Overview

What is lupus?

Lupus (say: loop-us) is a disease of the immune system that can affect many parts of the body. Normally, antibodies produced by the immune system help protect the body against viruses, bacteria and other foreign substances. In people who have lupus, the immune system becomes overactive and attacks healthy cells and tissue by mistake.

Are there different types of lupus?

There are several kinds of lupus. Your symptoms may vary depending on which type of lupus you have.

Systemic lupus erythematosus (SLE) is the most common and most serious type of lupus. This kind of lupus can affect any of the systems of the body, including blood vessels, joints, kidneys, skin, the heart and lungs, and even the brain and nerves. Symptoms of SLE can be mild or severe.

Discoid lupus erythematosus (DLE) is sometimes called cutaneous lupus erythematosus. This kind of lupus only affects the skin. It does not affect other organs the way SLE does, but some people who have DLE may also develop SLE lupus. Usually a person who has DLE will notice a red rash or scaly patch, commonly on the face or scalp. The rash is often in the shape of a circle or disk. The rash may last a few days or sometimes years. It can go away for a while and then come back. Sometimes DLE can show up as sores in the mouth or nose.

Drug-induced lupus is caused by a reaction to certain prescription medicines that usually have been taken for a long time. The symptoms of this type of lupus are similar to symptoms of SLE, including muscle and joint pain, a rash and fever. But drug-induced lupus does not cause problems with the kidneys, the heart, the brain or blood vessels. The symptoms are usually mild, and most of the time will go away after you stop taking the medicine. Men are more likely to get this kind of lupus. This is because some of the drugs with the highest risk of causing it are used to treat certain heart conditions that are more common in men.

Neonatal lupus is a rare form of lupus that affects newborn babies. Babies who have neonatal lupus are born with a skin rash, and sometimes liver and heart problems. For most babies, the symptoms gradually go away over several months. In rare cases, neonatal lupus can cause a serious heart problem. Doctors think that neonatal lupus might be caused in part by certain proteins in the mother’s blood that are passed on to the baby at birth. If you are pregnant and know you have SLE, your doctor will probably want to monitor you closely during pregnancy for certain complications. However, most babies of mothers who have SLE are entirely healthy.

Symptoms

How does lupus affect my body?

Lupus can affect many parts of the body, including your joints, skin, kidneys, heart and lungs. If you have lupus, your symptoms can develop quickly or slowly. Symptoms can also come and go, and they can be mild or severe.

What are the symptoms of lupus?

Lupus can look like different diseases in different people. Not everyone who has lupus has the same symptoms. Common symptoms of lupus may include:

Less common symptoms include:

  • Red rashes, often on the face and in the shape of a butterfly (called a malar rash)
  • Fever
  • Joint pain or swelling
  • Muscle pain
  • Mouth ulcers
  • Chest pain with deep breathing
  • Sensitivity to the sun or light
  • Low blood count
  • Trouble thinking, and/or memory problems
  • Hair loss (alopecia)
  • Feeling tired all the time
  • Kidney problems
  • Swollen glands
  • Blood clots
  • Pale or blue fingers or toes from cold or stress (Raynaud’s Disease)
  • Unexplained seizures
  • Weight loss or weight gain
  • Dry eyes
  • Severe headache
  • Dizziness
  • Stroke
  • Depression
  • “Seeing things” (hallucinations)
  • Repeated miscarriages

What are the symptoms of lupus in children?

Children can have all the same symptoms of lupus that adults have, but they are more likely to have the following symptoms:

  • A butterfly-shaped red rash (called a malar rash) over the bridge of the nose and the cheeks.
  • Low red blood cell count (anemia)
  • Low white blood cell count (leukocytopenia)
  • More severe brain or kidney problems

What is a flare?

Symptoms of lupus can come and go, and often disappear completely for a time. When symptoms appear or get worse, it’s called a “flare.” You may have swollen joints and muscle pain one week and then no symptoms at all the next week.

Causes & Risk Factors

Who gets lupus?

Lupus can affect anyone, but it is more common in women between the ages of 15 and 44. African American, Hispanic, Asian and Native American women are more likely to have lupus than people of other races.

What causes a flare?

Flares are often caused by triggers, such as the following:

If you learn to recognize that a flare is coming, you can take steps to prevent it and better prepare yourself to cope with the symptoms.

  • Not enough rest
  • Overwork and stress
  • Too much sun exposure, or exposure to fluorescent or halogen light
  • Infection
  • Injury
  • Stopping your lupus medicines
  • Certain medicines

Diagnosis & Tests

How do I know if I have lupus?

Lupus can be difficult to diagnose. It is different for every person who has it. Symptoms of lupus can come and go, and can affect different parts of the body. There is no one test to diagnose lupus. However, there are a number of symptoms that, grouped together, can help your doctor decide if you should have more medical tests.

Your doctor may want to order blood and urine tests:

Blood tests can also show how well your kidneys and liver are working, and if these organs have been affected by lupus. Your doctor may also recommend a chest x-ray because lupus can sometimes cause swelling in the lungs and heart. An electrocardiogram test (ECG) checks for an irregular heart beat or any damage to the heart that may have been caused by lupus.

  • Antinuclear antibody (ANA) test. This test checks for antibodies to the nucleus of your cells. A positive result shows that your immune system is making antibodies against your cells. This may not mean that you have lupus, but your doctor may recommend you see a specialist for more testing.
  • Complete blood count. The numbers of red cells, white cells and platelets are commonly affected in people who have lupus. You may be checked for anemia or the presence of certain proteins in the blood.
  • Syphilis test. A false-positive test result showing the presence of certain antibodies (proteins in the blood) can be a sign of lupus.
  • Erythrocyte sedimentation rate (ESR) and C-reactive protein (CRP) tests. Results from these tests are used to tell if there is inflammation (swelling) in the body.
  • Urinalysis. Extra protein in the urine may show up in a lab test if lupus affects your kidneys.

Treatment

How is lupus treated?

There is no cure for lupus, but treatments have improved in recent years. The kind of treatment you will need will depend on what symptoms you have and how severe your symptoms are.

If you have joint pain, sore muscles, or skin problems such as a rash, your doctor may recommend that you take nonsteroidal anti-inflammatory drugs (NSAIDs) such as ibuprofen (some brand names: Advil, Motrin) or naproxen (one brand name: Aleve). Medicine that is used to treat malaria, such as hydroxychloroquine, can also be helpful in treating symptoms of lupus and preventing flares. Some people have side effects from this kind of medicine, including problems with vision and muscle strength. Corticosteroids are another kind of medicine sometimes recommended to help with inflammation, but these medicines can have more serious side effects.

If you have signs or symptoms of lupus that cause problems in vital organs or the central nervous system (heart, brain and blood vessels), you will probably need stronger medicines. Stronger drugs also have the potential for more severe side-effects, and your doctor will want to monitor you closely. High-dose corticosteroids, such as prednisone, can be given by mouth or through a vein in your arm. Medicines that suppress the immune system (cyclophosphamide, azathioprine) are sometimes used to help manage severe symptoms of lupus. Both kinds of medicine can help control dangerous symptoms quickly and prevent more permanent damage. Sometimes they are used together so that the amount of each medicine is reduced. This may lessen the risk of side effects.

Because of the risk of side effects from medicines, your doctor may want you to stop taking certain drugs if your lupus symptoms go away for a time (into remission). However, even if you don’t have signs or symptoms, your lupus can cause problems later, like kidney disease and kidney failure, or atherosclerosis (build-up in the arteries) which can lead to heart attack or stroke. This is why it is important to maintain good health (quit smoking, reduce high blood pressure or cholesterol) and see your doctor regularly for check-ups.

What can I do to feel better and help prevent flares?

Get plenty of rest but also get regular exercise. Fatigue is a common symptom of lupus, so try to maintain good sleep habits at night and, if possible, nap during the day, as needed. Even though you won’t always feel like it, regular exercise will help you sleep better, as well as improve your mood and help with heart health. Try to avoid outside activities when you are having a flare. Exposure to the sun can make your symptoms worse.

Protect yourself from the sun. Wear clothing that covers as much of your skin as possible. Always use sunscreen, even if you are only going outside for a couple of minutes. Don’t use tanning beds. Also avoid fluorescent and halogen lighting wherever possible. The sun, tanning beds and fluorescent and halogen lights are all sources of ultraviolet light, which is known to trigger lupus symptoms.

Quit smoking (or don’t start). Lupus can affect your heart and blood vessels. If you also smoke, you are at a much higher risk for cardiovascular disease.

Eat a healthy diet. Although there are no foods that have been shown to cause flares, it’s best to avoid food that seems to make your symptoms worse. You may also need to make changes to your diet if lupus causes high blood pressure, stomach or kidney problems. Try to eat a balanced and nutritious diet, including fruits, vegetables and whole grains.

Take your medicine the way your doctor tells you to. Your doctor will explain the benefits and risks of your medicines. Depending on your symptoms and flares, you may need to make adjustments to the type of medicine you take, when you take it, and the dosage. Be sure to follow your doctor’s instructions.

Pay attention to your mental health. Paying attention to your emotional well-being will also help you cope and give you a sense of control. Living with lupus can mean learning to manage a number of different issues separate from the physical and medical problems the disease can cause. These might include the reactions of your family members or coworkers, children acting out (in fear or confusion), as well as your own feelings.

Develop a support network. You can get help from family, friends, neighbors, your family doctor, community services, counselors and support groups. This support network can help you with your physical needs. For example, the nurse at your doctor’s office can help you to organize your medicines, or your children and spouse can allow you time for an afternoon nap. You can also get emotional support from friends and family. They can offer you a safe place to talk about your frustrations or worries.

Stay mindful of your own level of pain and fatigue. This will help you keep realistic expectations about what you can and cannot do. It will also help you better communicate your needs to those around you.

Lupus and Pregnancy

Is pregnancy too risky if I have lupus?

If you have a type of lupus called systemic lupus erythematosus (SLE) and you are thinking about getting pregnant, you may worry about how it will affect you and your baby. Most women who have SLE can have normal pregnancies and healthy babies. However, it is important to plan ahead and get adequate medical care. Talk to your doctor about what you can do to prepare for your pregnancy.

What types of problems can SLE cause during pregnancy?

SLE increases your risk of certain problems during pregnancy, including:

  • Pregnancy-induced hypertension (PIH), also called toxemia or preeclampsia (say “pre-ee-clamp-see-ah”). Symptoms of PIH include sudden increase in blood pressure, fluid retention with leg swelling, and large amounts of protein in the urine.
  • Blood clots that can affect the placenta. Blood clots can interfere with the supply of oxygen and nutrition the placenta delivers to the baby.
  • Early delivery (premature birth). Pregnancy-induced hypertension or blood clots that affect the placenta can cause premature birth.

Will I have a higher risk of miscarrying?

Women who have lupus are at higher risk of miscarrying (about 10%) or delivering early (about 30%). However, most women who have SLE deliver healthy babies.

Will pregnancy make my lupus worse?

Some women who have SLE notice that their symptoms get worse (called a “flare”) during or after pregnancy. However, some normal discomforts of pregnancy may seem like a flare. This is one of the reasons staying in touch with your doctor is so important during pregnancy. Your doctor can tell you what symptoms are normal for pregnancy and identify others that may relate to SLE to treat them right away.

What could put me at greater risk for problems during pregnancy?

If you have SLE and get pregnant while you are having symptoms, you are at greater risk of having problems. Any of the following can increase your risk and require additional monitoring:

  • Your kidneys, heart or lungs are affected by SLE.
  • You have high blood pressure.
  • You had problems during a previous pregnancy.
  • You have certain proteins in your blood that could cause complications.

How can I plan for pregnancy?

Plan to try to become pregnant after you have been feeling healthy, and your symptoms of SLE are under control or not present (in remission) for at least 6 months. Tell your doctor that you are planning to try to get pregnant. Your doctor may want to do some tests, such as blood and urine tests. These tests can help your doctors know what to watch for during your pregnancy.After you get pregnant, be sure to get good prenatal care. Go to your prenatal visits as scheduled by your doctor. This is especially important for women who have SLE. Also, tell your doctor about any symptoms you may have. Your doctor may want to monitor you very closely during pregnancy so any problems can be identified and treated early.

Will I need to stop taking my medicines when I get pregnant?

Before you plan to get pregnant, talk with your doctor about your medicines. Some medicines used to treat SLE are safe during pregnancy, but some are not. Your doctor may change some of your medicines. Your doctor may also recommend that you take medicines that can help prevent problems during pregnancy.

Will I have to have a cesarean section?

This depends on how you are doing at the time of labor and delivery. Your doctor may want you to have a cesarean section (C-section) if you or your baby are having any problems that could worsen during the stress of a vaginal birth.

Will I be able to breastfeed my baby?

Several things can determine if you will be able to breastfeed. If your baby is premature, he or she may not be strong enough to suckle (latch onto the breast and take milk). In this case, you may be able to use a breast pump to collect milk for feeding. If your baby is born earlier than expected, your breasts may not be quite ready to produce milk. Some medicines can interfere with producing milk, or can be passed through breast milk and be harmful to the baby. Many medicines are safe though, especially if taken at low doses. Be sure to talk to your doctor about your medicines and how they may affect breastfeeding.

Will my baby be healthy?

Babies born to mothers who have SLE are not at higher risk of birth defects or mental disabilities.

Will my baby have SLE?

Probably not. A very small number (about 3%) of babies born to women who have SLE have neonatal lupus. Neonatal lupus is not the same as lupus in adults. It appears to be caused by proteins in the mother’s blood that pass to the baby at birth.Most of the symptoms of neonatal lupus go away during the first few months after birth. These symptoms may include a rash on the face, head and chest, and problems with the liver and with blood counts. Rarely, babies who have neonatal lupus also may have a heart problem that affects the heartbeat. This problem can be serious, but it is treatable.

Will I be able to care for my newborn baby?

If you have SLE and are planning to get pregnant, also plan for support after the birth. It’s hard to tell how you might be feeling after giving birth. Some women who have SLE do just fine while others may experience a flare of symptoms either during pregnancy or in the weeks and months after delivery. Put a plan into place just in case you need it. Call on your spouse or partner, other family members and friends for help and support.

Checklist for Lupus and Pregnancy

  • Talk to your doctor before you try to get pregnant. He or she can help guide you regarding the timing of your pregnancy, your symptoms and your treatment.
  • Plan to get pregnant when your symptoms are not present or have been under control for at least 6 months.
  • Some medicines are safe during pregnancy, while others are not. Be sure to talk to your doctor about possible medicine changes. Don’t stop taking your medicines without talking to your doctor.
  • Your doctor may want you to have blood and urine tests before you become pregnant. These tests can show if you have proteins in your blood that could require extra monitoring of you and your baby during pregnancy.
  • If you have any symptoms—old or new—during pregnancy, be sure to let your doctor know right away.
  • If you do not wish to get pregnant, talk to your doctor about birth control methods that would be a good fit for you.

Complications

How does lupus affect parts of the body?

Kidneys

Your kidneys get rid of waste and other toxins from the body. Lupus can affect the kidneys and cause inflammation (swelling) of the structures that filter the blood. Without treatment, lupus can lead to permanent kidney damage. If lupus affects your kidneys you will probably need medicine to prevent serious damage. The most common symptom of kidney problems from lupus is swelling in the feet, legs, hands and eyelids.

Heart

Lupus can cause inflammation of the sac around the heart, and you may experience chest pains. Not as commonly, but more seriously, lupus can cause hardening of the walls of the coronary arteries, which can lead to angina and an increased risk of coronary artery disease. Lupus may also cause inflammation of the heart itself, which can lead to scarring and possible heart failure.

Lungs

Problems in the lungs can also cause chest pains, which are often felt with deep breathing. The pain is caused by inflammation of the lining that covers the lungs. People who have lupus may also be more likely to get pneumonia.

Joints

Most people who have lupus have joint pain or swelling from inflammation. The pain and swelling can come and go, and may affect several joints at once. However, there is usually no long-term damage.

Skin

People who have lupus often get a butterfly-shaped, red rash across the nose and cheeks. This kind of rash is called a malar rash. Other parts of the skin may be affected by raised bumps or patchiness, often on areas that are exposed to the sun. You may get sores inside your mouth and nose. Hair loss (alopecia) is common during flares. You may also notice a blotchy purple color on the tips of your fingers, knuckles, the sides of the palms, around the fingernails and on your toes. This happens because blood does not flow well to the skin’s surface, causing it to change color Raynaud’s Disease.

Central Nervous System

Lupus may also affect the brain and the nerves in the spinal cord. Symptoms include headaches, dizziness, mild confusion or memory problems, vision problems and changes in your mood. It can also lead to more serious problems, such as seizures or a stroke.

Blood

Lupus can cause the number of red blood cells, white blood cells, and platelets to decrease. Fewer red blood cells can lead to anemia, which is common in people who have lupus. White blood cells help the body fight infection, but lupus rarely causes them to be low enough to cause infection. Platelets help your blood to clot. A low platelet count can lead to easy bruising, nosebleeds and other bleeding. Lupus can also cause your blood to clot too easily. Sometimes, in people who have lupus, blood clots form where they are not needed or where they shouldn’t. If the blood clot breaks away and travels through the bloodstream, it can block blood vessels and cause serious problems, such as a stroke, blood clots in the lungs (thrombosis) or repeated miscarriages.

What is it like living with lupus?

When you are first diagnosed with lupus, you may have feelings of relief, that you finally have an answer to what is causing your symptoms. As you learn about the disease, you may also have feelings of confusion, sadness, fear, frustration and anger. Some people who have lupus may have bouts of depression because of the challenges of living with this disease. Learning all you can about your illness can help you cope better with your symptoms, flares and any serious health problems lupus may cause.

Questions to Ask Your Doctor

  • What are the symptoms of lupus?
  • What can I do to prevent flares?
  • How is lupus treated?
  • What causes lupus?
  • What lifestyle changes can I make to help manage my condition?
  • Can I pass this condition down to my children?