The Essence of Lupus

Introduction to the symptoms and treatment options

fatigued woman holding her head
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Lupus is a complex autoimmune disease. In people with lupus, the immune system turns against parts of the body it is designed to protect. Lupus can affect many parts of the body, including the organs.If you're unsure of whether you have Lupus, take this quiz & talk to your doctor!​

Types of Lupus

Systemic lupus erythematosus (SLE) is the form of the disease that most people are think of when they speak of lupus.

Systemic implies that the disease can affect many parts of the body, including organs. Symptoms may be mild or severe. Typically, the first symptoms of systemic lupus erythematosus develop between the ages of 15 and 45 years, but it does affect people younger and older too.

Discoid lupus erythematosus is a chronic skin disorder characterized by a red, raised rash which appears on the face, scalp, or other skin areas. The raised rash can become thick and scaly, possibly even causing scarring. The rash can linger for days, years, and possibly recur. Some, but not most, people diagnosed with discoid lupus will develop systemic lupus erythematosus down the road.

Subacute cutaneous lupus erythematosus is a type of lupus with skin lesions that appear on parts of the body that have been sun-exposed. The lesions associated with this type of lupus do not cause scarring.

Drug-induced lupus, as its name suggests, is a form of lupus caused by medications.

Many different drugs can cause drug-induced lupus. While symptoms of drug-induced lupus are much like those associated with systemic lupus, they typically disappear the drug is stopped. It's also important to note that the kidneys and brain are rarely involved.

Neonatal lupus is a rare type of lupus that can occur in newborn babies of women with systemic lupus erythematosus, Sjögren's syndrome, or no disease.

Women with systemic lupus or other autoimmune disorders should consult with their doctor while pregnant. It's possible for doctors to identify mothers at high risk for complications.

Sign and Symptoms of Lupus

Lupus is characterized by variable symptoms—in other words, it's not the same for everyone. Lupus symptoms can range from mild to severe and the symptoms can go away as well as recur. Painful or swollen joints (arthritis), unexplained fever, and fatigue are among the most common symptoms. A characteristic red skin rash, known as the butterfly or malar rash, may appear across the nose and cheeks.

Rashes may also occur on the face and ears, upper arms, shoulders, chest, and hands. Many people with lupus are photosensitive (sensitive to sunlight) so rashes often appear on areas of the skin exposed to skin and worsen after exposure.

  • Lupus Screening Quiz

List of Common Symptoms of Lupus

Other symptoms of lupus include chest pain, hair loss, anemia (a decrease in red blood cells), mouth ulcers, and pale or purple fingers and toes from cold and stress. Some people also experience headaches, dizziness, depression, confusion, or seizures.

Systemic Effects

The following systems in the body also can be affected by lupus.

Kidneys - Inflammation of the kidneys (nephritis) can impair their ability to get rid of waste products and toxins from the body effectively. There is usually no pain associated with kidney involvement.

Lungs - Some people with lupus develop pleuritis, an inflammation of the lining of the chest cavity.

There can be chest pain and breathing difficulties. Lupus patients may also develop pneumonia.

Central nervous system - Lupus affects the brain or central nervous system in some patients. Headaches, dizziness, memory disturbances, vision problems, seizures, stroke, or changes in behavior can result.

Blood vessels - Blood vessels may become inflamed (vasculitis), affecting circulation. The inflammation may be mild or severe.

Blood - Lupus patients may develop anemia, leukopenia (a decreased number of white blood cells), or thrombocytopenia (a decrease in the number of platelets in the blood, which assist in clotting). Some people with lupus may have an increased risk for blood clots.

Heart - In some people with lupus, inflammation can affect the heart (myocarditis and endocarditis) or the membrane that surrounds it (pericarditis), causing chest pains or other symptoms. Lupus can also increase the risk of atherosclerosis (hardening of the arteries).

Diagnosing Lupus

Let's face it, diagnosing lupus is difficult. It may take much longer than you anticipated for doctors to piece together the symptoms and offer an accurate diagnosis. Making a correct diagnosis of lupus requires knowledge and awareness on the part of the doctor and good communication on the part of the patient. Giving the doctor a complete, accurate medical history (for example, what health problems you have had and for how long) is critical to the process of diagnosis.

This information, along with a physical examination and the results of laboratory tests, helps the doctor consider other diseases that may mimic lupus, or determine if the patient truly has the disease. Reaching a diagnosis may take time as new symptoms appear.

No single test can determine whether a person has lupus, but several laboratory tests may help the doctor to make a diagnosis. The most useful tests identify certain autoantibodies often present in the blood of people with lupus. For example, the antinuclear antibody (ANA) test is commonly used to look for autoantibodies that react against components of the nucleus of the body's cells. Most people with lupus test positive for ANA; however, there are a number of other causes of a positive ANA besides lupus, including infections, other autoimmune diseases, and occasionally as a finding in healthy people. The ANA test simply provides another clue for the doctor to consider in making a diagnosis.

In addition, there are blood tests for individual types of autoantibodies that are more specific to people with lupus, although not all people with lupus test positive for these and not all people with these antibodies have lupus. These antibodies include anti-DNA, anti-Sm, anti-RNP, anti-Ro (SSA), and anti-La (SSB).

The doctor may use these antibody tests to help make a diagnosis of lupus.

Some tests are used less frequently but may be helpful if the cause of a person's symptoms remains unclear. The doctor may order a biopsy of the skin or kidneys if those body systems are affected. Some doctors may order a test for anticardiolipin (or antiphospholipid) antibody. The presence of this antibody may indicate increased risk for blood clotting and increased risk for miscarriage in pregnant women with lupus. Again, all these tests merely serve as tools to give the doctor clues and information in making a diagnosis. The doctor will look at the entire picture-medical history, symptoms, and test results-to determine if a person has lupus.

Other laboratory tests are used to monitor the progress of the disease once it has been diagnosed. A complete blood count, urinalysis, blood chemistries, and the erythrocyte sedimentation rate (ESR) test can provide valuable information. Another common test measures the blood level of a group of substances called complement.

People with lupus often have increased ESRs and low complement levels, especially during flares of the disease. X rays and other imaging tests can help doctors see the organs affected by SLE.

Diagnostic Tools for Lupus

  • Skin biopsy
  • Kidney biopsy

Lupus Doctors

Diagnosing and treating lupus are often a team effort between the patient and several types of health care professionals. A person with lupus can go to his or her family doctor or internist, or can visit a rheumatologist. A rheumatologist is a doctor who specializes in rheumatic diseases (arthritis and other inflammatory disorders, often involving the immune system).

Clinical immunologists (doctors specializing in immune system disorders) may also treat people with lupus. As treatment progresses, other professionals often help. These may include nurses, psychologists, social workers, nephrologists (doctors who treat kidney disease), hematologists (doctors specializing in blood disorders), dermatologists (doctors who treat skin disease), and neurologists (doctors specializing in disorders of the nervous system).

Lupus Treatment Options

Lupus treatment plans are tailored to the individual's needs and may change over time. The range and effectiveness of treatments for lupus have increased, giving doctors more choices in how to manage the disease. It is important for the patient to work closely with the doctor and take an active role in managing the disease. Once lupus has been diagnosed, the doctor will develop a treatment plan based on the patient's age, sex, health, symptoms, and lifestyle.

In developing a treatment plan, the doctor has several goals:

  • to prevent flares
  • to treat flares when they do occur
  • to minimize organ damage and complications

The doctor and patient should reevaluate the plan regularly to ensure it is as effective as possible.

NSAIDs: For people with joint or chest pain or fever, drugs that decrease inflammation, called NSAIDs, are used. While some NSAIDs, such as ibuprofen and naproxen, are available over-the-counter, a doctor's prescription is needed for others. NSAIDs may be used alone or in combination with other types of drugs to control pain, swelling, and fever. Even though some NSAIDs may be purchased without a prescription, it is important that they be taken under a doctor's direction. Common side effects of NSAIDs can include:

  • stomach upset
  • heartburn
  • diarrhea
  • fluid retention

Some people also develop liver, kidney, cardiovascular, or even neurological complications, making it especially important to stay in close contact with the doctor while taking these medications.

Antimalarials: Antimalarials are another type of drug commonly used to treat lupus. These drugs were originally used to treat malaria, but doctors have found that they also are useful for lupus. A common antimalarial used to treat lupus is hydroxychloroquine (Plaquenil).

It may be used alone or in combination with other drugs and generally is used to treat:

  • fatigue
  • joint pain
  • skin rashes
  • lung inflammation

Studies have found that continuous treatment with antimalarials may prevent flares from recurring. Side effects of anti-malarials can include:

  • stomach upset
  • damage to the retina of the eye (rare)

Corticosteroids: The mainstay of lupus treatment involves the use of corticosteroids, such as:

Corticosteroids are related to cortisol, a natural anti-inflammatory hormone. They work by rapidly suppressing inflammation. Corticosteroids can be given:

  • by mouth
  • in creams applied to the skin
  • by injection

Because they are potent drugs, the doctor will seek the lowest dose with the greatest benefit. Doctors sometimes give very large amounts of corticosteroid by vein over a brief period of time (days) ("bolus" or "pulse" therapy). Short-term side effects of corticosteroids include:

  • swelling
  • increased appetite
  • weight gain

These side effects generally stop when the drug is stopped. It is dangerous (even life threatening) to stop taking corticosteroids suddenly, so it is very important that the doctor and patient work together in changing the dose.

Long-term side effects of corticosteroids can include:

  • stretch marks
  • weakened or damaged bones (osteoporosis and osteonecrosis)
  • high blood pressure
  • damage to the arteries
  • high blood sugar (diabetes)
  • infections
  • cataracts

Typically, the higher the dose and the longer they are taken, the greater the risk and severity of side effects. People with lupus who are using corticosteroids should talk to their doctors about taking supplemental calcium and vitamin D or medications to reduce the risk of osteoporosis.

Immunosuppressives: For some patients whose kidneys or central nervous systems are affected by lupus, a type of drug called an immunosuppressive may be used. Immunosuppressives, such as cyclophosphamide (Cytoxan) and mycophenolate mofetil (CellCept), restrain the overactive immune system by blocking the production of immune cells. These drugs may be given by mouth or by infusion (dripping the drug into the vein through a small tube). Side effects may include:

The risk for side effects increases with the length of treatment. As with other treatments for lupus, there is a risk of relapse after the immunosuppressives have been stopped.

DMARDs: In some patients, methotrexate, a disease-modifying antirheumatic drug, may be used to help control the disease.

Benlysta for Lupus

Benlysta (belimumab) was approved on March 9, 2011 by the FDA for the treatment of active, autoantibody-positive lupus in patients who are receiving standard therapy including corticosteroids, antimalarials, immunosuppressives, and NSAIDs (nonsteroidal anti-inflammatory drugs). Benlysta is administered as an intravenous infusion. It is the first drug to target B-lymphocyte stimulator (BLyS) protein which should decrease the number of abnormal B cells -- thought to be a problem in lupus.

Working closely with the doctor helps ensure that treatments for lupus are as successful as possible. Because some treatments may cause harmful side effects, it is important to report any new symptoms to the doctor promptly. It is also important not to stop or change treatments without talking to the doctor first.

Alternative Treatments

Because of the nature and cost of the drugs used to treat lupus and the potential for serious side effects, many patients seek other ways of treating the disease. Some alternative approaches people have tried include:

Although these methods may not be harmful in and of themselves, and may be associated with symptomatic or psychosocial benefit, no research to date shows that they affect the disease process or prevent organ damage.


Handout on Health - Lupus. NIH Publication No. 09-4178

Primer of the Rheumatic Diseases. Thirteenth Edition. Arthritis Foundation.

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