Health Topics
Publication Date: August 2001
The Many Shades of Lupus
If you have lupus, you probably have many questions. Lupus
isn't a simple disease with an easy answer. You can't take a pill and
make it go away. The people you live with and work with may have trouble
understanding that you're sick. Lupus doesn't have a clear set of signs
that people can see. You may know that something's wrong, even though it
may take a while to be diagnosed.
Lupus has many shades. It can affect people of different
races, ethnicities, and ages, both men and women. It can look like
different diseases. It's different for every person who has it.
The good news is that you can get help and fight lupus.
Learning about it is the first step. Ask questions. Talk to your doctor,
family, and friends. People who look for answers are more likely to find
them. This booklet can help you get started.
What Is Lupus?
Lupus is an autoimmune (AW-toe-ih-MYOON) disease. Your
body's immune system is like an army with hundreds of soldiers. The
immune system's job is to fight foreign substances in the body, like
germs and viruses. But in autoimmune diseases, the immune system is out
of control. It attacks healthy tissues, not germs.
You can't catch lupus from another person. It isn't
cancer, and it isn't related to AIDS.
Lupus is a disease that can affect many parts of the body.
Everyone reacts differently. One person with lupus may have swollen
knees and fever. Another person may be tired all the time or have kidney
trouble. Someone else may have rashes. Lupus can involve the joints, the
skin, the kidneys, the lungs, the heart and/or the brain. If you have
lupus, it may affect two or three parts of your body. Usually, one
person doesn't have all the possible symptoms.
There are three main types of lupus:
- Systemic lupus erythematosus (eh-RITH-eh-muh-TOE-sus) is
the most common form. It's sometimes called SLE, or just lupus. The
word "systemic" means that the disease can involve many parts of the
body such as the heart, lungs, kidneys, and brain. SLE symptoms can be
mild or serious.
- Discoid lupus erythematosus mainly affects the skin. A red
rash may appear, or the skin on the face, scalp, or elsewhere may
change color.
- Drug-induced lupus is triggered by a few medicines. It's
like SLE, but symptoms are usually milder. Most of the time, the
disease goes away when the medicine is stopped. More men develop
drug-induced lupus because the drugs that cause it, hydralazine and
procainamide, are used to treat heart conditions that are more common
in men.
What Are the Signs and Symptoms of
Lupus?
Lupus may be hard to diagnose. It's often mistaken for
other diseases. For this reason, lupus has been called the "great
imitator." The signs of lupus differ from person to person. Some people
have just a few signs; others have more.
Common signs of lupus are:
- Red rash or color change on the face, often in the shape of a
butterfly across the nose and cheeks
- Painful or swollen joints
- Unexplained fever
- Chest pain with deep breathing
- Swollen glands
- Extreme fatigue (feeling tired all the time)
- Unusual hair loss (mainly on the scalp)
- Pale or purple fingers or toes from cold or stress
- Sensitivity to the sun
- Low blood count
- Depression, trouble thinking, and/or memory problems
Other signs are mouth sores, unexplained seizures
(convulsions), "seeing things" (hallucinations), repeated miscarriages,
and unexplained kidney problems.
What Is a Flare?
When symptoms appear, it's called a "flare." These signs
may come and go. You may have swelling and rashes one week and no
symptoms at all the next. You may find that your symptoms flare after
you've been out in the sun or after a hard day at work.
Even if you take medicine for lupus, you may find that
there are times when the symptoms become worse. Learning to recognize
that a flare is coming can help you take steps to cope with it. Many
people feel very tired or have pain, a rash, a fever, stomach
discomfort, headache, or dizziness just before a flare. Steps to prevent
flares, such as limiting the time you spend in the sun and getting
enough rest and quiet, can also be helpful.
Preventing a Flare
- Learn to recognize that a flare is coming.
- Talk with your doctor.
- Try to set realistic goals and priorities.
- Limit the time you spend in the sun.
- Maintain a healthy diet.
- Develop coping skills to help limit stress.
- Get enough rest and quiet.
- Moderately exercise when possible.
- Develop a support system by surrounding yourself with people
you trust and feel comfortable with (family, friends, etc.).
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What Causes Lupus?
We don't know what causes lupus. There is no cure, but in
most cases lupus can be managed. Lupus sometimes seems to run in
families, which suggests the disease may be hereditary. Having the genes
isn't the whole story, though. The environment, sunlight, stress, and
certain medicines may trigger symptoms in some people. Other people who
have similar genetic backgrounds may not get signs or symptoms of the
disease. Researchers are trying to find out why.
Who Gets Lupus?
Anyone can get lupus. But 9 out of 10 people who have it
are women. African American women are three times more likely to get
lupus than white women. It's also more common in Hispanic/Latino, Asian,
and American Indian women.
Both African Americans and Hispanics/Latinos tend to
develop lupus at a younger age and have more symptoms at diagnosis
(including kidney problems).
They also tend to have more severe disease than whites.
For example, African American patients have more seizures and strokes,
while Hispanic/Latino patients have more heart problems. We don't
understand why some people seem to have more problems with lupus than
others.
Lupus is most common in women between the ages of 15 and
44. These are roughly the years when most women are able to have babies.
Scientists think a woman's hormones may have something to do with
getting lupus. But it's important to remember that men and older people
can get it, too.
It's less common for children under age 15 to have lupus.
One exception is babies born to women with lupus. These children may
have heart, liver, or skin problems caused by lupus. With good care,
most women with lupus can have a normal pregnancy and a healthy
baby.
Diagnosis: How Do You Find Out If You Have
Lupus?
- Medical history--Telling a doctor about your symptoms and
other problems you have had can help him or her understand your
situation. Your history can provide clues to your disease. Use
the checklist at the end of
this booklet to keep track of your symptoms. Share this checklist
with your doctor. Ask your family or friends to help you with
the checklist or come up with questions for your doctor.
- Complete physical exam--The doctor will look for rashes and
other signs that something is wrong.
- Laboratory testing of blood and urine samples--Blood and
urine samples often show if your immune system is
overactive.
- Skin or kidney biopsy--In a biopsy, tissue that is removed
by a minor surgical procedure is examined under a microscope.
Skin or kidney tissue examined in this way can show signs of an
autoimmune disease.
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What Will the Doctor Do?
Go see a doctor. He or she will talk to you and take a
history of your health problems. Many people have lupus for a long time
before they find out they have it. It's important that you tell the
doctor or nurse about your symptoms. This information, along with a
physical examination and the results of laboratory tests, helps the
doctor decide whether you have lupus or something else.
A rheumatologist (ROOM-uh-TALL-uh-jist) is a doctor who
specializes in treating diseases that affect the joints and muscles,
like lupus. You may want to ask your regular doctor for a referral to a
rheumatologist.
In some cases, a dermatologist, a doctor who specializes
in treating diseases that affect the skin, may be involved in diagnosis
and treatment. No single test can show that you have lupus. Your
doctor may have to run several tests and study your medical history. It
may take time for the doctor to diagnose lupus.
Will I Get Medicine?
Remember that each person has different symptoms.
Treatment depends on the symptoms. The doctor may give you aspirin or a
similar medicine to treat swollen joints and fever. Creams may be
prescribed for a rash. For more serious problems, stronger medicines
such as antimalaria drugs, corticosteroids, and chemotherapy drugs are
used. Your doctor will choose a treatment based on your symptoms and
needs.
Always tell your doctor if you have problems with your
medicines. Let your doctor know if you take herbal or vitamin
supplements. Your medicines may not mix well with these supplements.
You and your doctor can work together to find the best way to treat all
of your symptoms.
How Can I Cope With Lupus?
You need to find out what works best for you. You may find
that a rheumatologist has the best treatment plan for you. Other health
professionals who can help you deal with different aspects of lupus
include psychologists, occupational therapists, dermatologists, and
dietitians. You might find that doing exercises with a physical
therapist makes you feel better. The important thing is to follow up
with your health care team on a regular basis, even when your lupus is
quiet and all seems well.
Dealing with a long-lasting disease like lupus can be hard
on the emotions. You might think that your friends, family, and
coworkers do not understand how you feel. Sadness and anger are common
reactions.
People with lupus have limited energy and must manage it
wisely. Ask your health care team about ways to cope with fatigue. Most
people feel better if they manage their rest and work and take their
medicine. If you're depressed, medicine and counseling can help.
Also,
- Pay attention to your body. Slow down or stop before you're too
tired.
- Learn to pace yourself. Spread out your work and other activities.
- Don't blame yourself for your fatigue. It's part of the
disease.
- Consider support groups and counseling. They can help you realize
that you're not alone. Group members teach one another how to cope.
- Consider other support from your family as well as faith-based and
other community groups.
It's true that staying healthy is harder when you have
lupus. You need to pay close attention to your body, mind, and spirit.
Having a chronic disease is stressful. People cope with stress
differently. Some approaches that may help are:
- Staying involved in social activities
- Practicing techniques such as meditation and yoga
- Setting priorities for spending time and energy
Exercising is another approach that can help you cope with
lupus. Types of exercise that you can practice include the
following:
- Range-of-motion (for example, stretching) exercise helps
maintain normal joint movement and relieve stiffness. This type of
exercise helps maintain or increase flexibility.
- Strengthening (for example, weight-lifting) exercises help
keep or increase muscle strength. Strong muscles help support and
protect joints affected by lupus.
- Aerobic or endurance (for example, brisk walking or
jogging) exercises improve cardiovascular fitness, help control
weight, and improve overall function.
People with chronic diseases like lupus should check with
their health care professional before starting an exercise program.
Learning about lupus may also help. People who are
well-informed and take part in planning their own care report less pain.
They also may make fewer visits to the doctor, have more
self-confidence, and remain more active.
Women who want to start a family should work closely with
their health care team; for example, doctors, physical therapists, and
nurses. Your obstetrician and your lupus doctor should work together to
find the best treatment plan for you.
Hope Through Research
Scientists are working to find out what causes lupus and
how it can best be treated. Here are some of the questions they are
trying to answer:
- Who gets lupus and why?
- Why are women more likely to get lupus than men?
- Why are there more cases of lupus among certain racial and ethnic
groups?
- What goes wrong in the immune system and why?
- What genes play a role in lupus?
- How can we fix an immune system that isn't working well?
- How can lupus symptoms best be treated?
The National Institutes of Health (NIH) supports research
on health and disease. The National Institute of Arthritis and
Musculoskeletal and Skin Diseases (NIAMS) supports research on the
bones, joints, muscles, connective tissue, and skin. These are the parts
of the body that can be affected by lupus. Research supported by NIAMS
is looking at these issues:
- Certain genes make some people more likely to have serious
complications, such as kidney disease. NIAMS researchers have found a
gene linked to a higher risk of lupus kidney disease in African
Americans. Changes in this gene keep the immune system from removing
harmful germ-fighters from the body after they've done their job.
Other genes may also play a role.
- Lupus is more common in women than in men. Researchers are looking
into the role of hormones and other male-female differences.
- One NIAMS project is testing a new drug that scientists hope will
have milder side effects than standard treatments. Another study is
testing a combination of two medicines. One is a standard drug and the
other is a new drug. Scientists hope that the combination will be more
effective and cause fewer side effects.
Where Can People Find More
Information About Lupus?
NIH Information Sources
National Institute of Arthritis and Musculoskeletal and
Skin Diseases
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
The NIAMS, a part of the NIH, leads the Federal Government
research effort in arthritis and other diseases that affect the muscles,
bones, joints, and skin. The NIAMS supports research and research
training throughout the United States, as well as on the NIH campus in
Bethesda, Maryland. The NIAMS Office of Communications and Public
Liaison provides health and research information for the public through
the NIAMS Information Clearinghouse.
Clinical Trials at NIH
Phone: 800-411-1222 (free
of charge)
http://clinicaltrials.gov/
Clinical trials are medical research studies to see
whether new treatments are safe and effective. These studies help
doctors learn how people respond to medicines or other new or improved
treatments. This Web site provides patients, families, and the public
with an easy way to get information about clinical trials. Links to the
people who are recruiting participants for each study are also
provided.
MEDLINEplus
The National Library of
Medicine's Web site for consumer health information
http://www.medlineplus.gov/
Department of Health and Human Services (DHHS)
On-line Resources
The following Web sites can help you find additional
sources of information about lupus:
HealthFinder
The DHHS site for consumer health
information
http://www.healthfinder.gov/
Combined Health Information Database
The NIH
and the Centers for Disease Control and Prevention database of sources
for consumer health information
http://chid.nih.gov/
Other Organizations
American Academy of Dermatology
P.O. Box 4014
Schaumburg, IL 60168-4014
Phone: 847-330-0230 or
888-462-3376 (free of charge)
Fax: 847-330-0050
www.aad.org
This national organization for dermatologists publishes
brochures on skin problems such as acne, as well as those related to
lupus. These brochures can be obtained by calling or writing the
academy; they are also available on the organization's Web site. The
academy can also provide referrals to dermatologists.
American Academy of Orthopaedic Surgeons
P.O. Box 2058
Des Plaines, IL 60017
Phone: 800-824-BONE (2663) (free of charge)
www.aaos.org
The academy provides education and practice management services for orthopaedic surgeons and allied health professionals. It also serves as an advocate for improved patient care and informs the public about the science of orthopaedics. The orthopaedist's scope of practice includes disorders of the body's bones, joints, ligaments, muscles, and tendons. For a single copy of an AAOS brochure, send a self-addressed stamped envelope to the address above or visit the AAOS Web site.
American College of Rheumatology
1800 Century
Place, Suite 250
Atlanta, GA 30345
Phone: 404-633-3777
Fax:
404-633-1870
www.rheumatology.org
This association provides referrals to doctors and health
professionals who treat arthritis and other rheumatic diseases like
lupus. The association also provides educational materials and
guidelines.
American Autoimmune Related Diseases Association
22100 Gratiot Avenue
Eastpointe
East Detroit, MI 48021-2227
Phone: 586-776-3900
Phone: 800-598-4668 (free of charge)
Fax: 586-776-3903
E-mail: aarda@aarda.org
www.aarda.org
The American Autoimmune Related Diseases Association (AARDA) is
the only national nonprofit voluntary health agency dedicated to bringing
a national focus and collaborative effort to the over 100 known autoimmune
diseases through education, awareness, research, and patient services.
By collaborating with the National Coalition of Autoimmune Patient Groups
(NCAPG), AARDA supports legislative advocacy for autoimmune disease
patients. AARDA provides free patient education information, physician
and agency referrals, forums and symposia, and a quarterly newsletter.
Arthritis Foundation
1330 West Peachtree
Street
Atlanta, GA 30309
Phone: 404-872-7100 or
800-283-7800
(free of charge)
or your local chapter listed in the telephone book
www.arthritis.org
The Arthritis Foundation is the major voluntary
organization devoted to supporting research into arthritis and other
rheumatic diseases, like lupus, and providing education and other
services to people with rheumatic diseases. This foundation publishes
free pamphlets on lupus and many other topics. Local chapters provide
many services in the community, such as exercise classes, self-help
courses, and support groups.
Lupus Foundation of America, Inc. (LFA)
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
or your local chapter listed in the telephone book
www.lupus.org
The LFA is the main voluntary organization devoted to
lupus. The LFA assists local chapters in providing services to people
with lupus, works to educate the public about lupus, and supports lupus
research. Through a network of more than 500 branches and support
groups, the chapters provide education through information and referral
services, health fairs, newsletters, publications, and seminars.
Chapters provide support to people with lupus, their families, and
friends through support group meetings, hospital visits, and telephone
help lines.
SLE Foundation
149 Madison Avenue, Suite
205
New York, NY 10016
Phone: 212-685-4118 or 800-74-LUPUS
(745-8787) (free of charge)
www.lupusny.org
The SLE Foundation supplies literature on a variety of
lupus-related issues to anyone who requests it. In addition, the
foundation offers a referral service to knowledgeable lupus specialists.
The foundation produces and distributes a newsletter several times a
year and offers a variety of events and lectures by medical experts.
Symptom Checklist
Print out this page and use it to make notes to take to
your doctor. Put a check mark beside the symptoms you have. Note when
you experienced them.
Symptom |
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Where? |
When did you first notice? |
How often? |
Recent dates? |
Example: rash |
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face and chest |
2 years ago |
Once or twice a month |
9/17, 10/8, 10/23, 11/15 |
Red rash or color change |
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Painful or swollen joints |
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Unexplained fever |
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Chest pain with deep breathing |
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Unusual hair loss |
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Pale or purple fingers or toes |
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Sensitivity to sun |
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Other |
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Do You Have Lupus or a Related
Condition?
You may be able to help scientists
learn more about these conditions.
For information about research projects
near your home, call the
NIAMS (301) 495-4484
You could make a
difference! |
In Appreciation
The NIAMS thanks the following people and organizations
for their contribution to this project:
Arthritis Foundation Metropolitan Washington Chapter,
Lupus Foundation of Greater Washington, Lupus Foundation of America,
Barbara Mittleman, M.D., Clifton A. Poodry, Ph.D., Laura Robbins,
D.S.W., Cheryl Contreras, M.P.I.A., Patricia Fraser, M.D., M.P.H., M.S.,
Lori Harrison Port, M.P.H., and Bobbie Drake-Saucer.
Special thanks go to our focus group participants and
patients with lupus who reviewed this publication and provided valuable
input.
This booklet is provided by the National Institute of
Arthritis and Musculoskeletal and Skin Diseases in cooperation with the
Arthritis Foundation Metropolitan Washington Chapter.
The mission of the National Institute of Arthritis and Musculoskeletal
and Skin Diseases (NIAMS) 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 and research updates can be found on the NIAMS
Web site at http://www.niams.nih.gov/hi/.
This booklet is not copyrighted. You can make copies of it
and give out as many as you want.
For more copies, contact
National Institute of Arthritis and Musculoskeletal
and
Skin Diseases (NIAMS) Information Clearinghouse
National Institutes
of Health (NIH)
1 AMS Circle
Bethesda, MD 20892-3675
NIH Publication No. 01-4958