Some people call lupus an “invisible illness” because it is often not recognizable to others. Lupus is a lifelong disease that can cause pain, redness, and swelling in any part of the body. Researchers estimate that 200,000 Americans have systemic lupus erythematosus (SLE), the most common form of lupus. Anyone can develop lupus, but 90% of lupus diagnoses are in women aged 15-44 years.

What is lupus?

Lupus is a non-infectious and chronic autoimmune disease that affects different parts of the body. In a person with lupus, the immune system attacks healthy tissues and organs, instead of fighting off infection. This may cause pain, redness, swelling, and tissue damage to any organ in the body. There are different types of lupus that affect different organs and systems, including skin, muscle, kidney, and heart.

Who is at risk for lupus?

Anyone can develop lupus. Those with the highest risk of developing lupus are:

• Women, ages 15 – 44 years. 9 out of 10 people who have lupus are women.
• People from certain racial and ethnic minority groups. Lupus is 2 – 3 times more likely to occur in women from certain racial and ethnic minority groups than in non-Hispanic White women. Black or African American and Hispanic/Latino women are more likely to get lupus at a younger age and have more severe symptoms. They are also at greater risk of health complications and death. Social determinants of health, along with hormonal and genetic factors, can lead to more severe disease in racial and ethnic minority groups.
• People with a family history of lupus or other autoimmune diseases.

What are the symptoms of lupus?

Symptoms of lupus vary and can appear off and on for years. Because lupus can affect different parts of the body, it can cause a lot of different symptoms. However, many women with lupus do not have symptoms at all. Common symptoms include:

• Pain or swelling in the joints
• Extreme fatigue
• Butterfly rash on the cheeks and nose
• Swelling in hands, feet, or around the eyes
• Headache
• Low fever
• Chest pain or deep breathing
• Hair loss
• Fingers and toes feeling dumb or turning white or blue (Raynaud’s Disease)

How is lupus diagnosed?

Diagnosing lupus can be challenging because symptoms can vary from person-to-person and can come and go. There is no single test that can diagnose lupus. Sometimes it can take years to gather all the right information for an accurate diagnosis. Getting diagnosed is the first step in managing symptoms and avoiding long-term health damage. Women can track any symptoms and share them with their doctors. Diagnosis often requires medical history, family history, symptoms, and laboratory tests.

How is lupus treated?

Lupus is a chronic disease with no cure. This means that people with lupus can manage their condition with treatment, but it will not go away. Treatment can help improve symptoms, prevent flares, and prevent other health problems caused by lupus. Women should start by seeing a health provider, such as a primary care doctor or staff at a community health clinic. This provider may connect them with a rheumatologist, if needed. A rheumatologist is a doctor who specializes in the diseases of joints, muscles, and systematic autoimmune diseases such as lupus.

Kidney impairment or lupus nephritis is the leading side effect for women with SLE. Those most affected by this form of lupus are African American, Hispanic/Latino, and Asian American women. Women who are Black or African American are four times more likely to have end stage kidney disease caused by lupus.

How is lupus managed?

There’s a lot that women can do to manage lupus. Women with lupus can have a typical lifespan and a high quality of life. Women can take steps to control symptoms, prevent lupus flares, and cope with the challenges of lupus. The best way to keep lupus under control is by following treatment plans and maintaining good general health. Women with lupus should:

• Learn how to tell that a flare is coming.
• See their doctors on schedule.
• Limit the time spent in the sun and in fluorescent and halogen light.
• Get enough sleep and rest.
• Build a support system made up of trusted people they can go to for help.

Self-management education workshops help people with lupus learn how to manage daily life, medications, and doctor visits. These workshops can also help improve energy and pain management. Online tools and apps can be an important part of managing lupus. SELF is a free online self-management program designed to help women with lupus manage symptoms, stress, and medications, as well as work with their healthcare teams.

Women may have times when their lupus symptoms are worse, despite their best efforts. When this happens, women should talk to their doctors about ways to relieve symptoms.

Women with lupus can safely get pregnant and most will have normal pregnancies and healthy babies. However, women with lupus who get pregnant are considered to have “high risk pregnancies.”

Lupus is a complex and mysterious disorder. It arises when the cells that are supposed to protect your body from disease mistakenly assault your own healthy cells and tissues. This attack from within can damage your joints, skin and most other parts of your body. NIH-funded scientists are working to uncover the causes of lupus and find better ways to diagnose and treat the disease.

“Just about anyone can get lupus, but it mostly affects young women. It can rob them of the prime years of their lives,” says NIH’s Dr. Mark Gourley, an expert on lupus and related disorders. The disease often strikes between the ages of 15 and 44. Lupus afflicts about 9 times more women than men. For unknown reasons, African American women are at especially high risk.

No one knows what causes lupus. But researchers suspect that a combination of genes and the environment is to blame.

Lupus comes in different forms. The most common and serious type is called systemic lupus erythematosus. It can cause severe problems throughout the body. Other types can cause temporary skin sores after sun exposure or long-term rashes that may lead to scarring.

Lupus can be difficult to diagnose because its symptoms vary so widely. People with mild lupus may have just a few symptoms, such as skin rashes or achy joints. In other cases, lupus can harm essential organs, including the kidneys and brain.

“Diagnosis is one of the biggest challenges patients can face,” says Gourley. “The most frequent and common symptom is overwhelming fatigue.” But extreme tiredness could be mistaken for many other disorders, including sleep problems. Because of the variable symptoms, some patients can go for months or years without an accurate diagnosis.

No single test can identify lupus, either. Your doctor might perform some tests to rule out other possible causes of your symptoms. Blood tests can also determine if you have certain immune system proteins called antibodies that might be a sign of lupus. These tests also detect inflammation, an internal irritation and swelling that can be caused by your immune system mistakenly attacking your own healthy cells.

Lupus has no cure. But medicines and lifestyle changes can help control it. Patients with joint or chest pain might use anti-inflammation drugs, such as ibuprofen or naproxen. Corticosteroids are stronger drugs that can suppress inflammation, but long-term use may lead to severe side effects. Other drugs can block production or stop the function of immune cells.

In March 2011, a new medication called belimumab was approved by the U.S. Food and Drug Administration. “It’s the first new therapy to be approved for lupus in over 50 years,” says Gourley. The drug is expensive, and it doesn’t work for everyone. Still, it’s led the way for several promising new therapies now being tested in clinical trials.

You can take other steps to lessen or prevent lupus symptoms. “Follow your typical mom’s advice,” says Gourley. “Get plenty of sleep. Eat right. Take good care of your body and exercise. Wear sunscreen. And if you’re on medications, take them as your doctor recommends. That’s the best thing you can do for lupus.”

Recognizing Lupus

Lupus symptoms can vary widely, but here are some common ones:

• Pain or swelling in joints
• Muscle pain
• Fever with no known cause
• Red rashes, often on the face
• Chest pain when taking a deep breath
• Hair loss
• Pale or purple fingers or toes
• Sensitivity to the sun
• Swelling in legs or around eyes
• Mouth ulcers
• Swollen glands
• Feeling very tired

Lupus is a lifelong disease that can affect many parts of your life. But, many people with lupus live long, healthy lives. You can take steps to control your symptoms, prevent lupus flares, and cope with the challenges of lupus.

What can I do to control my lupus symptoms?

The best way to keep your lupus under control is by following your treatment plan and taking care of yourself. These steps can help.

• Learn how to tell that a flare is coming.
• See your doctors regularly.
• Limit the time you spend in the sun and in fluorescent and halogen light.
• Get enough sleep and rest.
• Build a support system made up of people you trust and can go to for help.

Despite your best efforts to follow your treatment plan and take good care of yourself, you may have times when your lupus symptoms are worse. Talk to your doctor about ways to relieve symptoms when this happens.

What are lupus flares?

The times when your symptoms get worse and you feel sick are called flares. Flares can come and go. You may have swelling and rashes one week and no symptoms the next. Sometimes flares happen without clear symptoms and are seen only with laboratory tests.
Some flares are mild, but others are serious and require medical care.

How can I tell if a lupus flare is coming?

Lupus flares most often have warning signs. You can help prevent flares or make them less severe if you can spot the warning signs and get treatment quickly. Before a flare, your symptoms might get worse, or you might get new signs and symptoms, such as:

• Feeling more tired
• Pain
• Rash
• Fever
• Stomach ache
• Severe headache
• Dizziness

What are some triggers for lupus flares?

Common triggers include:

• Overwork and not enough rest
• Being out in the sun or having close exposure to fluorescent or halogen light
• Infection
• Injury
• Stopping your lupus medicines
• Other types of medicines

Even if you take medicine for lupus, you may find that some things trigger a flare. For instance, your symptoms may still flare after you’ve been out in the sun or after a hard day at work, even if you are taking your lupus medicine.

There is no way to know if a flare will be mild or serious. Mild or moderate flares may cause only a rash or more joint pain. But severe flares can damage organs in the body, including fluid buildup around your heart and kidney disease.

Call your doctor if you get the warning signs of a flare. Your doctor may want to adjust your medicine or treatment plan.

Should I change what I eat because I have lupus?

Maybe. You may have to change what you eat based on your symptoms or treatment plan. Ask your doctor if you need to eat special foods or limit other foods because of your lupus.

• If you develop hyperlipidemia (high level of fats in the blood) because of your lupus, you may need to follow a low-fat eating plan.
• If steroids and other medicines cause you to gain weight, you may want to follow a low-calorie eating plan.
• Because people with lupus need to avoid the sun, you may lack vitamin D. Your doctor or nurse may advise you to take a vitamin.

Learn more about healthy eating.

Can I get vaccines if I have lupus?

Yes, you can get many vaccines, but not all. Vaccines that do not contain live viruses are safe for people with lupus. Lupus also raises your risk for infections like the flu or pneumonia, so your doctor will likely recommend getting the flu shot and pneumonia vaccines.

Vaccines that are safe for people with lupus include:

• The flu shot (Make sure you request the flu shot and not the nasal spray. The nasal spray has a live form of the virus that is not recommended for people with lupus or anyone living with you.)
• Pneumonia vaccine
• Human papillomavirus (HPV) vaccine
• Tetanus, diphtheria, and acellular pertussis (Td/Tdap) vaccine

Vaccines with live viruses, and that may not be safe for people with lupus, include:

• Nasal spray vaccine for the flu
• Varicella (chickenpox) vaccine
• Herpes Zoster (Shingles) vaccine
• Measles, Mumps, Rubella (MMR) vaccine

However, some people with lupus have no problems when they get vaccines with live viruses. Talk to your doctor about what is best for you.

What can I do to cope with lupus?

Dealing with a chronic disease like lupus can be challenging. Concerns about your health and the effects of lupus on your work and family life can be stressful. Talk to your doctor and others about your symptoms and feelings. You also may want to consider counseling or joining a support group. Many people find it helpful to talk to others who have similar experiences.

Lupus is an autoimmune condition that affects the skin, tissues, joints and organs. When you have lupus, your immune system can’t tell the difference between harmful bacteria and your body’s own healthy cells, so it attacks the healthy cells. Lupus symptoms may include swollen joints, chest pain, fever, chronic pain, “butterfly” rashes and weak bones.

A lupus diet, when used with medications, can improve your symptoms and quality of life. As a rule, you should aim for a well-balanced diet, complete with lots of fruits, veggies, low-fat dairy and protein. Here are just a few of the foods you can include in your diet:

• Fatty Fish, Nuts and Seeds: Lupus is an inflammatory disease, so it’s important to consume foods that have anti-inflammatory properties. Protein aids in the healing process, while Omega-3 decreases inflammation in the body.
• Fresh Fruits: Fruits that are rich in antioxidants can strengthen your immune system and help your body fight off the harmful bacteria intent on destroying your healthy cells.
• Low-Fat or Fat-Free Dairy: The most common lupus treatment is steroids and while this medication eases many lupus symptoms, it can also weaken your bones and increase your risk of fractures. The best way to combat this side effect is to add low-fat or fat-free dairy to your diet.

There are also some foods to avoid with lupus. Some foods are known for causing “lupus flares,” (i.e. fatigue, muscle pain, joint stiffness, chest pain, inflammation, abnormal test results, etc.) and should be removed from your lupus diet. These foods include:

• Alfalfa sprouts
• Garlic
• Saturated and trans fats
• Nightshade veggies like potatoes and tomatoes
• Artificial sweeteners
• Large quantities of sugar and salt

Adopting a diet that is rich in anti-inflammatory foods could make a world of difference in your life. Also, remember to consult with your doctor before beginning any diet or exercise program.

What is lupus?

Lupus is an autoimmune disease, a disorder in which the body attacks its own healthy cells and tissues. As a result, various parts of the body – such as the joints, skin, kidneys, heart, and lungs – can become inflamed and damaged. There are many different kinds of lupus. Systemic lupus erythematosus (SLE) is the form of the disease that is commonly referred to as lupus.

People with lupus can have a wide range of symptoms. Some of the most commonly reported symptoms are fatigue, painful or swollen joints, fever, skin rashes, and kidney problems. Typically, these symptoms come and go. When symptoms are present in a person with the disease, it is known as a flare. When symptoms are not present, the disease is said to be in remission.

We know that many more women than men have lupus. Lupus is more common in African American women than in white women and is also more common in women of Hispanic, Asian, and Native American descent. African American and Hispanic women are also more likely to have active disease and serious organ system involvement. Unfortunately, there is no cure for the disease.

What is osteoporosis?

Osteoporosis is a condition in which the bones become less dense and more likely to fracture. Fractures from osteoporosis can result in significant pain and disability. In the United States, more than 53 million people either already have osteoporosis or are at high risk due to low bone mass.

Risk factors for developing osteoporosis include:

• Thinness or small frame.
• Family history of the disease.
• Being postmenopausal and particularly having had early menopause.
• Abnormal absence of menstrual periods (amenorrhea).
• Prolonged use of certain medications, such as those used to treat lupus, asthma, thyroid deficiencies, and seizures.
• Low calcium intake.
• Lack of physical activity.
• Smoking.
• Excessive alcohol intake.

Osteoporosis often can be prevented. It is known as a “silent disease” because, if undetected, bone loss can progress for many years without symptoms until a fracture occurs. Osteoporosis has been called a childhood disease with old age consequences because building healthy bones in youth helps prevent osteoporosis and fractures later in life. However, it is never too late to adopt new habits for healthy bones.

The link between lupus and osteoporosis

Studies have found an increase in bone loss and fracture in individuals with SLE. Individuals with lupus are at increased risk for osteoporosis for many reasons. To begin with, the glucocorticoid medications often prescribed to treat SLE can trigger significant bone loss. In addition, pain and fatigue caused by the disease can result in inactivity, further increasing osteoporosis risk. Studies also show that bone loss in lupus may occur as a direct result of the disease. Of concern is the fact that 90 percent of the people affected with lupus are women, a group already at increased risk for osteoporosis.

Osteoporosis management strategies

Strategies for the prevention and treatment of osteoporosis in people with lupus are not significantly different from the strategies for those who do not have the disease.

Nutrition. A well-balanced diet rich in calcium and vitamin D is important for healthy bones. Good sources of calcium include low-fat dairy products; dark green, leafy vegetables; and calcium-fortified foods and beverages. Supplements can help ensure that you get adequate amounts of calcium each day, especially in people with a proven milk allergy. The Institute of Medicine recommends a daily calcium intake of 1,000 mg (milligrams) for men and women up to age 50. Women over age 50 and men over age 70 should increase their intake to 1,200 mg daily.

Vitamin D plays an important role in calcium absorption and bone health. Food sources of vitamin D include egg yolks, saltwater fish, and liver. Many people obtain enough vitamin D naturally, but some individuals may need vitamin D supplements to achieve the recommended intake of 600 to 800 IU (International Units) each day.

Exercise. Like muscle, bone is living tissue that responds to exercise by becoming stronger. The best activities for your bones are weight-bearing and resistance exercises. Weight-bearing exercises force you to work against gravity. They include walking, climbing stairs, and dancing. Resistance exercises – such as lifting weights – can also strengthen bones

Exercising can be challenging for people with lupus who are affected by joint pain and inflammation, muscle pain, and fatigue. However, regular exercise, such as walking, may help prevent bone loss and provide many other health benefits.

Healthy lifestyle. Smoking is bad for bones as well as the heart and lungs. Women who smoke tend to go through menopause earlier, resulting in earlier reduction in levels of the bone-preserving hormone estrogen and triggering earlier bone loss. In addition, people who smoke may absorb less calcium from their diets. Alcohol also can have a negative effect on bone health.

Bone density test. A bone mineral density (BMD) test measures bone density at various parts of the body. This safe and painless test can detect osteoporosis before a fracture occurs and predict a person’s chances of fracturing in the future. Lupus patients, particularly those receiving glucocorticoid therapy for 2 months or more, should talk to their doctors about whether they might be candidates for a bone density test. The BMD test can help determine whether medication should be considered.

Medication. Like lupus, osteoporosis is a disease with no cure. However, several medications are available for the prevention and/or treatment of osteoporosis, including: bisphosphonates; calcitonin; estrogen (hormone therapy); estrogen agonists/antagonists (also called selective estrogen receptor modulators or SERM); parathyroid hormone (PTH) analog; parathyroid hormone-related protein (PTHrp) analog; RANK ligand (RANKL) inhibitor; and tissue-selective estrogen complex (TSEC).

Lupus (also known as systemic lupus erythematosus) is a chronic disorder that can affect many organs and systems in the body, including the brain and nerves. In lupus, the immune system that normally protects the body against infections and disease attacks healthy tissue, causing inflammation and other damage. Neurological complications from lupus can include:

• Headache
• Mild cognitive dysfunction
• Damage to the peripheral nerves that carry signals between the brain and spinal cord and to the rest of the body
• Seizures
• Personality changes
• Stroke
• Dizziness

Lupus can also affect other parts of the body, including the joints, skin, kidneys, lungs, heart, and blood vessels. There is no cure for lupus and treatment is symptomatic, such as aspirin and other nonsteroidal anti-inflammatory medications, corticosteroids, and immunosuppressive drugs.

Lupus nephritis is a kidney disorder that is a complication of systemic lupus erythematous (SLE), commonly known as lupus. The symptoms of lupus nephritis include blood in the urine, a foamy appearance to the urine, high blood pressure, and swelling in any part of the body. This condition typically occurs in people aged 20 to 40 years. Treatment may involve medications to suppress the immune system, dialysis, or a kidney transplant.

Women with lupus can safely get pregnant and most will have normal pregnancies and healthy babies. However, all women with lupus who get pregnant are considered to have a “high risk pregnancy.” This means that problems during pregnancy may be more likely for women with lupus. It doesn’t mean there will definitely be problems.

I have lupus and want to have a baby. Is it safe for me to get pregnant?

Yes. Women with lupus can safely become pregnant. If your disease is under control, pregnancy is unlikely to cause flares. However, you will need to start planning for pregnancy well before you get pregnant.

• Your disease should be under control or in remission for six months before you get pregnant. Getting pregnant when your lupus is active could result in miscarriage, stillbirth, or other serious health problems for you or your baby.
• Pregnancy is very risky for certain groups of women with lupus. These include women with high blood pressure, lung disease, heart failure, chronic kidney failure, kidney disease, or a history of preeclampsia. It also may include women who have had a stroke or a lupus flare within the past six months.

You will need to find an obstetrician (a doctor who is specially trained to care for women during pregnancy) who manages high-risk pregnancies and who can work closely with your regular doctor.

How can I tell if the changes in my body are normal during pregnancy or a sign of a flare?

You may not be able to tell the difference between changes in your body due to pregnancy and warning signs of a lupus flare. Tell your doctor about any new symptoms. You and your doctor can figure out whether your symptoms are because of your pregnancy or your lupus. This way, you can help prevent or control any flares that do happen.

How does pregnancy affect lupus?

Pregnant women with lupus have a higher risk for certain pregnancy complications than women who do not have lupus. You may also have other problems that happen during pregnancy.

• You may get flares during pregnancy. The flares happen most often in the first or second trimester. Most flares are mild. But some flares require medicine right away or may cause you to deliver early. Always call your doctor right away if you get the warning signs of a lupus flare.
• About 2 in 10 pregnant women with lupus get preeclampsia, a serious condition that must be treated right away. The risk of preeclampsia is higher in women with lupus who have a history of kidney disease. If you get preeclampsia, you might notice sudden weight gain, swelling of the hands and face, blurred vision, dizziness, or stomach pain. You might have to deliver your baby early.
• Pregnancy can raise your risk for other problems, especially if you take corticosteroids. These problems include high blood pressure, diabetes, and kidney problems. Good nutrition during pregnancy can help prevent these problems during pregnancy. Regular doctor visits can help find problems like these early so they can be treated to keep you and your baby as healthy as possible.

I have lupus and am pregnant. Will my baby be healthy?

Most likely, yes. Most babies born to mothers with lupus are healthy.

Rarely, infants are born with a condition called neonatal lupus. Certain antibodies found in the mother can cause neonatal lupus. At birth, an infant with neonatal lupus may have a skin rash, liver problems, or low blood cell levels.

Infants with neonatal lupus can develop a serious heart defect called congenital heart block. But, in most babies, neonatal lupus goes away after three to six months and does not come back.

Your doctor will test for neonatal lupus during your pregnancy. Treatment can also begin at or before birth.

Can I breastfeed if I have lupus?

Yes. Breastfeeding is possible for mothers with lupus. However, some medicines can pass through your breastmilk to your infant. Talk to your doctor or nurse about whether breastfeeding is safe with the medicines you use to control your lupus.

You can enter your medicine into the LactMed® database to find out if your medicine passes through your breastmilk and any possible side effects for your nursing baby. Learn more about breastfeeding.