Up until it nearly killed her, Dr. Chantrise Holliman was not worried about the harm lupus could do to her heart.
The educator had been diagnosed with the autoimmune disorder in 2006, when she was in her early 30s, after a doctor realized it was what had been causing the excruciating pain in her joints. But despite occasional flare-ups – a rash on her upper arm, swelling in her hands – Holliman figured she was in pretty good shape.
After all, she was running half-marathons and watching her diet. “I was eating the kale,” said Holliman, who lives in Savannah, Georgia. “And I thought I was healthy, until I almost died.”
The heart attack came in 2018. Doctors told her that it wasn’t from traditional heart disease – her blood pressure and cholesterol levels, in fact, had been fine. Still, an artery was blocked. And that was how she found out that lupus poses serious risks to the heart.
“I began to learn that years of not taking the medicine I needed to take for my lupus, missing doctor’s appointments, not managing the lupus the way that I needed to, had done damage,” she said. “And that’s where that one blocked artery came from. But I didn’t know any of that. Until I had my heart attack.”
Cardiovascular problems are common with lupus, experts say.
Lupus turns the body’s immune system, which protects against viruses and bacteria, against itself, said Dr. Maureen McMahon, a professor of medicine and rheumatology at the David Geffen School of Medicine at the University of California, Los Angeles. “Instead of just attacking foreign invaders, it starts to attack the body’s tissues.”
Estimates vary about how many people are affected. A study published in Arthritis and Rheumatology in 2021 used information from several Centers for Disease Control and Prevention registries to estimate that as of 2018, about 204,000 people in the U.S. lived with lupus. Among them: entertainers Toni Braxton and Selena Gomez.
Lupus can affect anyone from children to older adults, McMahon said, but it most commonly affects women of childbearing age. The pooled CDC data indicate that the prevalence is nine times higher for women than men, and it’s highest among Black women. It also affects Hispanic women at higher levels than white, Asian or Pacific Islander women.
Although lupus has several variations, the most common form is called systemic lupus erythematosus, or SLE. Symptoms include rashes, sunlight sensitivity, joint pains and abnormal blood counts, McMahon said. It can involve organs such as the kidneys, brain and heart.
The varying symptoms can make SLE hard to diagnose, McMahon said. Holliman lived that experience. She’d been to the emergency room several times, where she was told her pains were probably just a pulled muscle or related to her running. She credits a friend who led her to a primary care doctor who, like Holliman, is Black, and was aware that she was in a higher-risk group and quickly diagnosed the problem.
The cardiovascular effects of the disease also vary from person to person, said Dr. Michelle Petri, a professor of rheumatology at Johns Hopkins University in Baltimore. “Lupus is a heterogeneous disease,” said Petri, head of the Johns Hopkins Lupus Center. “Each patient is unique.”
Those effects can be serious. A research review McMahon co-wrote and published in the journal Lupus in 2023 found the increased risk of stroke, heart attack and cardiovascular disease to be about two to three times higher in someone with lupus compared to the general population.
But younger people are affected disproportionately. A study published in Arthritis Care and Research in 2020 found that 18- to 39-year-olds with lupus had a higher incidence of a heart attack or stroke than 50- to 65-year-olds in the general population. A frequently cited 1997 study in the American Journal of Epidemiology estimated that women ages 35 to 44 were more than 50 times more likely to have a heart attack if they had lupus.
Lupus also can lead to pericarditis (an inflamed lining of the heart) or myocarditis (inflammation of the heart muscle). Several studies have identified cardiovascular disease as a top cause of death in people with lupus.
It can do harm in several ways. It can damage the inner lining of coronary arteries, Petri said. It also can speed the development of atherosclerosis, where plaque builds up and clogs arteries.
Inflammation from lupus might also be playing a role that is not fully understood, McMahon said.
The risks from lupus would be on top of standard heart disease risk factors such as high blood pressure or whether someone smoked. “Lupus itself causes a risk above and beyond those things,” McMahon said. She likened the level of added risk to that from diabetes.
Given such risks, McMahon said people with lupus need to pay extra attention to lifestyle choices related to diet, exercise and sleep that can help protect against heart disease. That can be a challenge, she said, because lupus can make exercise painful, and steroid treatments can cause weight gain and other problems. (Petri said there are efforts to eliminate steroids as a treatment for non-renal lupus.)
People with lupus also should work with a cardiologist in addition to a rheumatologist, McMahon said, noting that some large medical centers now have programs that combine cardiology and rheumatology. Even without such a program, a cardiologist can help assess risks and order specialized scans. She said the threshold for deciding whether to do such tests should be very low, “because you can’t always predict just by looking at a patient whether they’ll actually have accelerated atherosclerosis.”
McMahon said she has seen a lot of progress made in helping people with lupus. “We fortunately have so many more treatments than we used to,” she said. And she called clinical trials for future treatments “exciting.”
Holliman said she has not had a lupus flare-up since 2018. But that ordeal still affects her.
Lupus severely complicated her recovery, her cardiologist told her. Her immune system fought off medications given to treat her heart attack. Her heart stopped and had to be shocked several times. Infection set in. She had already been dealing with lupus-related Raynaud’s syndrome, which restricts the flow of blood. Doctors had to amputate her legs, and she nearly lost the tips of her fingers, ears and nose, too.
But to the amazement of her doctors, Holliman pulled through. She now works as a contractor for the CDC, designing instructional materials, and retells her story as a volunteer for the American Heart Association.
She urges people with lupus to take care of themselves. Before her heart attack, she would see a doctor only when she absolutely needed to. As a mother, wife and teacher, she thought, “There were things I had to do, and things that needed to get done. I didn’t have time to be sick.”
Now, Holliman tells her fellow lupus patients, “Don’t wait until your body’s falling apart before you go to the doctor. Make your appointments and keep your appointments. I was the queen of making appointments and then canceling them because I had, quote unquote, ‘other things to do.’ I did not take this disease seriously enough.”
