FAQs

How is lupus treated?

There is no cure for lupus and its treatment can be a challenge. However, treatment has improved considerably a great deal.

Treatment depends on the type of symptoms you have and how serious they are. Patients with muscle or joint pain, fatigue, rashes and other problems that are not dangerous can receive "conservative" treatment. These options include nonsteroidal anti-inflammatory drugs — referred to as NSAIDs

Nonsteroidal anti-inflammatory drugs. NSAIDs decrease swelling, pain and fever. These drugs include ibuprofen (brand names Motrin, Advil) and naproxen (Naprosyn, Aleve). Some of these NSAIDs can cause serious side effects like stomach bleeding or kidney damage. Always check with your doctor before taking any medications that are over the counter (without a prescription) for your lupus.

Antimalarial drugs. Patients with lupus also may receive an antimalarial medication such as hydroxychloroquine (Plaquenil). Though these drugs prevent and treat malaria, they also help relieve some lupus symptoms, such as fatigue, rashes, joint pain or mouth sores. They also may help prevent abnormal blood clotting.

Corticosteroids and immune suppressants. Patients with serious or life-threatening problems such as kidney inflammation, lung or heart involvement, and central nervous system symptoms need more "aggressive" (stronger) treatment. This may include high-dose corticosteroids such as prednisone (Deltasone and others) and drugs that suppress the immune system. Immune suppressants include azathioprine (Imuran)cyclophosphamide(Cytoxan), and cyclosporine (Neoral, Sandimmune). Recentlymycophenolate (CellCept) has been used to treat severe kidney disease in lupus—referred to as lupus nephritis.

Biologics. New treatment options include drugs called biologics that are already approved for treatment of other rheumatic diseases such as rheumatoid arthritis. Examples are rituximab (Rituxan) and abatacept (Orencia). These two drugs are not approved for treatment of lupus. In 2011, though, the FDA approved a biologic, belimumab (Benlysta), for treatment of mild to moderate (medium severe) SLE. It is the first new drug approved for lupus since 1955.

This exciting treatment advance occurred thanks to research studies in patients—called clinical trials. It provides hope that some of the other drugs that researchers are testing in patients will help lupus. It also underscores the need for patients with lupus to take part in studies.

Combination treatment. Health care providers may combine a few medications to control lupus and prevent tissue damage.

Each treatment has risks and benefits. Most immune-suppressing medications, for instance, may cause major side effects. Side effects of these drugs may include a raised risk of infections as well as nausea, vomiting, hair loss, diarrhea, high blood pressure and osteoporosis (weak bones). Rheumatologists may lower the dose of a drug or stop a medicine because of side effects or when the disease goes into remission. As a result, it is important to receive careful and frequent health exams and lab tests to track your symptoms and change your treatment as needed.

What is lupus?

Lupus is a chronic (long-term) disease that causes inflammation — pain and swelling. It can affect the skin, joints, kidneys, lungs, nervous system and other organs of the body. Most patients feel fatigue and have rashes, arthritis (painful and swollen joints) and fever.

Lupus flares vary from mild to serious. Most patients have times when the disease is active, followed by times when the disease is mostly quiet — referred to as a remission.

How is lupus diagnosed?

Lupus can be hard to detect because it has many symptoms, and they can come on slowly.

Symptoms. People with lupus often have features that are not specific to lupus. These include fever, fatigue, weight loss, blood clots and hair loss in spots or around the hairline. They may also have heartburn, stomach pain, and poor circulation to the fingers and toes. Pregnant women can have miscarriages.

The American College of Rheumatology has a list of symptoms and other measures that doctors can use as a guide to decide if a patient with symptoms has lupus. If your doctor finds that you have at least four of these problems, and finds no other reason for them, you may have lupus:

  • Rashes:
    • butterfly-shaped rash over the cheeks — referred to as malar rash
    • red rash with raised round or oval patches — known as discoid rash
    • rash on skin exposed to the sun
     
  • Mouth sores: sores in the mouth or nose lasting from a few days to more than a month
  • Arthritis: tenderness and swelling lasting for a few weeks in two or more joints
  • Lung or heart inflammation: swelling of the tissue lining the lungs (referred to as pleurisy or pleuritis) or the heart (pericarditis), which can cause chest pain when breathing deeply
  • Kidney problem: blood or protein in the urine, or tests that suggest poor kidney function
  • Neurologic problem: seizures, strokes or psychosis (a mental health problem)
  • Abnormal blood tests:
    • low blood cell counts: anemia, low white blood cells or low platelets
    • positive antinuclear antibody: referred to as ANA and present in nearly all patients with lupus
    • certain antibodies that show an immune system problem: anti-double-strand DNA (called anti-dsDNA), anti-Smith (referred to as anti-Sm) or antiphospholipid antibodies, or a false-positive blood test for syphilis (meaning you do not really have this infection)
     

Lab tests. If your doctor suspects you have lupus from your symptoms, you will need a series of blood tests to confirm that you do have the disease. The most important blood screening test measures ANA, but you can have ANA and not have lupus. Therefore, if you have positive ANA, you may need more specific tests to prove the diagnosis. These blood tests include antibodies to anti-dsDNA and anti-Sm.

The presence of antiphospholipid antibodies can help doctors detect lupus. These antibodies signal a raised risk of certain complications such as miscarriage, difficulties with memory, or blood clots that may lead to stroke or lung injury. Doctors also may measure levels of certain complement proteins (a part of the immune system) in the blood, to help detect the disease and follow its progress.

What are the signs and symptoms of lupus?

Lupus may be hard to diagnose. It’s often mistaken for other diseases. The signs of lupus differ from person to person. Some people have just a few signs; others have more. Common signs of lupus are:

  • Extreme fatigue (feeling tired all the time)
  • Painful or swollen joints
  • Muscle pain or weakness
  • Unexplained fever
  • Chest pain with deep breathing
  • Depression, trouble thinking, and/or memory problems
  • Unusual hair loss (mainly on the scalp)
  • Pale or purple fingers or toes from cold or stress
  • Red rash or color change on the face, often in the shape of a butterfly across the nose and cheeks
  • Sensitivity to the sun
  • Low blood count
  • Swollen glands

Other signs are mouth sores, unexplained seizures (convulsions), “seeing things” (hallucinations), repeated miscarriages, and unexplained kidney problems.

What is a flare?

When symptoms appear, it’s called a “flare.” These signs may come and go. You may have swelling and rashes one week and no symptoms at all the next. You may find that your symptoms flare after you’ve been out in the sun or after a hard day at work.

Even if you take medicine for lupus, you may find that there are times when the symptoms become worse. Learning to recognize that a flare is coming can help you take steps to cope with it. Many people feel very tired or have pain, a rash, a fever, stomach discomfort, headache, or dizziness just before a flare. Steps to prevent flares, such as limiting the time you spend in the sun and getting enough rest and quiet, can also be helpful.

What causes lupus?

 

The immune system is the body's defense system. When healthy, it protects the body by making antibodies (blood proteins) that attack foreign germs and cancers. With lupus, the immune system misfires. Instead of producing protective antibodies, an autoimmune disease begins and makes "autoantibodies," which attack the patient's own tissues. Doctors sometimes refer to this as a "loss of self-tolerance."

As the attack goes on, other immune cells join the fight. This leads to inflammation and abnormal blood vessels (vasculitis). These antibodies then end up in cells in organs, where they damage those tissues.

Why this inflammatory response begins is not clear. It most likely results from a mix of inherited tendencies and things in your environment. These include viruses, sunlight and drug allergies. People with lupus may also have an impaired process for clearing old and damaged cells from the body, which causes an abnormal immune response.

 

Who gets lupus?

Anyone can get lupus. But 9 out of 10 people who have it are women. African American women are three times more likely to get lupus than women of European descent. It’s also more common in Hispanic American/Latina, Asian American, and Native American women.

Both African Americans and Hispanic Americans/Latinas tend to develop lupus at a younger age and have more symptoms at diagnosis (including kidney problems).

They also tend to have more severe disease than women of European descent. For example, African American patients have more seizures and strokes, while Hispanic American/Latina patients have more heart problems. We don’t understand why some people seem to have more problems with lupus than others.

Lupus is most common in women between the ages of 15 and 45. These are roughly the years when most women are able to have babies. Scientists think a woman’s hormones may have something to do with getting lupus. But it’s important to remember that men and older people can get it, too.

It’s less common for children under age 15 to have lupus. One exception is babies born to women with lupus. These children may have heart, liver, or skin problems caused by lupus. With good care, most women with lupus can have a normal pregnancy and a healthy baby.

What will the doctor do?

Go see a doctor or other health professional. He or she will talk to you and take a history of your health problems. Many people have lupus for a long time before they find out they have it. It’s important that you tell your healthcare team about your symptoms. This information, along with a physical examination and the results of laboratory tests, helps a medical professional decide whether you have lupus or something else. A rheumatologist (ROOM-uh-TALL-uh-jist) is a doctor who specializes in treating diseases that affect the joints and muscles, like lupus. You may want to ask your regular healthcare provider for a referral to a rheumatologist. In some cases, a dermatologist, a doctor who specializes in treating diseases that affect the skin, may be involved in diagnosis and treatment. No single test can show that you have lupus. Your healthcare team may have to run several tests and study your medical history. It may take time to diagnose lupus.

Will I get medicine?

Remember that each person has different symptoms. Treatment depends on the symptoms. Your healthcare provider may give you aspirin or a similar medicine to treat swollen joints and fever. Creams may be prescribed for a rash. For more serious problems, stronger medicines are used. Your healthcare team will choose a treatment based on your symptoms and needs.

Always tell your healthcare team if you have problems with your medicines. Let them know if you take herbal or vitamin supplements. Your medicines may not mix well with these supplements. You and your healthcare team can work together to find the best way to treat all of your symptoms.

How can I cope with lupus?

You need to find out what works best for you. You may find that a rheumatologist has the best treatment plan for you. Other health professionals who can help you deal with different aspects of lupus include psychologists, occupational therapists, dermatologists, and dietitians. You might find that doing exercises with a physical therapist makes you feel better. The important thing is to follow up with your healthcare team on a regular basis, even when your lupus is quiet and all seems well.

Dealing with a long-lasting disease like lupus can be hard on your emotions. You might think that your friends, family, and coworkers do not understand how you feel. Sadness and anger are common reactions.

People with lupus have limited energy and must manage it wisely. Ask your healthcare team about ways to cope with fatigue. Most people feel better if they manage their rest and work and take their medicine. If you’re depressed, medicine and counseling can help.

Also:
  • Pay attention to your body
  • Slow down or stop before you’re too tired. Learn to pace yourself. Spread out your work and other activities
  • Don’t blame yourself for your fatigue. It’s part of the disease
  • Consider support groups and counseling. They can help you realize that you’re not alone. Group members teach one another how to cope
  • Consider other support from your family as well as faith-based and other community groups

It’s true that staying healthy is harder when you have lupus. You need to pay close attention to your body, mind, and spirit. Having a chronic disease is stressful. People cope with stress differently. Some approaches that may help are:

  • Staying involved in social activities
  • Practicing techniques such as meditation and yoga
  • Setting priorities for spending time and energy

Exercising is another approach that can help you cope with lupus. Types of exercise that you can practice include the following:

  • Range-of-motion (for example, stretching) exercises help maintain normal joint movement and relieve stiffness. This type of exercise helps maintain or increase flexibility.
  • Strengthening (for example, weightlifting) exercises help keep or increase muscle strength. Strong muscles help support and protect joints affected by lupus.
  • Aerobic or endurance (for example, brisk walking or jogging) exercises improve cardiovascular fitness, help control weight, and improve overall function.
People with long-lasting diseases like lupus should check with their healthcare professional before starting an exercise program. Learning about lupus may also help. People who are well informed and take part in planning their own care report less pain. They also may make fewer visits to the doctor, have more self-confidence, and remain more active. Women who want to start a family should work closely with their healthcare team; for example, doctors, physical therapists, and nurses. Your OB/GYN and your lupus healthcare team should work together to find the best treatment plan for you.