Top 7 Misconceptions about Lupus Erythematosus

Myths about lupus erythematosus being contagious, a form of cancer, occurring only in women, or preventing childbirth are all misconceptions.

You may have heard of lupus erythematosus, an autoimmune disease that affects approximately 1.5 million people in the U.S. and 5 million worldwide, according to the Lupus Foundation of America (LFA). However, a 2019 LFA survey revealed that 63% of Americans say they know little or nothing about the disease.

Additionally, there are many misconceptions surrounding lupus. Many people do not fully understand the causes of the disease or how to treat it.

Myth 1: Lupus erythematosus can spread from person to person

Lupus erythematosus is an autoimmune disease, meaning that the immune system of individuals with lupus attacks their own cells and tissues, leading to inflammation. Contrary to what many believe, this disease is not contagious.

Saira Sheikh, a professor of medicine at the University of North Carolina at Chapel Hill (UNC) and a member of the scientific medical advisory board of the Lupus Foundation of America, states: “You cannot ‘catch’ lupus erythematosus from someone or transmit it to anyone else through touch or close contact.”

While experts are not exactly sure what causes lupus, it is believed to be influenced by genetics, hormones, and environmental factors.

Selena Gomez is one of the celebrities diagnosed with lupus erythematosus. (Photo: Emma McIntyre).

Myth 2: Lupus erythematosus only causes fatigue and joint pain

The symptoms of lupus erythematosus are often misunderstood. In the same 2019 LFA survey, only about one-third of respondents could accurately identify symptoms of lupus beyond extreme fatigue and joint pain.

According to the Centers for Disease Control and Prevention (CDC), while fatigue and joint pain are indeed signs of lupus, the disease can affect nearly every part of the body, and the list of potential symptoms is long and varied. People with lupus may experience muscle pain, persistent fever, chest pain, hair loss, kidney problems, and a butterfly-shaped rash. Sometimes, it can also lead to life-threatening complications.

In fact, lupus symptoms can vary significantly from person to person, which is one reason why diagnosis can be very challenging. According to the LFA, on average, it may take 6 years for a person to receive an accurate lupus diagnosis from the time they first experience symptoms.

Myth 3: Men cannot have lupus erythematosus

While it is true that lupus erythematosus often affects women of childbearing age, there is a common misconception that men cannot have the disease.

According to the LFA, men can and do have lupus erythematosus, and about one in ten lupus patients is male. Because many people think of lupus as a disease that only affects women, men are often surprised to learn they have it.

However, it is important to note that anyone can develop lupus, and certain symptoms may present differently in men and women. For example, men with lupus are more likely to experience low blood counts, heart complications, unexplained weight loss, and kidney disease, according to the LFA.

Dr. Sheikh adds: “Men with lupus, like women, can often develop serious complications, including lupus affecting the kidneys. Men with lupus nephritis are more likely to require dialysis or a kidney transplant, and men also have a higher mortality rate due to lupus.”

Myth 4: Those with lupus erythematosus cannot become pregnant

Rheumatologist Laura L. Tarter, project director for Pregnancy and Reproductive Health at the Brigham and Women’s Lupus Program in Boston, indicates that there is a widespread misconception that those with lupus should not become pregnant or may face severe complications if they do.

She states: “That is simply not true, and most women with lupus have very positive outcomes when they become pregnant.”

According to the Office on Women’s Health at the U.S. Department of Health and Human Services, it is true that all pregnant individuals with lupus are considered high risk, meaning they have a higher likelihood of complications, but that does not mean problems are guaranteed.

Dr. Tarter notes that there is a misconception that those with lupus are more likely to experience miscarriages, but that is also incorrect.

“While some individuals with lupus may have antiphospholipid antibodies (aPL), which are associated with a slightly increased risk of miscarriage, most patients have miscarriage rates similar to the general population,” she explains.

The biggest concern for pregnant individuals with lupus is whether they will experience a flare-up, as this can lead to premature birth. However, the likelihood of a flare-up should not deter you from getting pregnant if that is your desire.

Dr. Tarter says: “Most flare-ups are mild, and even if someone does experience a flare-up, the disease can still be managed and there are many safe medications during pregnancy.”

The key takeaway is that if you have lupus and wish to start a family, talk to your rheumatologist as soon as possible. With your healthcare team, you can work towards achieving remission or controlling the disease for at least six months before getting pregnant, while also finding the safest medication to manage lupus during pregnancy.

Myth 5: Lupus erythematosus can be cured

In the 2019 LFA survey, 28% of respondents believed there was a cure for lupus, and 31% thought it could be prevented.

However, lupus is a chronic, lifelong disease, which means there is no cure or way to reduce the risk of developing it. But it can be managed with medication.

Myth 6: Lupus erythematosus is a form of cancer

Lupus erythematosus is an autoimmune disease, and immunosuppressive drugs such as azathioprine, mycophenolate mofetil, and cyclosporine can be used to manage the disease.

Since some of these drugs are also used to treat cancer, it can sometimes lead to confusion that individuals with lupus are being “treated with chemotherapy.”

Dr. Sheikh explains: “While lupus is not cancer, sometimes the disease is treated with powerful cytotoxic drugs used in cancer treatment. Although both cancer and lupus are related to the immune system, the mechanisms of action are different.”

According to the LFA, immunosuppressive drugs work by inhibiting the immune system so it does not attack healthy body tissues and are typically prescribed for those experiencing severe lupus symptoms.

However, immunosuppressive drugs are not the only type used to manage lupus. Depending on the type of lupus and the symptoms, doctors may recommend antimalarial drugs such as hydroxychloroquine, steroids, or non-steroidal anti-inflammatory drugs, among others.

While lupus is not a type of cancer, having the disease and using immunosuppressive drugs can increase the risk of developing cancer later, as noted by the Johns Hopkins Lupus Center. Therefore, it is important to work with your healthcare team to determine the medication that can successfully manage the disease while minimizing harm to the body.

Myth 7: You cannot exercise if you have lupus erythematosus

While joint pain, fatigue, and muscle weakness associated with lupus may seem like barriers to physical activity, exercising with lupus is actually a good idea, as long as your doctor approves.

In fact, regular exercise can help improve many symptoms of lupus and also supports cardiovascular health, better sleep, and improved mood, according to the LFA.

Low-impact cardio is a great way to start, including activities like walking, swimming, cycling, and yoga. Stretching helps maintain flexibility, while strength training can enhance and support the joints.

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