Understanding and managing lupus

Jodi Dingle, MD

Pediatric Rheumatology

Lupus is a complex health condition that often begins in the teenage years. Jodi Dingle, MD, explained how to recognize lupus and offered tips for how to support a loved one dealing with the chronic condition.

What is lupus?

Lupus is an autoimmune disease – meaning that your immune system, which usually works to fight off infection, attacks your own organs instead. Lupus can affect almost any part of your body and anyone can develop lupus. However, it happens more often in women and certain minority groups, including African Americans, Asians, Hispanics/Latinos, Native Americans and Pacific Islanders.

What causes lupus?

No one knows exactly what causes lupus, but it’s believed that genetic changes predispose you to lupus as it tends to be more common in people who have a family history. There are likely other triggers in the environment as well, such as medications, infections and ultraviolet rays.

What are the signs and symptoms of lupus?

The most common signs and symptoms of lupus include:

• Skin rashes
• Joint pain and swelling
• Inflammation of organs (heart, lungs or kidneys)
• Fatigue

“The rash we see most often is a “butterfly rash” on the cheeks which can be triggered by the sun and lasts for days without going away,” Dr. Dingle said. “Lupus can be challenging to diagnose because of the variety of ways it can affect the body and different organs.”

How can you best manage your symptoms when you have lupus?

Lupus is a chronic disease without a cure, but it can be controlled with medication. It is important to remember to take your medicine every day so the inflammation stays well controlled. The sun can also trigger rashes and inflammation in other parts of the body. Dr. Dingle said making sure you wear sunscreen and stay out of the sun during the hottest part of the day is important. And let your rheumatologist know if you have any new symptoms.

How is lupus treated?

There are many medications used to treat lupus, depending on how lupus is affecting your body. Almost all lupus patients are on a medication called hydroxychloroquine, which helps control the disease.

“There is new research being done all the time, with new exciting medications coming out frequently,” said Dr. Dingle.

What should you do if you think you have lupus?

If you are concerned you may have lupus, talk to your primary care doctor. They can do an examination and run blood tests to see if you have any symptoms of inflammation in your organs. If they are concerned, they will refer you to a rheumatologist.

How can you support a loved one who has lupus?

Lupus is a chronic disease with many ups and downs. You can best support a loved one with lupus by being a listening ear when they are having difficulties.

“It is important to come to appointments prepared with questions and concerns, so helping them think through what they want to discuss with their doctor can be a good way to support your loved one,” Dr. Dingle said. “You can also remind them to put on their sunscreen and help them stay well by supporting other healthy habits such as exercising and eating healthy food.”