7 Myths About Lupus It's Time to Stop Believing

You may have heard of lupus, an autoimmune disease that affects roughly 1.5 million people in the United States and 5 million worldwide, according to the Lupus Foundation of America (LFA).

But even if you have, it's likely you're not an expert: According to a 2019 survey from the same foundation, 63 percent of Americans reported knowing little or nothing about the disease.

What's more, it's also very possible you've heard something inaccurate about lupus. Misconceptions about the disease abound, and despite how widespread it is, many people don't fully understand whom this disease affects, what causes it and how it's treated.

Here are six common myths about lupus and what to believe instead:

Lupus is an autoimmune disease, which means the immune system of a person with lupus attacks its own cells and tissues, resulting in inflammation.

But despite what you may have thought, it's not contagious (that's true for all autoimmune diseases, by the way).

"You cannot 'catch' lupus from someone, or transmit it to anyone else by touch or close contact," says Saira Sheikh, MD, the Linda Coley Sewell Distinguished Professor of Medicine at the University of North Carolina at Chapel Hill (UNC) who is triple-board-certified in internal medicine, rheumatology and allergy/immunology and a member of the Lupus Foundation of America Medical-Scientific Advisory Council.

Although experts aren't sure exactly what causes lupus, it's believed to be influenced in part by genetics (the risk among siblings of people with lupus is about 20 times higher than the general population, according to the Johns Hopkins Lupus Center), as well as hormones and environmental factors.

Lupus symptoms are also hugely misunderstood. In that same 2019 survey from the LFA, only about one-third of respondents could correctly identify lupus symptoms other than extreme fatigue and painful or swollen joints.

While fatigue and joint pain are indeed possible signs of lupus, the disease can affect virtually any part of the body, according to the Centers for Disease Control and Prevention (CDC), and the list of potential symptoms is long and varied: People with lupus can experience muscle pain, persistent fevers, chest pain, hair loss, kidney problems and a butterfly rash, too — and that's naming just a few.(It can sometimes lead to fatal complications as well.)

The fact that lupus symptoms can differ dramatically from person to person — as well as mimic other conditions — is one reason why it can be so difficult to get a diagnosis. (On average, it can take six years for a person to get an accurate lupus diagnosis from the time they first start experiencing symptoms, according to the LFA.)

"The symptoms can often evolve over time, which can make diagnosing lupus even more challenging, particularly early in the disease," Dr. Sheikh says. "In my opinion, no two [people with] lupus are truly alike in their disease presentation, which makes this a unique disease."

While it's true that lupus usually affects people assigned female at birth (AFAB) in their childbearing years, it's a common misconception that those assigned male at birth (AMAB) can't get the disease.

Men can and do develop lupus — as can children and teenagers, for that matter — and around 1 in 10 lupus patients are male, according to the LFA.

Because so many people think of lupus as a disease that only affects women, men are often surprised to learn they have it, the LFA notes.

But it's important to be aware that anyone can develop lupus, especially because certain symptoms can look a little different in men versus women. For example, men with lupus are more likely to experience low blood count, heart complications, unexplained weight loss and kidney disease, according to the LFA.

"Men with lupus, like women, can often develop severe complications such as lupus nephritis, in which lupus affects their kidneys," Dr. Sheikh adds. "Men with lupus nephritis are more likely to end up requiring hemodialysis or kidney transplantation, and men also have a high rate of mortality from lupus."

There's a common misconception that people with lupus shouldn't get pregnant or are likely to have serious complications if they do, says rheumatologist Laura L. Tarter, MD, Director of Pregnancy and Reproductive Health at Brigham and Women's Lupus Program in Boston. "But that's really not true, and most women with lupus do very well in pregnancy," she says.

It's true that all pregnant people with lupus are considered high-risk, according to the U.S. Department of Health & Human Services Office on Women's Health, which means there is a higher likelihood of complications, but that doesn't mean problems definitely will occur.

For example, there's a misconception that people with lupus are more likely to have miscarriages, Dr. Tarter notes, but that, too, isn't true.

Though some people with lupus have antiphospholipid antibodies (aPL), which carry a slightly increased risk of miscarriage, "most patients have the same miscarriage rate as the general population," she says. Even within that group of people with aPL antibodies, "not everyone who has them is going to have a miscarriage."

A major concern in a lupus pregnancy is if the pregnant person were to have a flare, which could cause preterm delivery. But the chances of a flare occurring shouldn't deter you from exploring a pregnancy if that's something you want.

Most flares are mild, and "even if somebody were to have a flare, it can be managed, and there are many medications we can safely use in pregnancy," Dr. Tarter says.

The bottom line? If you have lupus and would like to start a family, talk to your rheumatologist as early as possible. Together with your medical care team, you can work to get your disease in remission or under control for at least six months before becoming pregnant, and also decide on the best medications to safely manage lupus during pregnancy.

In the LFA's 2019 survey, 28 percent of respondents said they believed there is a cure for lupus and 31 percent thought it could be prevented.

Lupus is a chronic and lifelong disease, which means there's unfortunately no cure, nor is there any known way to lower your risk.

But it can be managed with any number of medications that help control symptoms (more on those below).

Again, lupus is an autoimmune disease, and immunosuppressive medications (azathioprine, mycophenolate mofetil and cyclosporine, as a few examples) are one type of medication that can be used to manage the disease.

Some of these medications are also used to treat cancer, which can sometimes confuse people who hear that a person with lupus is being "treated with chemotherapy drugs."

"Even though lupus is not cancer, sometimes the disease is treated with strong cytotoxic medications that are also used in the treatment of cancer," explains Dr. Sheikh. "While in both cancer and lupus, the immune system is involved, the mechanisms at play are different."

Immunosuppressive medications work to suppress the immune system so it doesn't attack healthy body tissues, and they're usually prescribed for people experiencing serious lupus symptoms, per the LFA.

Immunosuppressives are far from the only medications used to manage lupus, though. Depending on the type of disease and your symptoms, your care team may instead recommend antimalarials such as hydroxychloroquine, steroids such as Prednisone or non-steroidal anti-inflammatories (NSAIDs), among others.

But while lupus is not a type of cancer, both having the disease and taking immunosuppressive medications can increase your risk of developing cancer later on, the Johns Hopkins Lupus Center notes. This makes it critical to work with your medical team to find medications that successfully manage the disease so it does less damage to your body.

Although the joint pain, fatigue and muscle weakness that can come with lupus may seem like deterrents when it comes to physical activity, exercising with lupus is actually a good idea (so long as your doctor signs off).

In fact, getting regular exercise can help improve many lupus symptoms, and it can also support heart health, better sleep and improved mood, per the LFA.

Low-impact cardio is a great place to start, including activities like walking, swimming, biking and yoga. Stretching may also help with mobility and flexibility, and strength training may help strengthen and support your joints.