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.
"It can be a moving target,” says Lauren Metelski, senior manager of the Health Education Specialists 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. “You might have a few bad weeks and schedule a doctor's appointment, then the symptoms get better by the time you go in,” 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.
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 also important, because lupus may lead to inflammation and damage almost anywhere in the body, 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 5 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 heart or kidneys have been damaged by lupus. “Lupus nephritis, or inflammation in the kidneys, occurs in almost half of people with lupus,” says Metelski, who adds that lupus can also cause inflammation in and around the heart.
3. Random fevers
Healthy people get fevers when they catch an infectious bug that their body wants to fight off. In those with lupus, however, emotional stress or even the cold they had weeks ago may set off an inappropriate immune response that leads to a low-grade fever, Metelski 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 distinct possibility. That's because lupus can damage 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
With the exception of a butterfly-shaped rash, the above-mentioned symptoms could pertain to any number of health ailments, so the best thing to do is to inform your primary care doctor. It is also useful to keep a symptom diary, to help your physician find telltale patterns (such as sun exposure that precedes a rash, or a stressful period at work followed by a fever), Metelski 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 skin biopsy (assuming you have a rash). 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 (rheumatologist) and taking medication as prescribed, most patients can enjoy a normal life span.