En español | Lupus, a chronic autoimmune ailment that affects 1.5 million Americans, is a bit of a shape-shifter. Most people with it (around 70 percent) have the systemic form of the disease, which can wreak havoc on pretty much any major organ or tissue in the body. That means the way it manifests can differ dramatically among patients; it may also cause different symptoms in the same patient at various life stages.
“Lupus is an unpredictable disease,” says Leticia Ocaña, manager of health education and Hispanic outreach at the Lupus Foundation of America. She adds that flares — periods in which the disease is active — are often interspersed with periods of remission. That can make diagnosing the condition extra tricky. “Symptoms of lupus can come and go and change during the course of the disease,” she notes.
Also problematic is that while extreme fatigue is perhaps the most common symptom, exhaustion can be caused by a slew of other health problems, too.
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Although most sufferers no longer die of lupus, it can still pose serious, sometimes-fatal complications, such as kidney damage and cardiovascular disease. Keeping an eye on symptoms is important, because lupus may lead to inflammation and damage almost anywhere, though it most often affects the skin, kidneys and joints. Symptoms can range from mild to severe, and they don't necessarily get worse the longer you have the condition — provided you're treating it properly.
Keeping an eye out for other common lupus signs can help you decide if you should be screened for the disorder. That's especially pertinent if you fall into a higher-risk category for this disease. Anyone can get lupus, but it's most often diagnosed in women, with women of color — including, but not limited to, Blacks, Hispanics and Asians — facing higher risks than their white counterparts. Likelihood also increases with a personal or family history of autoimmune disease.
Here are five possible symptoms of lupus to keep on your radar.
1. A butterfly-shaped rash or one that appears on sun-exposed skin
Lupus is well-known for causing a distinctive butterfly-shaped rash that spans both cheeks, though not everyone who has the disease will develop it. Other types of rashes are also common, especially on skin that gets sun exposure. “UV light can trigger cell breakdown, [which] can trigger an immune response leading to a rash,” says Kai Sun, M.D., assistant professor at Duke University School of Medicine and rheumatologist at the Duke Lupus Clinic.
2. Swollen legs
Fluid collects in the legs when the body isn't filtering it properly. That may happen if your kidneys have been damaged by lupus. “Lupus nephritis, or inflammation in the kidneys, occurs in up to 60 percent of adults and 50 percent of children with lupus,” says Ocaña, who adds that swelling can also occur in the face and hands.
3. Random fevers
Healthy people get fevers when they catch an infectious bug that their body wants to fight off. This is also true of people with lupus. However, in those with lupus, emotional stress or exposure to UV rays may set off a lupus flare and immune response that leads to a low-grade fever, Ocaña says.
4. Chest pain
Does it hurt when you try to take a deep breath? There are many conditions — including COVID-19, pneumonia and even a heart attack — that can cause this symptom, but lupus is a possibility. That's because lupus can cause inflammation in the lining of the heart or lungs, Sun explains.
5. Painful hands and wrists
Pain in the small joints of your hands and wrists can be due to many things, including too much typing and osteoarthritis. But it may also signal an inflammatory autoimmune condition like lupus. In fact, about 95 percent of people with lupus experience joint pain at some point. Stiffness and discomfort in other joints is possible, too. Many patients have arthralgia (pain) or arthritis (pain plus swelling) in 5 or more joints.
Making sense of the clues and getting a diagnosis
If you have some of the common symptoms of lupus, such as joint pain and extreme fatigue, for more than a few weeks, or you’ve noticed a face rash — and especially if you have any risk factors for an autoimmune disease — you should keep track of your symptoms and share them with your doctor, who can help determine whether these could be due to lupus or another illness, Ocaña suggests.
If your doctor suspects that lupus is a possibility based on your symptoms and taking a thorough medical history, you'll likely need blood tests, urine tests and, perhaps, a biopsy of the skin or kidney. Unfortunately, there isn't any single test that can diagnose lupus. If it turns out you have the disease, you should know that there are plenty of treatment options — but no cure. By working closely with a specialist, such as a rheumatologist, and taking medication as prescribed, most patients can enjoy a normal life span.
Barbara Brody is a New York-based freelance writer who specializes in health and wellness. Her work has appeared in many outlets, including WebMD, Health and Prevention.