Living with Lupus

If you have systemic lupus erythematosus (S.L.E.), you are not alone. An estimated 1.5 million Americans  have this serious chronic illness.

In lupus, the body's immune system becomes overactive and forms  antibodies that target and damage different organs and tissues such as the skin, heart, kidneys, blood, brain, and joints. A lot of the damage from lupus is caused by the swelling and increased heat of inflammation.

Some people have mild lupus, in which the body makes a small attack on just one or two  parts of the body. Other people have very serious and life-threatening lupus, in which the body has a  hard time continuing to function.

Problems with lupus tend to come and go over time, and the  symptoms are often not clear. Because of these starts (called flares) and stops (quieter disease phases called remissions), lupus can be hard to diagnose. There is no single laboratory test to prove that a  person has this complicated illness.What causes lupus? Researchers are hunting for clues to this mystery. Most likely, lupus develops when a person inherits certain genes from their parents, and then factors in the environment such as infection from a virus, exposure to sunlight, extreme stress, or hormone surges trigger the disease. Lupus is not infectious, meaning that a person can’t “catch” lupus from someone else.

Who gets lupus?
While lupus can develop in men or women, it is much more common in women. Most get the disease  during their childbearing years. African Americans are three times more likely to get lupus than are Caucasian individuals, and also more likely to have disease that is severe. Other groups that get lupus  more frequently are Asian-American, Latina/Hispanic, and Native American women.

How is lupus  diagnosed?
Many people suffer from lupus for months or years without a diagnosis. Not only do the symptoms of lupus come and go and often look like those of other illnesses, but at this point, no single test can  prove that a person has lupus. To make a diagnosis, a doctor needs to ask detailed questions about  medical history, do a careful physical examination, and take blood and urine for testing to get a picture  of the level of inflammation in the body, and immune system function.

What can be done to treat lupus?
There is no cure for lupus, and everyone has a different experience with it. But an early diagnosis and  the right treatment can help to lessen pain and other symptoms, and lower the risk that organs or  tissues will get damaged. Treatments are given based on how active and widespread the lupus  is—which is why it’s so important to get tested regularly for blood or urine changes that can signal a  flare. Treatments include medicines, stress-relief strategies, healthy diet, physical and emotional rest,   psychotherapy, and avoidance (or protection) from direct sunlight. Some of these approaches can make a very big difference in how a person with lupus feels from day to day.

What medicines are used to treat lupus?
Many people with lupus at some point take prescription corticosteroids (prednisone), anti-malaria  drugs, or other medicines that lessen the immune system’s attack on itself. These powerful drugs can really improve lupus and even protect organs during a flare, but some also have unpleasant side effects. Many people also take overthe-counter nonsteroidal anti-inflammatory drugs (NSAIDs) and acetaminophen, which can make a dramatic difference in lessening stiffness, joint pain, and other  discomforts.

What is the outlook for people with lupus?
There isn’t a cure yet, but every year researchers get better insights into lupus and come closer to uncovering less toxic and more specific treatments. In 1955, only 50 percent of people newly diagnosed with lupus were expected to live more than four years. Today, most people with lupus can look forward to a normal lifespan.

I’m so scared—the doctor just diagnosed me with lupus. What will my life be like?
It is very hard to be diagnosed with a disease that can get better or worse at any point. Living with  lupus means living with uncertainty, and your mind is probably filled with questions:

When will the disease flare?  Will it get in the way of having a family or a regular job?  When will the tiredness stop?

The truth is that no one can tell you what will happen, because everyone with lupus has a different experience. That said, in times of uncertainty, it often helps to focus on things that you can control: how regularly you take your medicines, what you eat, protecting yourself from direct  sunlight.

Use times when you are feeling better to arrange your home and finances in a way that will  make things easier when a flare comes. For example, place lighter kitchen cooking tools where they  won’t strain your aching neck or hands to lift them. Or pre-write bills and address envelopes so that  you can avoid this chore when you’re exhausted.

It’s also your decision whether to find more information and support. The S.L.E. Lupus Foundation and others work hard to make sure that  everyone can learn more about lupus. Support groups meet regularly in many places around the  country and are a lifeline for the hundreds of thousands of people living with this disease. Remember, you are not alone.