the mouth feel wet, and if they contain fluoride, they can help prevent cavities.
Gel-based saliva substitutes tend to give the longest relief, but all saliva products are
limited since you eventually swallow them.
At least two drugs that stimulate the salivary glands to produce saliva are available.
These are pilocarpine and cevimeline. The effects last for a few hours, and you can take
them three or four times a day. However, they are not suitable for everyone, so talk to
your doctor about whether they might help you.
People with dry mouth can easily get mouth infections. Candidiasis, a fungal mouth
infection, is one of the most commonly seen in people with Sjögren's. It most often shows
up as white patches inside the mouth that you can scrape off, or as red, burning areas in
the mouth. Candidiasis is treated with antifungal drugs. Various viruses and bacteria can
also cause infections; they're treated with the appropriate antiviral or antibiotic
medicines.
The Importance of Oral Hygiene
Natural saliva contains substances that rid the mouth of the bacteria that cause 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:
*Visit a dentist at least three times 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 fluoride toothpaste 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. That means choosing sugar-free gum, candy, and soda. If you do eat or drink
sugary foods, brush your teeth immediately afterward.
*Look at your mouth every day to check for redness or sores. See a dentist right away if
you notice anything unusual or have any mouth pain or bleeding.
*Ask your dentist whether you need to take fluoride supplements, use a fluoride gel at
night, or have a protective varnish put on your teeth to protect the enamel.
What Other Parts of the Body Are Involved in Sjögren's Syndrome?
The autoimmune response that causes dry eyes and mouth can cause inflammation throughout
the body. People with Sjögren's often have skin, lung, kidney, and nerve problems, as
well as disorders of the digestive system and connective tissue. Following are examples of
extraglandular problems.
Skin Problems
About half of the people who have Sjögren's have dry skin. Some experience only itching,
but it can be severe. Others develop cracked, split skin that can easily become infected.
Infection is a risk for people with itchy skin, too, particularly if they scratch
vigorously. The skin may darken in infected areas, but it returns to normal when the
infection clears up and the scratching stops.
To treat dry skin, apply heavy moisturizing creams and ointments three or four times a day
to trap moisture in the skin. Lotions, which are lighter than creams and ointments, aren't
recommended because they evaporate quickly and can contribute to dry skin. Also, doctors
suggest that you take only a short shower (less than 5 minutes), use a moisturizing soap,
pat your skin almost dry, and then cover it with a cream or ointment. If you take baths,
it's a good idea to soak for 10 to 15 minutes to give your skin time to absorb moisture.
Having a humidifier in the bedroom can help hydrate your skin, too. If these steps don't
help the itching, your doctor might recommend that you use a skin cream or ointment
containing steroids.
Some patients who have Sjögren's, particularly those who have lupus, are sensitive to
sunlight and can get painful burns from even a little sun exposure, such as through a
window. So, if you're sensitive to sunlight, you need to wear sunscreen (at least SPF 15)
whenever you go outdoors and try to avoid being in the sun for long periods of time.
Vaginal Dryness
Vaginal dryness is common in women with Sjögren's syndrome. Painful intercourse is the
most common complaint. A vaginal moisturizer helps retain moisture, and a vaginal
lubricant can make intercourse more comfortable. Vaginal moisturizers attract liquid to
the dry tissues and are designed for regular use. Vaginal lubricants should be used only
for intercourse--they don't moisturize. Oil-based lubricants, such as petroleum jelly,
trap moisture and can cause sores and hinder the vagina's natural cleaning process. A
water-soluble lubricant is better.
Regular skin creams and ointments relieve dry skin on the outer surface of the vagina (the
vulva).
Lung Problems
Dry mouth can cause lung problems. For example, aspiration pneumonia can happen when a
person breathes in food instead of swallowing it (dry mouth can keep you from swallowing
food properly), and the food gets stuck in the lungs. Pneumonia can also develop when
bacteria in the mouth migrate into the lungs and cause infection, or when bacteria get
into the lungs and coughing doesn't remove them. (Some people with Sjögren's don't
produce enough mucus in the lungs to remove bacteria, and others are too weak to be able
to cough.) Pneumonia is treated with various antibiotics, depending on the person and the
type of infection. It is important to get treatment for pneumonia to prevent lung abscess
(a hole in the lung caused by severe infection).
People with Sjögren's also tend to have lung problems caused by inflammation, such as
bronchitis (affecting the bronchial tubes), tracheobronchitis (affecting the windpipe and
bronchial tubes), and laryngotracheobronchitis (affecting the voice box, windpipe, and
bronchial tubes). Depending on your condition, the doctor may recommend using a
humidifier, taking medicines to open the bronchial tubes, or taking corticosteroids to
relieve inflammation. Pleurisy is inflammation of the lining of the lungs and is treated
with corticosteroids and nonsteroidal antiinflammatory drugs.
Protect Your Voice
People with Sjögren's 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 gum, or suck on 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.
Kidney Problems
The kidneys filter waste products from the blood and remove them from the body through
urine. The most common kidney problem in people with Sjögren's is interstitial nephritis,
or inflammation of the tissue around the kidney's filters, which can occur even before dry
eyes and dry mouth. Inflammation of the filters themselves, called glomerulonephritis, is
less common. Some people develop renal tubular acidosis, which means they can't get rid of
certain acids through urine. The amount of potassium in their blood drops, causing an
imbalance in blood chemicals that can affect the heart, muscles, and nerves.
Often, doctors do not treat these problems unless they start to affect kidney function or
cause other health problems. However, they keep a close eye on the problem through regular
exams, and will prescribe medicines called alkaline agents to balance blood chemicals when
necessary. Corticosteroids or immunosuppressants are used to treat more severe cases.
Nerve Problems
People with Sjögren's syndrome can have nerve problems. When they do, the problem usually
involves the peripheral nervous system (PNS), which contains the nerves that control
sensation and movement. Involvement of the PNS is increasingly being recognized. Carpal
tunnel syndrome, peripheral neuropathy, and cranial neuropathy are examples of peripheral
nervous system disorders that occur in people with Sjögren's. In carpal tunnel syndrome,
inflamed tissue in the forearm presses against the median nerve, causing pain, numbness,
tingling, and sometimes muscle weakness in the thumb and index and middle fingers. In
peripheral neuropathy, an immune attack damages nerves in the legs or arms, causing the
same symptoms there. (Sometimes nerves are damaged because inflamed blood vessels cut off
their blood supply.) In cranial neuropathy, nerve damage causes face pain; loss of feeling
in the face, tongue, eyes, ears, or throat; and loss of taste and smell.
Nerve problems are treated with medicines to control pain and, if necessary, with steroids
or other drugs to control inflammation.
Digestive Problems
Inflammation in the esophagus, stomach, pancreas, and liver can cause problems like
painful swallowing, heartburn, abdominal pain and swelling, loss of appetite, diarrhea,
and weight loss. It can also cause hepatitis (inflammation of the liver) and cirrhosis
(hardening of the liver). Sjögren's is closely linked to a liver disease called primary
biliary cirrhosis (PBC), which causes itching, fatigue, and, eventually, cirrhosis. Many
patients with PBC have Sjögren's.
Treatment varies, depending on the problem, but may include pain medicine,
anti-inflammatory drugs, steroids, and immunosuppressants.
Connective Tissue Disorders
Connective tissue is the framework of the body that supports organs and tissues. Examples
are joints, muscles, bones, skin, blood vessel walls, and the lining of internal organs.
Many connective tissue disorders are autoimmune diseases, and several are common among
people with Sjögren's:
*Polymyositis is 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. The disease is treated with corticosteroids and
immunosuppressants.
*In Raynaud's phenomenon, blood vessels in the hands, arms, feet, and legs constrict
(narrow) when exposed to cold. The result is pain, tingling, and numbness. When vessels
constrict, fingers turn white. Shortly after that, they turn blue because of blood that
remained in the tissue pools. When new blood rushes in, the fingers turn red. The problem
is treated with medicines that dilate blood vessels. Raynaud's phenomenon usually occurs
before dryness of the eyes or mouth.
*Rheumatoid arthritis (RA) is severe inflammation of the joints that can eventually deform
the surrounding bones (fingers, hands, knees, etc.). RA can also damage muscles, blood
vessels, and major organs. Treatment depends on the severity of the pain and swelling and
which body parts are involved. It may include physical therapy, aspirin, rest,
nonsteroidal anti-inflammatory agents, steroids, or immunosuppressants.
*Scleroderma causes the body to accumulate too much collagen, a protein commonly found in
the skin. The result is thick, tight skin and damage to muscles, joints, and internal
organs such as the esophagus, intestines, lungs, heart, kidneys, and blood vessels.
Treatment is aimed at relieving pain and includes drugs, skin softeners, and physical
therapy.
*Systemic lupus erythematosus (SLE) causes joint and muscle pain, weakness, skin rashes,
and, in more severe cases, heart, lung, kidney, and nervous system problems. As with RA,
treatment for SLE depends on the symptoms and may include aspirin, rest, steroids, and
anti-inflammatory and other drugs, as well as dialysis and high blood pressure medicine.
*Vasculitis is an inflammation of the blood vessels, which then become scarred and too
narrow for blood to get through to reach the organs. In people with Sjögren's, vasculitis
tends to occur in those who also have Raynaud's phenomenon and lung and liver problems.
*Autoimmune thyroid disorders are common with Sjögren's. They can appear as either the
overactive thyroid of Graves' disease or the underactive thyroid of Hashimoto's. Nearly
half of the people with autoimmune thyroid disorder also have Sjögren's, and many people
with Sjögren's show evidence of thyroid disease.
Does Sjögren's Syndrome Cause Lymphoma?
About 5 percent of people with Sjögren's develop cancer of the lymph nodes, or lymphoma.
The most common symptom of lymphoma is a painless swelling of the lymph nodes in the neck,
underarm, or groin. In Sjögren's syndrome, when lymphoma develops it often involves the
salivary glands. Persistent enlargement of the salivary glands should be investigated
further. Other symptoms may include the following:
*Unexplained fever
*Night sweats
*Constant fatigue
*Unexplained weight loss
*Itchy skin
*Reddened patches on the skin
These symptoms are not sure signs of lymphoma. They may be caused by other, less serious
conditions, such as the flu or an infection. If you have these symptoms, see a doctor so
that any illness can be diagnosed and treated as early as possible.
If you're worried that you might develop lymphoma, talk to your doctor to learn more about
the disease, 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
*Antihistamines
Decongestants
*Diuretics
*Some antidiarrhea drugs
*Some antipsychotic drugs
*Tranquilizers
*Some blood pressure medicines
*Antidepressants
What Research Is Being Done 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. As they get a
better understanding of the genes involved and which environmental factors trigger disease
and how, they'll be able to develop more effective treatments. For example, gene therapy
studies suggest that we may someday be able to insert molecules into salivary glands that
will control inflammation and prevent their destruction. Other research focuses on how the
immune and hormonal systems work in people who have Sjögren's and on the natural history
of the disease (learning how it affects people by following those who have it).
Researchers are also looking into the use of the salivary stimulant pilocarpine for dry
eyes. Other researchers are testing immune modulating drugs to treat the glandular
inflammation. A drug called cevimeline has recently been approved for treating dry mouth.
Work on developing an artificial salivary gland is in progress.
The National Institute of Dental and Craniofacial Research is conducting several studies
on Sjögren's syndrome designed to help scientists better understand, manage, and treat
the disease. Some focus on the disease's natural history, while others test potential new
treatments. Talk to your doctor if you'd like more information about these clinical
trials.
Where Can People Find More Information About Sjögren's Syndrome?
The following organizations have information relevant to Sjögren's syndrome:
Professional Groups
* American Academy of Dermatology
P.O. Box 4014
Schaumburg, IL 60168-4014
Phone: 847-330-0230 or 888-462-3376 (free of charge)
www.aad.org
* American Academy of Ophthalmology
P.O. Box 7424
San Francisco, CA 94120
Phone: 415-561-8500
Fax: 415-561-8567
www.eyenet.org
* American Association for Dental Research
1619 Duke Street
Alexandria, VA 22314
Phone: 703-548-0066
Fax: 703-548-1883
www.iadr.com
* American College of Rheumatology
1800 Century Place, Suite 250
Atlanta, GA 30345
Phone: 404-633-3777
Fax: 404-633-1870
E-mail: acr@rheumatology.org
www.rheumatology.org
* American Dental Association
Department of Public Information and Education
211 East Chicago Avenue
Chicago, IL 60611
Phone: 312-440-2500
Fax: 312-440-2800
E-mail: publicinfo@ada.org
www.ada.org
Government Agencies
* National Eye Institute
National Institutes of Health
2020 Vision Place
Bethesda, MD 20892-3655
Phone: 301-496-5248
www.nei.nih.gov
* National Institute of Allergy and Infectious Diseases
National Institutes of Health
Building 31, Room 7A-50
31 Center Drive, MSC 2520
Bethesda, MD 20892
Phone: 301-496-5717
Fax: 301-402-0120
www.niaid.nih.gov
* National Institute of Arthritis and Musculoskeletal and Skin Diseases Information
Clearinghouse
National Institutes of Health
1 AMS Circle
Bethesda, MD 20892-3675
Phone: 301-495-4484 or
877-22-NIAMS (226-4267) (free of charge)
TTY: 301-565-2966
Fax: 301-718-6366
www.niams.nih.gov
* National Institute of Dental and Craniofacial Research
National Institutes of Health
45 Center Drive, MSC 6400
Building 45, Room 4AS-25
Bethesda, MD 20892-6400
Phone: 301-496-4261
E-mail: nidrinfo@od31.nidr.nih.gov
www.nidcr.nih.gov
* National Institute of Dental and Craniofacial Research
National Institutes of Health
Sjögren's Syndrome Clinic
10 Center Drive, MSC 1190
Building 10, Room 1N113
Bethesda, MD 20892-1190
Phone: 301-435-8528
* National Institute of Neurological Disorders and Stroke
National Institutes of Health
Office of Communications and Public Liaison
P.O. Box 5801
Bethesda, MD 20824
Phone: 800-352-9424 (free of charge)
www.ninds.nih.gov
Consumer and Patient Groups
* American Autoimmune Related Diseases Association
22100 Gratiot Avenue
Eastpointe
E. Detroit, MI 48021-2227
Phone: 586-776-3900
Phone: 800-598-4668 (toll-free)
Fax: 586-776-3903
E-mail: aarda@aarda.org
www.aarda.org
* Arthritis Foundation
1330 West Peachtree Street
Atlanta, GA 30309
Phone: 800-283-7800 (free of charge) or
call your local chapter (listed in the telephone directory)
www.arthritis.org
* Lupus Foundation of America, Inc.
2000 L Street, N.W., Suite 710
Washington, DC 20036
Phone: 202-349-1155
Toll-Free: (800)558-0121
Fax: 202-349-1156
E-mail: lupusinfo@lupus.org
www.lupus.org
* Myositis Foundation of America
755 Cantrell Avenue, Suite C
Harrisonberg, VA 22801
Phone: 540-433-7686
Fax: 540-432-0206
E-mail: maa@myositis.org
www.myositis.org
* National Organization for Rare Disorders, Inc.
P.O. Box 1968
Danbury, CT 06813-1968
Phone: 203-744-0100
or toll free: 800-999-6673
E-mail: orphan@rarediseases.org
www.rarediseases.org
* Scleroderma Foundation
12 Kent Way, Suite 101
Byfield, MA 01922
Help Line: 800-722-HOPE (722-4673) (free of charge)
Phone: 978-750-4499
Fax: 978-463-5809
E-mail: sfinfo@scleroderma.org
www.scleroderma.org
* Scleroderma Research Foundation
2320 Bath Street, Suite 315
Santa Barbara, CA 93105
Phone: 805-563-9133 or
800-441-CURE (411-2873) (free of charge)
Fax: 805-563-2402
E-mail: srfcure@srfcure.org
www.srfcure.org
*
Sjögren's Syndrome Foundation
8120 Woodmont Avenue, Suite 530
Bethesda, MD 20814-1437
Phone: 301-718-0300
Fax: 301-718-0322
E-mail: ssf@sjogrens.org
www.sjogrens.org
This booklet is not copyrighted. Readers are encouraged to duplicate and distribute as
many copies as needed.
Additional copies of this booklet are available from
NIAMS/National Institutes of Health
1 AMS Circle
Bethesda, MD 20892-3675
Acknowledgments
The NIAMS gratefully acknowledges the assistance of the following individuals in the
review of this booklet: Ronald Wilder, M.D., Ph.D., and Alan Moshell, M.D., of the NIAMS;
Kim B. Yancy, M.D., of the National Cancer Institute; Philip C. Fox, D.D.S., of Amarillo
Biosciences, Cabin John, Maryland; Haralampos Moutsopoulos, M.D., of the National
University Medical School, Athens, Greece; Elaine Alexander, M.D., Ph.D., of Arena
Pharmaceuticals, San Diego, California; J. Daniel Nelson, M.D., of Health Partners Medical
Group and Clinics, St. Paul, Minnesota; David A. Sullivan, Ph.D., of Schepens Eye Research
Institute and Harvard Medical School, Boston, Massachusetts; Michael A. Lemp, M.D., of
Georgetown and George Washington Universities, Washington, D.C.; Jeffrey W. Wilson, M.D.,
M.B.A., of Lynchburg Rheumatology Clinic, Lynchburg, Virginia; Stuart S. Kassan, M.D., of
the University of Colorado Health Sciences Center, Denver, Colorado; and Katherine Morland
Hammitt of the Sjögren's Syndrome Foundation, Jericho, New York. This booklet was written
by Cheri Clark.
The mission of the National Institute of Arthritis and Musculoskeletal and Skin Diseases
(NIAMS), a part of the 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 the progress of research in these diseases. The National
Institute of Arthritis and Musculoskeletal and Skin Diseases 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 Web site at www.niams.nih.gov/.
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