See also
Autoimmune
Diseases: Overview
What is systemic lupus erythematosus
(SLE) or lupus?
SLE,
usually referred to as lupus, is an autoimmune disease. Autoimmune
diseases are illnesses in which the immune system becomes overactive
and attacks healthy body tissue. This tendency for the immune
system to become overactive seems to run in families. Other factors,
such as exposure to infections or other environmental triggers,
are also thought to be involved. Lupus affects many more women
than men, and black women more than white women.
Lupus
can affect the joints, skin, kidneys, heart, lungs, blood vessels,
and brain, causing inflammation and damage. For most people, lupus
is a mild disease affecting only a few organs. For others, it
can be disabling and cause serious and even life-threatening problems.
One in five people with the disease are disabled, most commonly
from fatigue and joint and muscle pain. Fifteen to 20 percent
of all cases of lupus result in death, often from kidney disease,
infection, and cardiovascular disease.
Currently,
there is no cure for lupus. However, with early diagnosis and
treatment, symptoms can usually be managed. Most people with the
disease can lead active, healthy lives.
Who has lupus?
Surveys
have shown that lupus affects up to 2 million people in the United
States. About 9 out of 10 people who have lupus are women. Lupus
is three times more common in black women than in white women.
It is also more common in women of Hispanic, Asian, and Native
American descent. Researchers are trying to learn why these women
are more likely to get lupus.
The
disease often starts between the ages of 15 and 44. In some people,
lupus becomes active after exposure to sunlight, infections, or
certain medicines.
What are the different kinds of
lupus?
There
are several forms of lupus:
Systemic
lupus erythematosus (SLE) is the form of the disease that most
people are referring to when they say "lupus." SLE can
affect many parts of the body including joints, skin, kidney,
lungs, heart and brain. Its symptoms can range from mild to serious.
Although SLE usually develops in people between the ages of 15
and 44 years, it can occur in childhood or later in life as well.
Discoid
lupus erythematosus (DLE) mainly affects the skin. It causes a
red, raised rash on the face, scalp, or other parts of the body.
The rash may become thick and scaly and may last for days or years.
A small percentage of people with DLE later develop SLE.
Drug-induced
lupus is a rare reaction to some prescription medicines. It resembles
SLE, but is less serious. Symptoms go away when the drug is stopped.
Neonatal
lupus can affect some newborn babies of women with SLE or certain
other immune system disorders. Babies with neonatal lupus may
have a serious heart defect. Other affected babies may have a
skin rash, liver problems, or low blood counts. Neonatal lupus
is very rare, and most infants of mothers with SLE are healthy.
What are the
signs of lupus?
The
signs of lupus vary and there are usually periods of both illness
called and wellness (remission). Some people have just a few signs
of the disease while others have more. Many people with lupus
look healthy. Lupus may be hard to diagnose and is often mistaken
for other diseases. For this reason, lupus has often been called
the "great imitator."
The
following are some common signs and symptoms of lupus:
Extreme
fatigue
Painful
or swollen joints (arthritis)
Unexplained
fever
"Butterfly"
rash across the nose and cheeks that is typical of lupus
Skin
rashes on other parts of the body
Chest
pain or pleurisy (inflammation of the pleura, the membrane that
covers the lungs)
Unusual
loss of hair
Pale
or purple fingers from cold or stress
Sensitivity
to the sun
Low
red blood-cell count
Seizures
Mouth
or nose ulcers
These
signs are more important when they occur together. Some people
also experience headaches, dizziness, or depression. Some women
have repeated miscarriages. New symptoms may continue to appear
years after the initial diagnosis, and different symptoms can
occur at different times.
What causes
lupus?
Lupus is a complex disease whose cause is unknown. It is likely
that there is no single cause but rather a combination of genetic,
environmental, and possibly hormonal factors that work together
to cause the disease. The exact cause may differ from one person
to another. No specific "lupus gene" has been identified.
Instead, it appears that several inherited genes may make a person
more susceptible to the disease.
Does sunlight cause lupus?
Being
out in the sunlight can trigger signs and symptoms of lupus. Photosensitivity
is an abnormal reaction to the ultraviolet (UV) rays of the sun.
About a third of persons with lupus are photosensitive. In these
persons, sun exposure can cause or worsen a rash, and can sometimes
cause other symptoms. People with lupus should avoid direct, prolonged
exposure to the sun.
If
you are sensitive to the sun, you should:
Frequently
apply a sunscreen with a Sun Protection Factor (SPF) of at least
15
Avoid
unprotected exposure between 10 a.m. and 4 p.m.
Wear
protective clothing, such as wide-brimmed hats and long sleeves.
Keep
in mind that UV rays are reflected off water and snow. Also, glass
(such as car windows) does not provide total protection from UV
rays.
Fluorescent
and halogen indoor lights can emit UV rays that can aggravate
lupus. If you work in an office lit by these kinds of lights,
there are plastic devices that can block UV emissions from them.
Why is lupus
more common in black women than in white women?
We
do not know why the disease is more common in black women. However,
researchers are studying why minorities are more inclined to get
lupus, what causes it to start, and why it is mild in some and
severe in others. Other researchers are studying why the signs
of lupus differ between black women and white women.
How is lupus diagnosed?
Early
diagnosis and treatment are needed to improve health and reduce
tissue damage. Diagnosing lupus can be difficult, however. It
may take months or even years for doctors to piece together the
symptoms to make an accurate diagnosis. Giving the doctor a complete,
accurate medical history is very important. This information,
along with a physical exam and the results of tests, helps the
doctor rule out other diseases that may mimic lupus. Reaching
a diagnosis may take time and occur gradually as new symptoms
appear.
No
single test can determine whether a person has lupus. The antinuclear
antibody (ANA) test is a commonly used test. Most people with
lupus test positive for ANA; however, there are a number of other
causes of a positive ANA. In addition, there are blood tests for
individual types of antibodies that are more specific to people
with lupus, although not all people with lupus test positive for
these and not all people with these antibodies have lupus.
Other
tests are used to monitor the progress of the disease once it
has been diagnosed. A complete blood count, urinalysis, blood
chemistries, and erythrocyte sedimentation rate (ESR) test can
provide valuable information. Another common test measures the
blood level of a group of substances called complement. People
with lupus often have increased ESRs and low complement levels,
especially during flares of the disease.
How is lupus treated?
Because
the signs of lupus often differ from one person to another, treatment
varies. There is no known cure today for lupus. However, in many
cases, symptoms of the disease can be relieved. The good news
is that with the correct medicine and by taking care of themselves,
most persons with lupus can hold jobs, have children, and lead
full lives.
Once
lupus has been diagnosed, the doctor will develop a treatment
plan. The plan is based on the person's age, gender, health, symptoms,
and lifestyle. Tailored to the person's needs, this plan may change
over time. Treatment is used to prevent flares, to effectively
treat them when they do occur, and to reduce complications.
Treatment
may include:
Aspirin
or similar medicine to treat the painful, swollen joints and the
fever
Creams
to treat the rash
Stronger
medicines for more serious problems, based on the person's individual
symptoms and needs
Physical
and emotional rest
Protection
from direct sunlight
A
healthful diet and exercise
Prompt
treatment of infections
Avoidance
of known allergens and aggravating factors
Drugs
used in treating lupus include:
Nonsteroidal
anti-inflammatory drugs (NSAIDs). NSAIDs are often used to
reduce pain and inflammation in persons who have mild SLE. There
are many different types of NSAIDs, both prescription drugs and
over-the-counter drugs. They include aspirin, ibuprofen, naproxen,
and other medicines. Common side effects of NSAIDs can include
stomach upset, heartburn, diarrhea, and fluid retention. Some
persons with lupus also develop liver and kidney inflammation
while taking NSAIDs, making it especially important to stay in
close contact with your health care provider while taking these
medications.
Antimalarial
drugs. These drugs were originally used to treat malaria,
but doctors have found that they also are useful for lupus. They
may work by suppressing parts of the immune response. They may
be used alone or in combination with other drugs to treat fatigue,
joint pain, skin rashes, and inflammation of the lungs. Two common
antimalarials used to treat lupus are hydroxychloroquine (Plaquenil)
and chloroquine (Aralen). Side effects of antimalarials can include
stomach upset, nausea, vomiting, loss of appetitie and, in rare
cases, damage to the retina of the eye.
Corticosteroid
hormones. These are powerful drugs that reduce inflammation
in various tissues of the body. They can be given by mouth, in
creams applied to the skin, or by injection. Prednisone is a corticosteroid
that is often used to treat lupus. These drugs have various side
effects, so doctors try to use the lowest dose possible. Short-term
side effects of corticosteroids include swelling, increased appetite,
weight gain, and emotional ups and downs. These side effects generally
stop when the drug is stopped. Long-term side effects of corticosteroids
can include stretch marks on the skin, excessive hair growth,
weakened or damaged bones, high blood pressure, damage to the
arteries, high blood sugar, infections, and cataracts.
People
with lupus who are using corticosteroids should talk to their
doctors about taking calcium supplements and vitamin D or other
drugs to reduce the risk of osteoporosis (weakened, fragile bones).
Immunosuppressive
agents. These drugs suppress the immune system. Examples are
azathioprine (Imuran) and cyclophosphamide (Cytoxan). They are
used in serious cases of lupus, such as in cases when major organs
like the kidneys are affected. These drugs can cause serious side
effects inlcuding nausea, vomiting, hair loss, bladder problems,
decreased fertility, and increased risk of cancer and infection.
New
drug treatments are being tested, including hormonal treatments.
Working closely with the doctor helps ensure that treatments for
lupus are as successful as possible. Because some treatments may
cause harmful side effects, it is important to promptly report
any new symptoms to the doctor.
It
is also important not to stop or change treatments without talking
to the doctor first. With early diagnosis and the correct treatment
and medication, most people with lupus can maintain an overall
high quality of life.
I am pregnant. Will my lupus affect
my baby?
Although
a lupus pregnancy is considered high risk, most women with lupus
carry their babies safely to the end of their pregnancy. Women
with lupus are more likely to have a miscarriage than other women.
Although experts disagree on the exact numbers, approximately
20 to 25 percent of lupus pregnancies end in miscarriage, compared
to 10 to 15 percent of pregnancies in women without the disease.
About one in four babies of women with lupus are born prematurely.
Pregnancy
counseling and planning before pregnancy are important. Ideally,
a woman should have no signs or symptoms of lupus and be taking
no medicines for at least 6 months before she becomes pregnant.
Some
women may experience a mild to moderate flare during or after
their pregnancy; others do not. Regular care and good nutrition
during pregnancy are essential.
How can I cope with the stress
of having lupus?
Staying
healthy takes extra effort and care for people with lupus. You
must cope with the stress of having a chronic disorder. Some approaches
that may help include:
Exercise
Relaxation
techniques such as meditation
Setting
priorities for spending time and energy
Educating
yourself about the disease
Having
a good support system.
A
support system may include family, friends, health care providers,
community organizations, and organized support groups. Participating
in a support group can provide emotional help, boost self-esteem
and morale, and help develop or improve coping skills. It is important
to follow up with your health care provider(s) on a regular basis,
even when your lupus is quiet and all seems well.
What research is being done on
lupus?
Promising areas of research on treatment for lupus include biologic
agents; newer, more selective drugs that suppress the immune system;
and bone transplants to correct immune abnormalities.
For more information...
For more information on lupus, call the National Women's Health
Information Center (NWHIC) at 800-994-WOMAN or contact the following
organizations.
National Library of Medicine's MEDLINEplus
Phone Number(s): (888) 346-3656
Internet Address: http://www.nlm.nih.gov/medlineplus/lupus.html
National Institute of Arthritis and Musculoskeletal
and Skin Diseases (NIAMS)
Phone Number(s): (301) 496-4484
Internet Address: http://www.niams.nih.gov
National Institute of Allergy and Infectious Diseases
Phone Number(s): (301) 480-2814
Internet Address: http://www.niaid.nih.gov/publications/autoimmune/default.htm
American Autoimmune Related Diseases Association,
Inc.
Phone Number(s): (810) 776-3900 or (800) 598-4668 Literature Requests
Internet Address: http://www.aarda.org/index.html
Lupus Foundation of America
Phone Number(s): (800) 558-0121
Internet Address: http://www.lupus.org/
American College of Rheumatology
Phone Number(s): (404) 633-3777
Internet Address: www.rheumatology.org
All material contained in the FAQs is free of copyright
restrictions, and may be copied, reproduced, or duplicated without
permission of the Office on Women's Health in the Department of
Health and Human Services; citation of the source is appreciated.