Lupus (Systemic Lupus Erythematosus)
What is lupus?
Systemic lupus erythematosus (SLE), commonly referred to simply as lupus, is a chronic autoimmune disease that can cause swelling (inflammation) and pain throughout your body. When you have an autoimmune disease, your body’s immune system fights itself. The immune system is supposed to fight possible threats to the body — infections, for example — but, in this case, it goes after healthy tissue.
If you have lupus, you might experience joint pain, skin sensitivities and rashes, and issues with internal organs (brain, lungs, kidneys and heart). Many of your symptoms might come and go in waves — often called flare-ups. At times, symptoms of lupus might be mild or not noticeable (meaning they’re in remission). Other times, you could experience severe symptoms of the condition that heavily impact your daily life.
What are the different types of lupus?
There are several different types of lupus. Systemic lupus erythematosus is the most common. Other types of lupus include:
- Cutaneous lupus erythematosus: This type of lupus affects the skin — cutaneous is a term meaning skin. Individuals with cutaneous lupus erythematosus may experience skin issues like a sensitivity to the sun and rashes. Hair loss can also be a symptom of this condition.
- Drug-induced lupus: These cases of lupus are caused by certain medications. People with drug-induced lupus may have many of the same symptoms of systemic lupus erythematosus, but it’s usually temporary. Often, this type of lupus goes away once you stop the medication that’s causing it.
- Neonatal lupus: A rare type of lupus, neonatal lupus is a condition found in infants at birth. Children born with neonatal lupus have antibodies that were passed to them from their mother — who either had lupus at the time of the pregnancy or may have the condition later in life. Not every baby born to a mother with lupus will have the disease.
Who is affected by lupus?
Anyone can have lupus. It can happen to women, men, children and even newborns. It’s much more commonly seen in women than men, with about 90% of diagnosed cases being women of reproductive age. Experts have a difficult time estimating how many people in the United States have lupus because it is difficult to diagnose. Lupus has a wide variety of symptoms that can also be signs of other medical conditions. Because of this, there may be people with lupus who go undiagnosed throughout their lives.
Lupus is also more prominent in certain ethnicities. African-American, Hispanic, Asian and Native American women are all more likely to develop the condition than Caucasian women.
Your risk of having lupus is also increased if you have a family member with lupus or another autoimmune disease.
Is lupus more common in women?
Lupus is much more common in women, with nine out of 10 cases happening in women. Often, women are diagnosed between the ages of 15 and 44 — during their reproductive years. Even though the cause of lupus is unknown, it’s thought that the hormone estrogen may play a part in the condition.
What does lupus do to the body?
Lupus can impact many different parts of your body. It can cause aches and pains, as well as serious complications to your major organs. Because lupus is an autoimmune disease, it causes your body to attack itself. This can lead to organ damage over time.
Parts of the body that can be impacted by lupus can include the skin, blood, joints, kidneys, brain, heart and lungs.
- Skin: Skin problems are a common feature of lupus. Some people with lupus have a red rash over their cheeks and the bridge of their nose. Because the location of this rash is the same as the common markings of a wolf, the name "lupus" (wolf in Latin) was given to this disease many years ago. Other skin problems that may happen include large red, circular rashes (plaques), which may scar (called discoid lupus). Skin rashes are usually made worse by sunlight. Hair loss and mouth sores are also common.
- Blood: Blood involvement can happen with or without other symptoms. Individuals with lupus may have dangerous reductions in the number of red blood cells, white blood cells or platelets (cells that help clot the blood). Sometimes, changes in blood counts may contribute to symptoms of fatigue (low red blood cell count, anemia), serious infections (low white blood cell count), or easy bruising (low platelet count). However, many people do not have symptoms that indicate blood abnormalities, so it’s important to have periodic blood tests in order to detect any problems. Blood clots are seen with increased frequency in lupus. Clots often happen in the legs (a vein clot, called deep venous thrombosis), lungs (a lung clot, called pulmonary embolus), or brain (stroke). Blood clots that develop in lupus patients may be associated with the production of antiphospholipid antibodies. These antibodies are abnormal proteins that may increase the tendency of the blood to clot.
- Joints: Arthritis is very common in people who have lupus. There may be pain, with or without swelling. Stiffness and pain may be especially uncomfortable in the morning. Arthritis may be a problem for only a few days to weeks or may be a permanent feature of the disease. Fortunately, arthritis is usually not crippling.
- Kidneys: Kidney involvement in people with lupus is potentially life threatening and may occur in up to half of lupus patients. Kidney problems may become apparent when lupus patients feel ill with arthritis, have a rash, fever and weight loss. Less often, kidney disease may happen when there are no other symptoms of lupus. Kidney disease itself usually doesn’t produce symptoms until it’s in the advanced stages. It is important that kidney disease be diagnosed early and treated appropriately. The earliest signs of kidney disease are apparent from a urine test called urinalysis.
- Brain: Fortunately, brain involvement is a rare problem in people with lupus. When present, it may cause confusion, depression, seizures and, rarely, strokes.
- Heart and lungs: Heart and lung involvement is often caused by inflammation of the covering of the heart (pericardium) and lungs (pleura). When these structures become inflamed, you may develop chest pain, irregular heartbeat and build up of fluid around the lungs (pleuritis or pleurisy) and heart (pericarditis).
Symptoms and Causes
What causes lupus?
The cause of lupus is currently unknown. Researchers are still working to learn more about the reason lupus happens. Even though the exact cause isn’t known, there are factors that may play into the condition. Possible factors that could cause lupus can include:
- Hormonal changes: Women are more likely to experience lupus than men and this could be partly due to hormones like estrogen. Lupus is often seen in women during their reproductive years (ages 15 to 44) when estrogen levels are higher.
- Environmental factors: Different aspects of your environment can also increase your risk of having lupus. Factors like the amount of sunlight you’re exposed to, medications you take, viruses you might have been exposed to, or even stress, can all be possible causes of lupus. A history of smoking can also be a possible cause of lupus.
- Your family history: There may be a genetic factor to lupus. If you have family members who have lupus, your risk of the disease is increased.
What are the symptoms of lupus?
There are a wide variety of symptoms you might experience if you have lupus. Not everyone with lupus will have the same set of symptoms. Also, many of these symptoms overlap with what you could experience with other medical conditions. This is one of the difficulties in diagnosing someone with lupus.
The symptoms of lupus can be slow to develop. You may notice new symptoms over time. The severity of your symptoms can also change over time. Sometimes symptoms may barely be present (in remission), while other times they could flare up. A flare-up is when a symptom is suddenly more severe than before.
Symptoms of lupus can include:
- Joint pain.
- Muscle pain.
- Sensitivity to sunlight.
- Hair loss.
- Mouth sores.
- Dry eyes.
- Chest pain.
- Stomach pain.
- Shortness of breath.
- Swollen glands.
- Issues with the kidneys, heart or lungs.
- Blood clots.
- Raynaud’s phenomenon.
What are the symptoms of lupus in women?
A majority of the people diagnosed with lupus are women. Women tend to experience the general symptoms of lupus, but they can also have complications that impact various parts of the body. These complications can include kidney problems (more commonly seen in African-American and Hispanic women than other groups), osteoporosis and heart disease.
What is the lupus rash?
A skin rash is one common symptom of lupus. Rashes from lupus are often from prolonged sun exposure, and usually last days to weeks. You can have a rash on your face, hands or wrists. When you have a rash on your face, it typically extends across the bridge of your nose and onto each of your cheeks. This is often referred to as a “butterfly rash” because of the shape across your face.
Skin rashes can be uncomfortable and itchy. These rashes can sometimes fade after a short period of time. However, some rashes and sores on your skin can be permanent.
Why does lupus cause hair loss?
One of the complications of lupus can be damage to your skin and hair loss. People with lupus can develop scarring on their skin and scalp from rashes. This can cause your hair to thin and fall out. You could also experience hair loss as a side effect of some medications that treat lupus — hair loss can be a side effect of steroids. If your hair is thinning or falling out, talk to your healthcare provider. Sometimes, changing your medications can help with this issue. Your provider might also recommend using gentle shampoos (baby shampoo).
Why does lupus cause weight gain or weight loss?
Many people with lupus may experience weight loss. This can be caused by the medications that are used to treat lupus or from the discomfort of the disease itself. On the flip side, some people may gain weight if they find that they are inactive due to joint pain. It’s important to maintain a healthy diet when you have lupus. Talk to your healthcare provider — and possibly a nutritionist (a food specialist) — to determine the best diet for you.
Diagnosis and Tests
How is lupus diagnosed?
The diagnosis process can be long and difficult for lupus. The symptoms that you might experience with lupus can overlap with those of other conditions — for example, diabetes and arthritis. Symptoms of lupus may also take time to develop, adding to the challenge of diagnosing the disease.
Your healthcare provider will typically start with a family history to see if lupus runs in your family. Then, your provider will want to discuss any symptoms you’ve experienced. After talking to you about your symptoms, your provider will typically do some lab tests. These tests are looking for things like low blood cell counts, anemia and other abnormalities.
The provider may also do an antinuclear antibody (ANA) test. This test looks for antibodies — proteins in your body that defend against disease — that could be a sign you have an autoimmune disease. People who have systemic lupus erythematosus usually test positive for ANAs.
Does a positive antinuclear antibody (ANA) test mean I have lupus?
Testing positive for antinuclear antibodies alone does not mean you have lupus. The ANA test is positive in most people with lupus, but it’s also positive in many people who do not have lupus. Because of this, a positive ANA alone isn’t enough to diagnosis you with lupus. Your provider will typically look for at least three other clinical features (including symptoms and family history) before making a diagnosis of lupus.
Management and Treatment
How is lupus treated?
The way your provider treats lupus can depend on several factors, including:
- The symptoms and complications you are experiencing.
- The severity of your case.
- Your age.
- The type of medications you may be taking.
- Your general health.
- Your medical history.
Lupus is a life-long (chronic) condition that will needed to be managed regularly. The goal with treatment is to get your symptoms into remission (not active) and limit the amount of damage the disease does to your organs. Unfortunately, lupus is unpredictable and the way the condition impacts you can shift and change over time. You will need to regularly visit your healthcare provider and adapt your care plan to match your symptoms.
Some people with mild features of lupus might require limited treatment. These individuals may have symptoms that are monitored and watched to make sure they do not get worse, but they aren’t currently in need of treatment. Others may need an aggressive treatment plan. These individuals tend to have more serious complications (like heart, lung or kidney complications). Your healthcare provider will discuss the best treatment options with you based on your symptoms, complications and medical history.
What are common lupus medications?
Medications that can be used to treat lupus include:
- Steroids (corticosteroids, including prednisone): Steroid creams can be directly applied to rashes. The use of creams is usually safe and effective, especially for mild rashes. The use of steroid creams or pills in low doses can be effective for mild or moderate features of lupus. Steroids can also be used in higher doses when internal organs are threatened. Unfortunately, high doses are also most likely to produce side effects.
- Hydroxychloroquine (Plaquenil®): This medication is commonly used to help keep mild lupus-related problems, such as skin and joint disease, under control. It’s also used to treat fatigue and mouth sores.
- Azathioprine (Imuran®): A medication originally used to prevent rejection of transplanted organs, this is commonly used to treat the more serious features of lupus.
- Methotrexate (Rheumatrex®): This medication is another chemotherapy drug that’s used to suppress the immune system. Its use is becoming increasingly popular for skin disease, arthritis and other non-life threatening forms of disease that have not responded to medications such as hydroxychloroquine or low doses of prednisone.
- Cyclophosphamide (Cytoxan®) and mycophenolate mofetil (CellCept®): These medications are chemotherapy drugs that have very powerful effects on reducing the activity of the immune system. They are used to treat more severe forms of lupus, especially lupus that affects the kidneys.
- Belimumab (Benlysta®): This medication is a monoclonal antibody that reduces the activity of white blood cells (lymphocytes) that make autoantibodies. Autoantibodies are important as they cause tissue damage. Belimumab is used to treat lupus that does not involve the kidneys and has not responded to other types of treatments.
- Rituximab (Rituxan®): This medication is also a monoclonal antibody that reduces the activity of white blood cells (lymphocytes) that make autoantibodies. It’s sometimes used to treat lupus that has not responded to other types of treatments.
Outlook / Prognosis
Can lupus be cured?
There’s currently no cure for lupus. Treatment of lupus is focused on controlling your symptoms and limiting the amount of the damage the disease does to your body. The condition can be managed to minimize the impact lupus has on your life, but it will never go away.
Can you die from lupus?
In most cases, death wouldn’t be caused directly by lupus, but by the symptoms and damage to organs. Issues like kidney damage, cardiovascular disease and infections can cause serious harm and be life-threatening.
Is lupus contagious?
Lupus is not contagious and cannot be passed from one person to another by touch, sneeze or cough.
Can I get pregnant if I have lupus?
Women with lupus can get pregnant. However, there is a risk of poor pregnancy outcomes (miscarriage) in people with lupus. If you’re considering a future pregnancy, start talking to your healthcare provider several months in advance during a preconception appointment. Your provider may need to adjust your lupus medications to ensure that they’re safe for pregnancy.
If I have lupus, will I pass it on to my children?
There can be a genetic factor to lupus. Your risk of having lupus increases if you have other family members with the condition. A mother with lupus can pass it on to her child. However, this doesn’t always happen, nor does it happen often. Some women with lupus deliver a baby with the condition, while others do not. If you have a family history of lupus or have lupus yourself and are thinking about getting pregnant, talk to your healthcare provider.
What can I do to prevent lupus flare-ups?
While lupus itself can’t be prevented, you can make changes to your daily life to help avoid flare-ups of your symptoms. A few things to try can include:
- Avoiding sun exposure: For many with lupus, sun exposure can be an issue. Try avoiding going outside during peak hours when the sun is out, wearing protective clothing (long sleeves and a brimmed hat) and wearing sunscreen.
- Staying in motion: Joint pain can make you want to sit down and rest, but doing low-impact exercises can actually help.
- Maintaining healthy habits: A few habits to keep in mind include making healthy choices when it comes to your food, getting plenty of sleep and cutting back on the stress in your life. There is also a strong link between lupus and heart disease. Make sure you are working with your healthcare team to reduce your risk of heart issues.
A note from Cleveland Clinic
If you are experiencing the symptoms of lupus, reach out to your healthcare provider. Lupus can take a long time to diagnose because of the wide range of symptoms and the way symptoms slowly build over time. Getting diagnosed is the first step to managing the condition and improving your quality of life.
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