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Systemic Lupus Erythematosus (Lupus)

Systemic Lupus Erythematosus (Lupus)

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, and skin. It can affect blood vessels. And it can affect organs such as the kidneys, heart, lungs, and brain. It can cause rashes, fatigue, pain, and fever. The heart, lungs, kidneys, and brain are the organs most affected. Severe lupus can cause harm to organs and other serious problems.

Lupus is an ongoing (chronic) disease. Lupus 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 medications can help symptoms. And you can help manage lupus by living a healthy lifestyle and working with your doctor. 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.

Doctors don’t know why this happens. Experts think it may be caused by a mix of genes and other factors. The other factors may include being exposed to the Epstein Barr virus. 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 to age 45. The female hormone estrogen is linked with lupus. Lupus also affects more African-Americans, Asian Americans, Latinos, and American Indians than white Americans. Lupus in children occurs most often from age 15 and up.

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:

  • Fatigue
  • Fever
  • Swollen glands
  • Sores in the mouth or nose
  • Hair loss
  • Butterfly-shaped rash on the nose and cheeks of the face (malar rash)
  • Raised rash on the head, arms, chest, or back (discoid rash)
  • Rashes caused by sunlight
  • Swollen or painful joints (arthritis)
  • Weight loss
  • Pale or blue fingers triggered by cold, stress, or illness (Raynaud's phenomenon)
  • Loss of appetite
  • Anemia

The symptoms of lupus can be like other health conditions. Make sure to see your health care 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 health care provider will ask about your medical history. He or she will ask about your symptoms. Your provider may suspect you have lupus if you have 4 or more symptoms and he or she can find no specific cause. You may have tests to help confirm the diagnosis. You may have blood tests such as:

  • 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. Other tests check for other kinds of antibodies.
  • Complete blood count (CBC).This test checks for low counts of red blood cells, white blood cells, and platelets.
  • 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.
  • 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.
  • 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 medication.

And you may have other tests such as:

  • Urine tests. These are to look for blood or protein in the urine. This can mean your kidneys are not working normally.
  • Biopsies A biopsy is when tiny pieces of tissue are taken from the body to be checked with 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.
  • X-rays. This test that 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 doctor may give you medication to help treat symptoms. Medications can't cure lupus, but they can help prevent organ damage or suppress the disease. Your doctor will prescribe one or more medications to help you feel better. Be sure to take them as directed. You may be given medications such as:

  • Nonsteroidal anti-inflammatory drugs (NSAIDS). These can be used to help relieve swelling, pain, and fever.
  • 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 medication may also help prevent blood clots. You may be given hydroxychloroquine, quinacrine, chloroquine, or a combination of these.
  • Corticosteroid medicines. These can help people when lupus affects the kidneys, lungs, or heart, or nervous system.
  • Drugs that suppress the immune system. These can help treat severe symptoms of lupus that has attacked organs.
  • Other medications. A type of medicine called a biologic may be an option. Clinical trials are also being done to test other medications that may help people with lupus.

Talk with your health care providers about the risks, benefits, and possible side effects of all medications.

Lupus can also be managed by keeping a healthy lifestyle. Here are ways to take care of yourself:

  • Get enough sleep. Aim for 8 to 10 hours of sleep at night. Take naps and breaks during the day.
  • Eat a healthy diet.
  • Maintain a healthy weight.
  • Exercise a few times a week, at least.
  • Learn ways to reduce or manage stress.
  • Stay out of the sun as much as you can. Wear clothes that cover your skin. Use sunscreen with SPF 15 or higher.
  • Treat infections right away.
  • Do not smoke.

Work with your doctor to manage your lupus. Be sure to see your doctor for regular checkups and tests.

Children with lupus should not receive vaccines with live viruses. This includes chickenpox, MMR (measles, mumps, rubella), and oral polio vaccines. Talk with your child's health care provider about all vaccines.

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 ability to work. Possible complications can include:

  • Swelling in legs and ankles (edema)
  • Inflammation of tissue around the lungs that causes chest pain when breathing (pleurisy)
  • Inflammation of the lining of the heart (pericarditis)
  • Fluid around the lungs, heart, or other organs
  • Seizures
  • Kidney failure
  • Miscarriage

If you are a woman of child-bearing age, talk with your health care provider about the risks of pregnancy and lupus. Lupus symptoms can flare during pregnancy. Pregnancy with lupus is high-risk, so you will need extra care from your health care team. You may need to see your health care 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 occur. 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 health care provider to adjust your medication. 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 health care provider?

If your symptoms get worse or you have new symptoms, let your health care provider know.

Key points about lupus

  • Lupus is a disease that causes episodes of inflammation of and damage to many parts of the body, including skin and organs.
  • It is caused by both genes and environmental factors.
  • Symptoms include a rash, fever, joint inflammation and pain, and sensitivity to the sun.
  • Lupus can range from a mild disease to a life-threatening disease.
  • There is no cure for lupus, but medications and lifestyle changes can help you manage the disease.

Next steps

Tips to help you get the most from a visit to your health care provider:

  • Before your visit, write down questions you want answered.
  • Bring someone with you to help you ask questions and remember what your provider tells you.
  • At the visit, write down the names of new medicines, treatments, or tests, and any new instructions your provider gives you.
  • If you have a follow-up appointment, write down the date, time, and purpose for that visit.
  • Know how you can contact your provider if you have questions.
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