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What Do I Need to Know About Lupus?

If you have been diagnosed with lupus, you will want to know as much as you can about the disease. Lupus is a chronic, autoimmune disease that can damage any part of the body (skin, joints and/or organs inside the body). Normally our immune system produces proteins called antibodies that protect the body from foreign substances, like bacteria and viruses. With lupus, your immune system cannot tell the difference between these foreign invaders and your body's healthy tissues and creates autoantibodies ("auto" means "self") to attack and destroy healthy tissue. These autoantibodies cause inflammation, pain, and damage in various parts of the body.

Lupus is also a disease of flares (the symptoms worsen and you feel ill) and remissions (the symptoms improve and you feel better). Lupus can be mild or serious but should always be treated by a doctor. With good medical care, most people with lupus can lead a full life.

What Causes Lupus?

No one knows what causes lupus. However, scientists believe that hormones, genetics (heredity), and environment are all involved. Hormones regulate many of the body’s functions. In particular, the sex hormone estrogen plays a role in lupus. Men and women both produce estrogen, but estrogen production is much greater in females. However, it does not mean that estrogen, or any other hormone for that matter, causes lupus. While no gene or group of genes has been proven to cause lupus, the disease does appear in certain families. And, although lupus can develop in people with no lupus in their family history, there are likely to be other autoimmune diseases in some family members. Certain ethnic groups (people of African, Asian, Hispanic/Latino, American Indian, or Pacific Island descent) have a greater risk of developing lupus, which may also be related to genes they have in common.
Your genes may increase the chance that you will develop lupus, but scientists believe it takes some kind of environmental trigger to set off the illness or to bring on a flare, such as:

  • ultraviolet rays from the sun or from fluorescent light bulbs
  • sulfa drugs, which make a person more sensitive to the sun
  • penicillin or certain other antibiotic drugs
  • some tetracycline drugs
  • infection
  • a cold or a viral illness
  • exhaustion
  • injury
  • emotional stress
  • anything that causes stress to the body, like surgery, an accident, or pregnancy

Other seemingly unrelated factors can trigger your onset of lupus. Scientists have noted some common triggers among many people who have lupus, including exposure to the sun, an infection, a medication taken to treat an illness, being pregnant, and giving birth.

What Is a Lupus Flare?

The Lupus Foundation of America (LFA) spearheaded a four-year worldwide initiative with more than 120 lupus experts from 11 countries, the pharmaceutical and biotechnology industries, and federal agencies, which resulted in the first-ever global definition of a lupus flare. The development of Lupus Foundation of America Flare Definition (LFA-Flare) helps to overcome long-standing barriers to the development of new, safe, and more tolerable treatments for lupus.

For the past 15 years, many trials of new investigational medicines for lupus have failed to show significant benefits for patients.  A consistent and meaningful definition for a lupus flare is critical to evaluating the effectiveness of treatment over time. The new definition will enable more precise outcome measures for future studies,  such as  the number of flares or the time between flares.  This will have a positive impact on the quality and scientific basis of clinical trials, which are required by the U.S. Food and Drug Administration (FDA) to demonstrate the effectiveness of any new therapy before it can be approved for general use in patients. 

The consensus definition is: A flare is a measurable increase in disease activity in one or more organ systems involving new or worse clinical signs and symptoms and/or lab measurements. It must be considered clinically significant by the assessor and usually there would be at least consideration of a change or an increase in treatment.  

BENLYSTA, the first drug approved to treat lupus in more than 50 years, was approved by the FDA in March of 2011. It is also the first drug developed specifically for lupus since the disease was discovered more than a century ago.

Forms of Lupus

There are several forms of lupus.

Systemic lupus erythematosus is the most common form of lupus, and is what most people mean when they refer to "lupus." Systemic lupus can affect any part of your body, and can be mild or severe. Some of the more serious complications involving major organ systems are:

  • inflammation of the kidneys (lupus nephritis)
  • an increase in blood pressure in the lungs (pulmonary hypertension)
  • inflammation of the heart muscle (myocarditis)
  • hardening of the arteries (coronary artery disease)
  • inflammation of the central nervous system (CNS) and brain
  • inflammation of the brain’s blood vessels

Cutaneous lupus erythematosus is limited to your skin. Although cutaneous lupus can cause many types of rashes and lesions (sores), the most common kind is raised, scaly and red, but not itchy; it is called a discoid rash because the areas of rash are shaped like disks, or circles. Another common example of cutaneous lupus is the rash on the cheeks and across the bridge of the nose, known as the butterfly rash. Hair loss and changes in the pigment, or color, of the skin are also symptoms of cutaneous lupus.
Certain prescription drugs can create a lupus-like disease, called drug-induced lupus. The drugs most commonly connected with drug-induced lupus are hydralazine (used to treat high blood pressure or hypertension), procainamide (used to treat irregular heart rhythms), and isoniazid (a drug used to treat tuberculosis). The lupus-like symptoms usually disappear within six months after the medications are stopped.

Neonatal lupus is a rare condition that affects babies of women who have lupus. At birth, the baby may have a skin rash, liver problems, or low blood cell counts, but all of these symptoms go away completely after several months with no lasting effects. A very small percentage of babies with neonatal lupus may also have a serious heart defect; however, most babies of mothers with lupus are entirely healthy.

What Are the Symptoms of Lupus?

Because lupus can affect so many different organs, there is wide range of symptoms that can occur. The most common symptoms of lupus, which are the same for females and males, are:

  • extreme fatigue (tiredness)
  • headaches
  • painful or swollen joints
  • fever
  • anemia (caused by low numbers of red blood cells or hemoglobin, or low total blood volume)
  • swelling (edema) in feet, legs, or around eyes
  • pain in the chest on deep breathing (pleurisy)
  • butterfly-shaped rash across the cheeks and nose
  • sun- or light-sensitivity (photosensitivity)
  • hair loss
  • blood-clotting problems
  • fingers turning white and/or blue in the cold (Raynaud’s phenomenon)
  • ulcers in mouth or nose

What Kinds of Doctors Treat Lupus?

Most people with lupus will be treated by a rheumatologist, who is a specialist in the diseases of joints and muscles. However, if you have rashes or lesions from cutaneous lupus you will see a dermatologist, a specialist in diseases that affect the skin (including the scalp and the mouth). Because lupus can cause damage to any part of the body, other specialists may be necessary, such as a nephrologist, who specializes in kidney problems; a cardiologist, who specializes in heart problems; a neurologist, who specializes in problems that affect the brain and nervous system; or an perinatologist, who specializes in high-risk pregnancies.

Facts About Lupus

  • Lupus is not contagious.
  • Lupus is not like or related to cancer.
  • Lupus is not like or related to HIV (Human Immune Deficiency Virus) or AIDS (Acquired Immune Deficiency Syndrome).
  • In the United States alone it is believed that at least 1.5 million people -- women, men, teens, and children -- have lupus. More than 16,000 new cases are reported across the country each year.
  • Lupus strikes mostly women of childbearing age (15-44). However, men, children and teenagers develop lupus, too.
  • Women of color are 2-3 times more likely to develop lupus.
  • People of all races and ethnic groups can develop lupus.

The Lupus Foundation of America, Philadelphia Tri-State Chapter is pleased to provide print materials with information about lupus to you free of charge.

Información acerca del lupus en Español

Related Links
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National Resource Center on Lupus

A living collection of up-to-date resources and information on lupus.

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Lupus Connect

An online lupus community where individuals with lupus can engage with others like them.

Lupus Connect

Want to talk to someone? Send your contact info to [email protected].

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