About 200,000 adults in the United States are affected by lupus. Lupus is a chronic autoimmune disease, a lifelong condition in which a person’s immune system attacks its own tissues. It may be mild, moderate, or severe. And although it has no known cure, there are ways to treat and manage lupus and improve patients’ quality of life.
Karen Costenbader, MD, MPH, is a Mass General Brigham rheumatologist and director of the Lupus Center at Brigham and Women’s Hospital. Below, she answers common questions about lupus, its symptoms, and ways to manage the condition.
“Lupus is sometimes called the ‘chameleon of conditions,’ as it often masquerades as other diseases and can be hard to diagnose,” says Dr. Costenbader. “It can affect many different body systems, including your brain, heart, lungs, kidneys, skin, joints, and blood.”
According to Dr. Costenbader, there’s no one specific cause of lupus. Typically, it’s caused by a combination of genetic, environmental, lifestyle, and behavioral factors. Both men and women can develop lupus; however, most cases of lupus occur in women. And while it can affect people of any age, it’s most likely to show up between the ages of 15 and 45.
“There are thousands of potential symptoms of lupus,” explains Dr. Costenbader. They can be grouped into two big categories: symptoms patients experience that aren’t specific to lupus and lupus-specific symptoms.
Symptoms that aren’t specific to lupus may include:
Fatigue or feeling run down
Lupus-specific symptoms include:
Specific types of rashes—most notably a red, butterfly-shaped rash that develops over the nose and cheeks
Sensitivity to light or sun
Inflammation in the brain, heart, lungs, kidneys, joints, skin, or blood vessels
Although lupus won’t go away on its own, there are many options available that can help patients manage their disease and improve their quality of life.
Typically, health care providers start lupus patients on an anti-malarial medication called hydroxychloroquine. They also may use steroid-sparing medications that patients can take long term to manage their disease.
As Dr. Costenbader explains, lupus treatment is about more than symptom management. “Our goal isn’t just to find the right treatment for the right patient, but to actually hit the bulls-eye of remission and keep the disease from heating up or flaring up over time,” she says.
And the breadth of treatment options is growing all the time. “Lupus treatments are fast evolving,” says Dr. Costenbader. “We’ve had new treatments approved by the Food and Drug Administration just in the past 2 years—and more are on the horizon.”
“Lupus comes and goes in periods of flares and remission,” explains Dr. Costenbader. Flares are times when a person’s symptoms feel worse and/or more disruptive than they usually do. Flares typically come and go; they may be mild and pass on their own or require treatment from a medical professional. Unfortunately, there’s no way to predict how severe a flare will be before it happens.
Many people with lupus experience warning signs before a flare. This can look like:
A headache or stomachache
“It’s important to note what may lead to a flare in your lupus,” explains Dr. Costenbader. “Some people have photosensitivity, which means after they’ve been in the sun, they’ll have a flare of the disease with worse symptoms and disease activity. For those people, we counsel them to wear sunscreen and sun-protective clothing, and to stay out of the sun.”
Lupus flares can be caused by triggers other than sunlight, too. These may include, but aren’t limited to:
Not taking your medications regularly
Exposure to fluorescent light or halogen light
Pushing your body too hard without adequate rest
Lupus flares can vary in length. Some may last several days; others may span weeks or more.
When lupus flares up—or if you believe you have experienced a warning sign of a flare—call your rheumatologist. It’s important to figure out if you are experiencing a lupus flare, or something else—such as a cold or flu.
If you are experiencing a flare, your rheumatologist may be able to offer other recommendations or treatment options to help you through.
In addition to your provider’s recommendations, there are some things you can do to get through a lupus flare. They include:
Increased rest and relaxation—both body and mind
Taking your medications as directed
Asking for help from trusted loved ones and support persons