Understanding Lupus

An inflammatory disease that causes your immune system to attack its own tissues.

Lupus is an autoimmune condition where your immune system creates antibodies that attack healthy cells in your body, instead of attacking viruses, bacteria, and other infections. Inflammation from lupus wears away connective tissues in your joints, skin, organs, and other body systems. These inflammation flare-ups usually last for a few weeks, then fade or disappear for extended periods of time.

How Common Is Lupus?

If you’ve been diagnosed with lupus, it may help to know that you are certainly not alone. About 1.5 million people or more in the United States today are affected by this condition. Worldwide, lupus impacts as many as 5 million people. In addition, there are about 16,000 new cases reported in the US each year. Experts point out that these estimates may be low since many lupus cases go unreported, causing the prevalence to be difficult to track.

Lupus OverviewInflammation caused by lupus can affect many different body systems—including your joints. (Source: 123RF)

Who is at Risk for Lupus?

While women make up the majority of lupus sufferers (about 9 out of 10 diagnoses of lupus are women), up to 22% of those affected by lupus are men. In addition, children and teenagers can also be affected. Lupus symptoms typically appear when people are between the ages of 15 and 44.

Genetics also seem to play a role in developing lupus, although researchers are still trying to fully understand the connection and understand how to predict who is at risk. As many as 20% of people diagnosed with lupus have a family member who is impacted by the condition, or will be impacted in the future. Although people from all backgrounds and races can be at risk for lupus, this condition is three times more likely in African-American women, and two times more likely in Hispanic and Asian-American women.

In addition:

  • A woman with no family history of lupus has a 1 in 400 chance of getting the disease.
  • If an immediate family member has lupus, those chances increase to 1 in 25.
  • African-American and Hispanic women without a family history of lupus have about a 1 in 250 chance of getting the disease.

Types of Lupus

Doctors classify lupus into four different categories:

  • Systemic Lupus Erythematosus (SLE) is the most common form of lupus, affecting many different body systems, including the joints, skin, brain, lungs, kidneys and blood vessels.
  • Drug-induced lupus is a side-effect of the heart drugs hydralazine and procainamide, the tuberculosis medication isoniazid, and a few other medications. In most cases, this form of lupus disappears about six months after discontinuing the medication.
  • Cutaneous lupus occurs when the lupus is active only in the skin, usually appearing on areas exposed to sunlight. Sufferers will have rashes and sores, and may lose some hair.
  • Neonatal lupus occurs in babies who have received the immune system antibodies from their mothers. It is uncommon, and most babies born to mothers with lupus never develop the disease.

Lupus Symptoms and Effects

Since lupus can affect almost any tissue, organ, or body system, there are many possible symptoms. This means that no two people with lupus will have the same experiences.

“Lupus continues to be a somewhat difficult disease to diagnose and treat, primarily due to its many potential organ system manifestations and presentations. Therefore, there is no single best treatment, and therapy varies greatly [depending on the] organ system involved,” explains Don Goldenberg, MD, rheumatologist and emeritus professor of medicine at the Tufts University School of Medicine in Boston, MA. He currently serves as adjunct faculty in the Department of Medicine and Nursing at Oregon Health & Science University in Portland, OR.

While there is no cure for lupus, many people successfully manage their symptoms through lifestyle modifications and medications. It’s important to work with your doctor to find the best treatment options that will allow you to live a normal life.

What to Expect with Lupus

For many people with lupus, the condition will be mild, with symptoms coming and going at different points in time. Generally, there will be “flares”—times when the effects of the disease are magnified—and then the symptoms will get better or even completely resolve for a while. While lupus impacts everyone differently, the most common symptoms are fatigue, weight loss, and two or more painful joints, with the pain lasting for many weeks.

The most visible symptom of lupus is usually a rash that extends from cheek to cheek over the bridge of your nose. You may notice rashes on skin exposed to sunlight, and some of your hair may fall out. In some cases, lupus sufferers lose all of their hair.

Lupus also attacks blood cells, and you are likely to experience anemia and clotting disorders. Therefore, your risks of experiencing a stroke or developing blood clots are much higher with lupus. “Kidneys are also affected in 30 to 50% of lupus cases, and this increases the morbidity and mortality,” Dr. Goldenberg says.  Only a minority of lupus patients experience kidney failure today, however.

If you live with lupus, you need to be patient with symptoms that affect your mind. Lupus is likely to affect your hand-eye coordination and may cause mild mental impairments. Some patients have seizures, and some experience short- or long-term paralysis. Because lupus symptoms affect the whole nervous system—not just the brain—you may experience nerve damage in your arms and legs.

Lupus Causes

Medical experts do not know what causes your immune system to unleash antibodies on your healthy cells. However, they believe that a combination of genetics and an environmental cause can trigger the disease in most individuals.

Possible environmental triggers include:

  • pregnancy;
  • ultraviolet light exposure from the sun or lights;
  • drugs that increase your light sensitivity;
  • injury;
  • infection;
  • or emotional or physical stress.

If you’re planning to become pregnant with lupus, it’s important to work closely with your doctor to minimize risks and ensure the safest experience for you and your unborn child.

Living with Lupus

Lupus inflammation can be a painful and challenging disease with many symptoms. Follow your doctor's instructions carefully, and take your medications appropriately. It’s also important to recognize when your lupus is acting up, so you can get in touch with your doctor and treat flare-ups early—with a combination of lifestyle choices and treatments. The good news is that with proper management, “the vast majority of patients have good outcomes,” says Dr. Goldenberg.

-Additional reporting by Lisa Ellis, October 2018

Updated on: 10/19/18
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Diagnosing Lupus