What is Lupus? Understanding the Symptoms and Treatment

A rheumatologist shares what to know about lupus, a lifelong autoimmune disease that can affect the skin, joints, and organs.

Lupus is a chronic, autoimmune disease that can affect the skin, joints and organs, and about 1.5 million people in the United States live with the disease, according to the Lupus Foundation of America.

“The immune system works to fight infections,” says Dr. Anca Askanase, a rheumatologist at NewYork-Presbyterian/Columbia University Irving Medical Center and director of the Lupus Center at Columbia. “But with autoimmune diseases like lupus, which has no cure, it attacks the body’s healthy cells and tissues instead.”

The cause of lupus is not known, but genetics, hormones, and environmental factors may play a role.

To mark Lupus Awareness Month in May, Health Matters spoke with Dr. Askanase to better understand the symptoms of lupus, who is at risk, and ways to treat and manage the disease.

Lupus causes the immune system to attack the body’s healthy cells and tissues.

The immune system is made up of a few components, and some include antibodies and white blood cells. “These mechanisms work as the body’s defense system against outside invaders, such as bacteria and viruses, to keep people healthy,” says Dr. Askanase. “For people living with lupus, the immune system is overreactive and produces antibodies that mistakenly attack healthy cells and tissues, resulting in inflammation.”

The inflammation affects the skin, joints, and organs, such as the kidney, heart, and brain, leading to a variety of symptoms for people living with lupus.

Dr. Anca Askanase

There are different types of lupus.

The most common form of lupus is systemic lupus erythematosus — about 70% of people have this kind of lupus, estimates the foundation.

Others are cutaneous lupus, a type that affects the skin, and drug-induced lupus, which is caused by certain prescription medications. Drug-induced lupus tends to go away six months after the person stops taking the medications. These two types account for about 20% of lupus cases.

“Systemic lupus erythematosus is the most serious,” says Dr. Askanase. “It can affect multiple organs over time, such as the brain, heart, and kidneys.”

Neonatal lupus is a rare kind, occurring when the mother’s antibodies affect the fetus. Most symptoms, such as a skin rash or low blood cell counts, disappear after six months, as the mother’s antibodies are cleared from the baby’s blood.

Fatigue, joint pain and swelling are common symptoms of lupus.

The most common symptoms of lupus are fatigue, joint pain or swelling, and a symmetrical rash shaped like a butterfly on the face. Rashes can also appear on the arms, fingers, and legs. Mouth sores and hair loss are also typical symptoms.

“As part of healing the inflammation of lupus, scaring ensues over time in the affected areas,” says Dr. Askanase. “When it occurs repeatedly in an organ, for example, scaring can lead to organ damage.” 

Women are more at risk for developing lupus.

About 90% of people living with lupus are women who are between 15 to 45. “Nine out of 10 people diagnosed with lupus are women,” says Dr. Askanase. “But lupus can also affect children, teenagers, and men.” People who are African American, Asian American, Hispanic/Latino, Native American, or Pacific Islander have a higher risk of developing the disease.

Diagnosing lupus is a process consisting of several factors.

Lupus can be hard to diagnose and there is no single test to detect the disease, “Symptoms are similar to that of other conditions,” says Dr. Askanase. “People with lupus may have joint pain, low blood counts, may be having kidney problems, or be experiencing fatigue. Some have all the above. Lupus is very different in every person.” 

Before making a diagnosis, a person’s medical history and family history of lupus or other autoimmune diseases is considered. Patients also have a complete physical exam, blood and urine test, and a skin or kidney biopsy.

There are many treatment options for lupus.

Treatment for lupus may consist of antimalarial medicines to treat fatigue, joint pain, and skin rashes, corticosteroid cream for rashes, and nonsteroidal anti-inflammatory drugs, such as ibuprofen, for mild joint or muscle pain and fever. At times, patients may also receive chemotherapy, which can help regulate the immune system when it is overactive. In cases where lupus is starting to affect organs, chemotherapy can be administered in larger doses to suppress the immune system, such as from producing antibodies that are attacking healthy cells and tissues. 

“It’s also a very exciting time as we have had new medications to treat moderate to severe cases of lupus in the last few years,” says Dr. Askanase. “Voclosporin, an immunosuppressive, was approved in 2021 to treat lupus nephritis in adults. Also in 2021, anifrolumab was approved to treat adults with systemic lupus erythematosus.”

Precautions can help prevent flare-ups.

It is important for a person living with lupus to follow their treatment plan and take care of themselves. One way to manage the disease is to take precautions to prevent lupus flare-ups, which is when symptoms worsen.

A few ways to keep lupus under control are:

  • Getting enough rest. Some people may need up to 12 hours of sleep every night.
  • Avoiding the sun, wear sunscreen, and protective clothing when outside.
  • Exercising regularly.
  • Learning to determine when a flare-up is potentially happening.
  • Seeing doctors regularly.

Anca D. Askanase, M.D., is a rheumatologist at NewYork-Presbyterian/Columbia University Irving Medical Center, a professor of medicine at Columbia University Vagelos College of Physicians and Surgeons, an associate director of the Division of Rheumatology, and director of Rheumatology Clinical trials. She is also the founder and director of the Lupus Center at NewYork-Presbyterian/Columbia University Irving Medical Center.

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