Systemic Lupus Erythematosus (Lupus or SLE)
What is lupus?
Systemic lupus erythematosus (lupus) is a disease that causes your body’s immune system
to attack its own cells and tissues. It causes periods of inflammation to various
parts of the body. It can affect your joints, tendons, kidneys, and skin. It can affect
blood vessels. And it can affect organs such as the heart, lungs, and brain. It can
cause rashes, fatigue, pain, and fever.
Lupus is a chronic disease. It affects each person differently. The effects of the
illness range from mild to severe. Symptoms of lupus may come and go. These are sometimes
known as flare-ups, periods of remission, and relapse. Lupus has no cure, but medicines
can help symptoms. And you can help manage lupus by living a healthy lifestyle and
working with your healthcare provider. In children, lupus often attacks the kidneys.
This can lead to kidney damage and kidney failure. In some cases, lupus can be fatal.
What causes lupus?
Your body protects itself with the immune system. The immune system makes proteins
called antibodies. These protect against bacteria, viruses, and cancer cells. In some
people, the immune system makes antibodies that attack the body’s own cells. This
leads to inflammation and tissue damage in the body.
Experts think it may be caused by a mix of genes and other factors. The other factors
may include being exposed to viruses. Other factors such as sunlight, stress, or hormones
may be part of the cause of lupus.
Who is at risk for lupus?
Lupus occurs most often in young women in their late teens and adult women younger
than age 45. The female hormone estrogen is linked with lupus. Lupus also affects
more African-Americans, Asian Americans, Hispanics, and American Indians than whites.
Lupus in children occurs most often in ages 15 and older.
What are the symptoms of lupus?
Lupus symptoms can appear in many parts of the body. Symptoms can occur a bit differently
in each person. They may come and go. Some of the common symptoms of lupus are:
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Anemia
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Butterfly-shaped rash on the nose and cheeks of the face (malar rash)
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Fatigue
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Fever
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Hair loss
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Loss of appetite
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Pale, blue, or red fingers triggered by cold, stress, or illness (Raynaud's phenomenon)
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Raised rash on the head, arms, chest, or back (discoid rash)
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Rashes caused by sunlight
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Sores in the mouth or nose
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Swollen glands
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Swollen or painful joints (arthritis)
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Weight loss
The symptoms of lupus can look like other health problems. Make sure to see your healthcare
provider for a diagnosis.
How is lupus diagnosed?
Lupus is hard to diagnose. This is because it has many possible symptoms that could
have other causes. And the symptoms can occur slowly over time.
To diagnose lupus, your healthcare provider will ask about your medical history and
your symptoms. Your healthcare provider may suspect you have lupus if you have 4 or
more symptoms and no specific cause. You may have tests to help confirm the diagnosis.
You may have blood tests such as:
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Antibody blood tests. These tests are done to look for certain kinds of antibodies in your blood. The main
test for lupus is the antinuclear antibodies (ANA) test. Most people with lupus will
have a positive ANA test result. However, not everyone with a positive ANA will have
lupus, so other tests are useful to check for other kinds of antibodies.
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Complete blood count (CBC). This test checks for low counts of red blood cells, white blood cells, and platelets.
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Complement test. This test is done to measure the level of complement. This is a group of proteins
in the blood that help destroy foreign substances. Low levels of complement in the
blood are often linked with lupus.
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Erythrocyte sedimentation rate (ESR or sed rate). This test looks at how quickly red blood cells fall to the bottom of a test tube.
When swelling and inflammation are present, the blood’s proteins clump together and
become heavier than normal. They fall and settle faster at the bottom of the test
tube. The faster the blood cells fall, the more severe the inflammation.
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C-reactive protein (CRP). This is protein that is shows up when inflammation is found in the body. ESR and
CRP show similar amounts of inflammation. But in some case, one will be high when
the other is not. This test may be repeated to check your response to medicine.
You may also have other tests such as:
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Biopsies. A biopsy is when tiny pieces of tissue are taken from the body to be checked under
a microscope. To look for signs of lupus, biopsies may be done of the skin and kidneys.
The test looks for damage to these organs.
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X-rays. This test uses a small amount of radiation to create images of organs, bones, and
other tissues.
How is lupus treated?
There is no cure for lupus, but it is treated in many ways. You may work with a rheumatologist.
This is a doctor who specializes in lupus, arthritis, and other related diseases.
You may also work with other kinds of doctors. These include specialists in kidney
disease, blood disorders, immune disorders, and heart problems. You may also meet
with a social worker to help you manage your treatment plan. The goals of treatment
include treating symptoms, preventing flare-ups of lupus, and helping reduce damage
to the body.
Your healthcare provider may give you medicine to help treat symptoms. Medicines can’t
cure lupus, but they can help prevent organ damage or suppress the disease. Your healthcare
provider will prescribe one or more medicines to help you feel better. Be sure to
take them as directed. You may be given medicines such as:
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Nonsteroidal anti-inflammatory drugs (NSAIDS). These can be used to help relieve swelling, pain, and fever.
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Antimalarial medicine. A medicine used to prevent and treat malaria can help ease some lupus symptoms. It
can treat fatigue, rashes, joint pain, and mouth sores. The medicine may also help
prevent blood clots.
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Corticosteroid medicines. These can help people when lupus affects the kidneys, lungs, or heart, or nervous
system.
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Medicines that suppress the immune system. These can help treat severe symptoms of lupus that has attacked organs.
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Other medicines. A type of medicine called a biologic may be an option. Clinical trials are also being
done to test other medicines that may help people with lupus.
Talk with your healthcare providers about the risks, benefits, and possible side effects
of all medicines.
Lupus can also be managed by keeping a healthy lifestyle. Here are ways to take care
of yourself:
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Get enough sleep. Aim for 8 to 10 hours a night. Take naps and breaks during the day.
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Eat a healthy diet.
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Maintain a healthy weight.
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Exercise a few times a week, at least.
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Learn ways to reduce or manage stress.
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Stay out of the sun as much as you can. Wear clothes that cover your skin. Use sunscreen
with an SPF 45 or higher.
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Treat infections right away.
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Don’t smoke or use illicit drugs.
Work with your healthcare provider to manage your lupus. Get regular checkups and
tests.
Children with lupus should not receive vaccines with live viruses. This includes chickenpox,
measles-mumps-rubella (MMR), and oral polio vaccines. Talk with your child’s healthcare
provider about all vaccines. They should receive all other vaccines, including a yearly
flu vaccine.
What are the complications of lupus?
Lupus can range from a mild disease to a life-threatening disease that damages organs.
It may affect your daily activities. Possible complications can include:
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Swelling in legs and ankles (edema)
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Inflammation of tissue around the lungs that causes chest pain when breathing (pleurisy)
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Inflammation of the lining of the heart (pericarditis)
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Fluid around the lungs, heart, or other organs
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Seizures
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Kidney failure
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Miscarriage
If you are a woman of child-bearing age, talk with your healthcare provider about
the risks of pregnancy and lupus. Lupus symptoms can flare up during pregnancy. Pregnancy
with lupus is high risk, so you will need extra care from your healthcare team. You
may need to see your healthcare provider more often.
Living with lupus
Lupus can be a life-changing diagnosis. Lupus symptoms often come and go over time.
It is important to know the warning signs that a relapse, or flare-up, is going to
happen. Each person may have different warning signs. They may include fatigue, pain,
rash, or fever. Knowing your warning signs can help you work with your healthcare
provider to adjust your medicine. It is also important to get 8 to 10 hours of sleep
each night, stay current on your vaccines, and keep a healthy lifestyle.
When should I call my healthcare provider?
If your symptoms get worse or you have new symptoms, let your healthcare provider
know.
Key points about lupus
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Lupus is a disease that causes episodes of inflammation and damage to many parts of
the body, including skin and organs.
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It is caused by both genes and environmental factors.
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Symptoms include a rash, fever, joint inflammation, and sensitivity to the sun.
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Lupus can range from a mild disease to a life-threatening disease.
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There is no cure for lupus, but medicines and lifestyle changes can help you manage
the disease.
Next steps
Tips to help you get the most from a visit to your healthcare provider:
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Know the reason for your visit and what you want to happen.
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Before your visit, write down questions you want answered.
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Bring someone with you to help you ask questions and remember what your provider tells
you.
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At the visit, write down the name of a new diagnosis, and any new medicines, treatments,
or tests. Also write down any new instructions your provider gives you.
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Know why a new medicine or treatment is prescribed, and how it will help you. Also
know what the side effects are.
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Ask if your condition can be treated in other ways.
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Know why a test or procedure is recommended and what the results could mean.
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Know what to expect if you do not take the medicine or have the test or procedure.
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If you have a follow-up appointment, write down the date, time, and purpose for that
visit.
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Know how you can contact your provider if you have questions.
Online Medical Reviewers:
- Berry, Judith, PhD, APRN
- David M. Siegel, M.D., M.P.H.
- Horowitz, Diane, MD