Lupus and Heart Disease: Alerting Young Women to the Dangers of Lupus

At the Heart of Lupus

Amy Thornton has been living with lupus for more than 20 years. Diagnosed at age 14 after the appearance of a butterfly-shaped rash across the bridge of her nose, Amy’s symptoms grew progressively more serious in her teens and twenties. She managed to live a pretty normal life, though, going to business school, starting a career in New York City, and getting married.

But two years ago, at age 36, Amy experienced a complication that took her completely by surprise. She had a heart attack, a result of premature coronary artery disease. Since then, she has had four angioplasties, a procedure that opens clogged arteries.

“Who gets a heart attack in their 30’s?” she recounts. “It was totally unexpected.”

Amy is just one of more than one million women in America who face the unpredictable course of systemic lupus erythematosus (SLE), a chronic autoimmune disease that attacks the body’s own healthy tissues and organs in a relentless pattern of flares and remissions. While the course and severity of the disease varies widely, in cases like Amy’s, it’s very serious and sometimes life-threatening.

Exploring the Connection

Unbelievably, Amy’s experience with heart disease is not that unusual for a woman with lupus. Like many others with the disease, she was unaware that lupus could lead to a heart attack or stroke.

And as she discovered, it doesn’t matter that none of the conventional risk factors apply to her—smoking, high cholesterol, advanced age, high blood pressure, obesity, or diabetes. Having lupus alone is risk enough, experts are beginning to realize.

Why people with lupus run such a dramatically increased risk for coronary artery disease is still unclear, although government and research organizations like the national nonprofit Lupus Research Institute (LRI) are starting to find some compelling clues.

Experts think that inflammation and other immune system abnormalities cause the coronary arteries of many people with lupus to rapidly clog and harden, a condition called atherosclerosis. Clots and bits of plaque can break off from artery linings, interfering with the blood’s passage to the heart and brain.

Young women in particular, like Amy, are very often unaware of the danger they’re under because they don’t feel anything unusual until a heart attack or stroke strikes. So although people with lupus of any age and gender can have problems, the shock to so many under age 40 is that they are nearly five times more likely to have atherosclerosis than healthy counterparts from the same age group, according to a key article published in The New England Journal of Medicine in December 2003. In total, an incredibly large number of people with lupus—as many as one third—have coronary arteries as stiff and plaque-filled as people twice their age.

Tools to Fight Back

Unfortunately, doctors still can’t easily tell which of their patients with lupus will develop heart disease. Lupus Research Institute investigators and others are hoping to solve this problem by finding markers in the blood (biomarkers) that will enable them, with a simple blood test or noninvasive imaging study, to determine who is at risk—and who might possibly benefit from powerful yet costly and often problematic cholesterol-lowering drugs or blood thinners.

While researchers continue their hunt for clues and tools to fight lupus-related heart disease, women can start to protect themselves right away. For example, they can lessen their chances of developing heart problems by limiting other risk factors (smoking, high blood pressure, excess weight). And they can stay heart-healthy with regular exercise—even just 30 minutes of brisk walking daily—and other smart lifestyle choices. Women with lupus should also talk to their rheumatologist about their risk of heart disease, and consider scheduling a visit with a cardiologist.

Knowing the warning signs of a heart attack and stroke are also key, as is making sure the doctor carefully follows and does something about conventional indicators of heart disease, such as high cholesterol and high homocysteine levels (an amino acid in the blood).

Get the Facts. Get into the Loop.

Today, Amy once again leads a manageable life with lupus. She has stopped working to take care of her sons and to eliminate added stress in her life that may aggravate her disease. She makes regular visits to her rheumatologist to monitor any symptoms or signs of potential flares, and she continues on a heavy dosage of daily medications for heart disease as well as kidney problems (lupus nephritis) that she developed earlier in life.

And although she does not know what the future course of the disease holds for her, Amy maintains a positive outlook and a hope for new developments in research and treatments.

“Living with lupus brings uncertainty to my life because you never know when you’re going to have a flare,” Amy adds. “The heart disease further increases this uncertainty and certainly makes me worry more about the future. Nevertheless, I try to live as normal a life as possible and do what I can—like exercise and take my medication—to maintain my health.”

For others with lupus, her experiences show that the best way to handle the disease is to stay alert and aware. And for the countless women who don’t even realize they have lupus in the first place, it’s vital that they become aware of signs and symptoms of this devastating disease. So much damage can be prevented when treatment starts early.

For these reasons, the Lupus Research Institute and its national coalition of state and local patient organizations launched a hard-hitting public service announcement in April 2005, alerting young women to the dangers of this disease. The television campaign focuses on how lupus can start with seemingly minor symptoms (fatigue, fever, joint pain) but can cause more serious complications and even be fatal.

Actor James Garner, whose daughter has lupus, encourages young women to “get into the loop,” and protect themselves against the disease.