Systemic lupus erythematosus (SLE or lupus) is an autoimmune disease that causes your body’s immune system to attack its own cells and tissues. It causes episodes of inflammation to various parts of the body, as well as rashes, fatigue, pain, and fever. Lupus can affect your joints, tendons, skin, blood vessels, kidneys, heart, lungs, and brain. Severe lupus can cause harm to organs and other serious problems.
Lupus affects people differently
Lupus is a chronic (long-term) disease, and it affects each person differently. The effects of the illness range from mild to severe. Symptoms of lupus may come and go in phases known as flare-ups, periods of remission, and relapse.
Lupus symptoms can be managed
Lupus has no known cure, but medicines may help manage symptoms. An estimated 80-90% of people will live a full lifetime with a lupus diagnosis.
What causes lupus?
An immune system disorder. 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.
In the United States, an estimated 1.5 million people live with lupus. About 16,000 new cases are diagnosed annually. Experts believe lupus may be caused by a mix of genes and other factors, such as exposure to the Epstein-Barr virus (EBV), which causes mononucleosis. Other environmental factors such as exposure to sunlight and physical factors such as stress or hormones (specifically the female hormone estrogen) can trigger lupus.
Lupus is not a contagious disease, meaning you cannot catch or spread it.
Drug-induced lupus. In some instances, drug-induced lupus is caused by a reaction to prescription medications. An estimated 10 percent of people with lupus have symptoms due to this kind of reaction. Around 80 drugs may cause the condition, including some blood pressure medications, anti-seizure drugs, and antibiotics.
Symptoms of lupus
There is no early symptom of lupus, and when symptoms do occur, they typically vary from person to person. Lupus signs can appear in many parts of the body, and may come and go.
Some common lupus symptoms include:
- Chest pain.
- Dry eyes.
- Extreme tiredness (fatigue).
- Loss of appetite.
- Memory problems and confusion.
- Muscle pain.
- Shortness of breath.
- Swollen glands and lymph nodes.
- Swollen, stiff, or painful joints (arthritis).
- Weight loss.
Many people with lupus also have a variety of symptoms that affect their skin and hair, which may include:
- Butterfly-shaped rash on the nose and cheeks of the face (malar rash).
- Hair loss.
- Pale, blue, or red fingers triggered by cold, stress, or illness (Raynaud phenomenon).
- Raised rash on the head, arms, chest, or back.
- Rashes or lesions caused by sunlight.
- Nose or mouth sores or mouth ulcers.
Symptoms of lupus can look like other health problems, such as arthritis or diabetes. Make sure to see your healthcare provider for a diagnosis and to get the proper treatment you need.
Who is at risk for lupus?
Anyone can develop lupus, but there are certain risk factors that may increase your likelihood of developing the disease. These include:
- Sex: Nine out of ten people diagnosed with lupus are female. The hormone estrogen is linked with lupus.
- Race/ethnicity: African Americans, Asian Americans, Hispanics, and Native Americans are more likely to develop lupus.
- Age: People between ages of 15 and 44 years are most likely to develop lupus. Lupus in children occurs most often in those age 15 and older. However, around 20% of cases are diagnosed in people who are older than 50.
- Family history: People with a family member that has lupus or another autoimmune disease are likely to also have lupus.
Types of lupus
There are several kinds of lupus, including:
- Systemic lupus erythematosus (SLE), lupus that impacts the entire body. This is the most common kind of lupus.
- Discoid lupus erythematosus (DLE, cutaneous lupus erythematosus), a form of lupus that affects the skin, causing a red rash that doesn’t go away.
- Drug-induced lupus, a lupus-like disease caused by certain prescription medication.
- Neonatal lupus, a rare condition that affects infants of people who have lupus.
How is lupus diagnosed?
Lupus is a challenging disease to diagnose because many of the symptoms could be from other causes. The symptoms also develop slowly over time. Doctors do not have a simple “yes” or “no” test for the diagnosis of lupus, therefore you may need multiple tests to gather all information.
Initial steps to diagnosis
To diagnose lupus, your healthcare provider will ask about your medical history and your symptoms, and may perform a physical examination. Your healthcare provider may suspect you have lupus if you have 4 or more symptoms and no specific cause.
They may ask the following questions in your evaluation:
- What symptoms are you experiencing?
- How often do you experience said symptoms?
- When did you first begin to experience symptoms?
- Does anything make your symptoms feel better or worse?
- Are your symptoms constant, or do they go away?
- Do you have any symptoms that get worse at certain times in the day?
- Do your symptoms interfere with your daily routine and livelihood?
- Do you have a family member with an autoimmune disease or lupus?
You may have laboratory tests to help confirm the diagnosis, notably to look for changes in your body such as inflammation. Your provider may order certain blood tests, such as:
- Antibody blood tests. These tests are done to look for certain kinds of antibodies in your blood to find out if your immune system is attacking healthy tissue. The main test for lupus is the antinuclear antibodies (ANA) test. Most people with lupus will have a positive ANA test result.
- Complete blood count (CBC). This test checks for low red blood cell counts, white blood cells, platelets which help your blood clot, and the protein hemoglobin. Results may indicate you have anemia, which commonly occurs in lupus
- Complement test. This test is done to measure the level of complement, a group of proteins in the blood that help destroy foreign substances. Low levels of complement in the blood are often linked with lupus and show signs of inflammation.
- 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 protein shows up when inflammation is found in the body. ESR and CRP show similar amounts of inflammation. But in some cases, 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 done, such as:
- Urine tests. These look for blood or protein in the urine to assess your kidney function.
- 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 to look for inflammation or damage to these organs.
- Echocardiogram. Using sound waves to produce real-time images of your beating heart, an echocardiogram can check for problems with your valves and heart muscles.
- X-rays. This test uses a small amount of radiation to create images of organs, bones, and other tissues. These images may reveal abnormal shadows that suggest fluid or inflammation in your lungs.
Treatments for lupus
If your health care provider confirms you have lupus, they will work with you and a special doctor called a rheumatologist (a doctor who specializes in the diseases of joints and muscles) to create a treatment plan to alleviate your symptoms. Although there is no cure for lupus, a proper treatment plan will help you stay on top of your health, manage symptoms, and have a better quality of life.
The main goal for your treatment options will include the following:
- Controlling your symptoms to minimize fatigue, inflammation, and joint pain.
- Preventing your immune system from attacking your body.
- Protecting you from organ damage or organ failure.
Because lupus can cause an array of symptoms, there are many different kinds of medicines that can treat it. Your doctor may recommend the following as a part of your treatment plan:
- Anticoagulants to prevent the risk of blood clots.
- Nonsteroidal anti-inflammatory drugs (NSAIDs) to help reduce inflammation, pain, and fever.
- Antimalarials to protect your skin from rashes and UV light and reduce lupus flare-ups.
- Biologics to help your immune system work correctly.
- Immunosuppressants to help keep your immune system from attacking your body.
- Steroids to help with inflammation.
As with any medication, side effects can occur. Always speak to your doctor to know what changes to watch for, if your medications may interact with one another, what the appropriate dosage is, and how to combat any serious side effects.
It is also important to inform your provider if you are pregnant or breastfeeding to know which treatments are safe for both you and your baby.
Frequently asked questions about lupus
Yes. If left untreated, lupus can affect many areas of the body and increase your risk of developing serious problems. If you have lupus, you are at higher risk of developing the following complications:
- Cancer. Having lupus appears to have a slight increase to your risk of getting cancer.
- Since lupus is an autoimmune disease, you may be more vulnerable to infection due to both the disease and certain treatments that weaken the immune system.
- Pregnancy complications. If you are pregnant and diagnose with lupus, you are at higher risk of miscarriage or preterm birth. This is due to the risk of high blood pressure during pregnancy with lupus. Doctors often recommend delaying pregnancy until your disease has been under control for at least six months to prevent such complications.
Certain internal organs are also adversely affected by inflammation caused by lupus. These include:
- Brain and central nervous system. Lupus can cause behavior changes, dizziness, memory problems, strokes or seizures, and vision problems when it affects the brain.
- Blood and blood vessels. Lupus can reduce your number of healthy red blood cells (anemia) and increase your risk of bleeding or blood clotting. It also causes blood vessel inflammation.
- Heart. Lupus can cause inflammation of your heart muscle, your arteries or heart membrane, increasing your risk for heart attacks and cardiovascular disease.
- Lupus can cause serious kidney damage, and kidney failure is one of the leading causes of death among people with lupus.
- Having lupus increases your chances of developing an inflammation of the chest cavity lining, which can make breathing painful. Lupus can also cause bleeding in the lungs and pneumonia.
See your doctor immediately if you develop an unexplained rash, ongoing fever, persistent aching or fatigue, or any of the above complications.
Lupus is a challenging disease that affects every facet of your daily life. You may struggle to cope with your diagnosis, the constant pain, or even feel alone throughout treatment. It is important to know there are a variety of resources to help you adjust to treatment and get back to living your life.
Take steps to help prevent flare-ups
There are certain measures that can be taken to help you prevent lupus flares and, should they occur, better cope with the signs and symptoms you experience. Practicing the following can help you manage life with lupus:
- Ask your doctor if you need vitamin D and calcium supplements. Some evidence suggests that vitamin D supplements can benefit people with lupus. A calcium supplement can help you meet the daily recommended dietary allowance to help keep your bones healthy.
- Be sun smart. Wear protective clothing (such as a hat, long-sleeved shirt, and pants) as well as sunscreen (SPF 55 minimum) every time you go outside to prevent flare-ups caused by sun exposure.
- Don’t smoke. Smoking increases your risk of cardiovascular disease and can worsen the effects of lupus on your heart and blood vessels. If you do smoke, sign up for smoking cessation training to stop.
- Eat a healthy diet. Eat a healthy diet rich in fruits, vegetables and whole grains.
- Exercise regularly. Exercise can help keep your bones strong, reduce your risk of heart attack and promote general well-being.
- See your doctor regularly. Have regular check ups to prevent flares and address routine health concerns, such as stress, diet and exercise that can be helpful in preventing lupus complications.