Lupus is “the epitome of an autoimmune disease,” says Stuart D. Kaplan, MD, the chief of rheumatology at South Nassau Communities Hospital in Oceanside, New York. “It’s the body fighting itself and making antibodies against one’s own cells.” This lifelong, chronic disease has the potential to affect almost every organ system in the body, although not all systems are affected in any one person. The first thing patients need to know is that lupus varies in symptoms and severity from person to person, adds Dr. Kaplan. Some people have active disease while other have mild disease. It’s important to note that lupus is not contagious.
Systemic lupus erythematosus (SLE) About 70 percent of people diagnosed with lupus have this form, making it the most common. In some people, the disease is mild and may cause only rash and some joint pain, says Kaplan. In others, inflammation can lead to inflammation of the kidney (also known as lupus nephritis) or other complications, he says.Cutaneous lupus erythematosus This form of lupus develops in the skin as a rash. The most common form of cutaneous lupus erythematosus is discoid — which refers to the appearance of round, raised, red, and scaly rash that does not itch, per the Lupus Foundation of America.About 10 percent of discoid lupus patients can go on to develop SLE.Drug-induced lupus erythematosus (DIL) Some drugs can cause conditions very similar to lupus, resulting in symptoms such as rash, arthritis, hair loss, and fever. “Once medications are discontinued, the symptoms go away," thus it is not SLE, says Roberto Caricchio, MD, the chief of rheumatology at Temple University Hospital in Philadelphia and the director of the Temple Lupus Program at the Lewis Katz School of Medicine.Neonatal lupus Technically neonatal lupus is not a form of lupus. The condition is the result of autoantibodies passing from a pregnant woman with lupus (or related condition) through the placenta and to the baby developing in the womb, causing mostly temporary symptoms, explains Virginia Pascual, MD, the director of the Gale and Ira Drukier Institute for Children’s Health at Weill Cornell Medicine in New York City. Some infants are born with symptoms such as skin rash, liver problems, or white blood cell counts. But those symptoms disappear within a few months and leave no lasting effects.
Learn More About the Different Types of Lupus Stress may contribute to the immune system not functioning properly, explains Kaplan. And both emotional and physical stress, such as from surgery, have been known to exacerbate lupus. RELATED: What You Should Know About How Stress Can Make You Sick Many women with lupus find that the condition may flare before their period. Estrogen peaks around day 14 of the menstrual cycle, but “it takes a while for the flare to develop,” says Kaplan. Lupus can also flare during or shortly after pregnancy, he adds. Learn More About Signs and Symptoms of Lupus Experts suspect that your genes, as well as other things you’re exposed to throughout your life, affect likelihood of you getting lupus:
Genetics Doctors and researchers believe a genetic predisposition may contribute to the development of lupus, says Kaplan. Dozens of genetic variations have been found to be associated with the disease, affecting who gets it and how severe those cases are, according to the Lupus Foundation of America. That means the disease is hereditary, making parents more likely to pass it to their children. But just because you are genetically predisposed to the condition, doesn’t necessarily mean you’ll get it.Environment Researchers suspect environmental factors may increase the risk of developing lupus. For example, exposure to sun can cause a lupus rash and some systemic lupus activity, says Stacy Ardoin, MD, a rheumatologist at the Ohio State University Wexner Medical Center in Columbus. Other environmental factors that may contribute to lupus can include some drugs, viral infections, exhaustion, stress, and anything that can cause physical stress to the body (such as surgery, physical harm, injury, pregnancy, or giving birth).Hormones Lupus is much more common in women than in men. One reason for this may be because of higher estrogen levels in women, notes Kaplan — though that has not yet been proved in scientific studies, notes the Lupus Foundation of America.
Learn More About What Causes Lupus Other tests for lupus depend on the symptoms patients are experiencing, says Kaplan. For example, chest X-rays and echocardiograms may be necessary to investigate fluid around the lungs and the heart. If doctors suspect nephritis is present, the patient may need a kidney biopsy. Early diagnosis and treatment can help to avoid complications, he adds. An accurate diagnosis of lupus can take time, says Caricchio. However, the availability of good lupus classification criteria can make the chance of receiving a wrong diagnosis slim, he adds. Classification criteria are a set of symptoms doctors use after they suspect that you have lupus, to determine the type and severity of your case. Fortunately, increased awareness among the general public and primary care physicians may mean patients may see a rheumatologist sooner rather than later for diagnosis, says Caricchio.
Learn More About How Doctors Diagnose Lupus and What Tests to Expect
Prognosis of Lupus
While a lupus diagnosis can be overwhelming, if the disease is controlled, people living with the condition should be able to “go about life as normally as people who don’t have lupus,” Luk says.
Individuals should go on pursuing activities or hobbies they enjoyed before diagnosis, adds Caricchio. And, he says: Women with lupus can have children. “We don’t discourage having kids by any means,” he says. “But it is recommended that women become pregnant when lupus is not active, so that the chance of flare is minimal.” Flare symptoms can also be wide-ranging. Some people may experience relatively mild flares that include rash and arthritis, while others have severe flares, such as kidney inflammation, adds Luk.
Medication Options for Lupus
Some patients with mild lupus — with a little joint pain or rash — can be managed with anti-inflammatory drugs such as nonsteroidal anti-inflammatory inhibitor drugs (also known as NSAIDs), says Kaplan. Steroids may also help with inflammation associated with lupus, he says. Other drugs used to treat lupus include the antimalarial drug hydroxychloroquine, which modulates the immune system, and belimumab, a targeted drug that is a biologic (meaning it’s made from natural sources). Some chemotherapy drugs and antirejection drugs may be used, too, to treat patients with lupus nephritis or other organ problems, says Caricchio.
Why Lupus Monitoring Is Important
While lupus is more treatable than it used to be, the disease can still be life-threatening, Ardoin notes. “It’s hard to predict the course of illness, so it’s important for patients to check in regularly with their rheumatologist,” she says. After people are diagnosed and begin treatment, they need to see their rheumatologists regularly for blood draws to monitor white blood cells, red blood cells, and platelet levels, says Ardoin. Blood tests also help doctors monitor levels of complement proteins, which boost the body’s immune response to infections. (Levels of complement proteins, as well as some others, are low when the disease is active, explains Ardoin.) Blood and urine tests are also needed to check kidney function. “It’s important to regularly follow up with a rheumatologist to make sure the disease is not starting to become more severe,” says Luk. If kidney problems are not detected early, the risk of renal failure and death are higher.
Alternative and Complementary Therapies
In addition to treatment, certain lifestyle and dietary adjustments can help people with lupus. There’s no specific “lupus diet” but incorporating foods that fight inflammation can be beneficial. Maintain a healthy balance of fresh vegetables such as dark leafy greens, whole grains, and protein from fish and beans, and watch out for sugar and unhealthy fats. Limit high-fat and processed foods. And, avoid alfalfa — it has substances that can activate your immune system. Dietary changes may also be necessary depending on which medication you’re taking for your treatment. Learn More About Treatment for Lupus
Prevention of Lupus Flares
There’s no known way to prevent lupus itself, but there are steps you can take to help prevent flares of symptoms. You can’t entirely predict when a flare will happen but it’s important to stick to your treatment and identify — and then avoid or reduce — triggers such as stress, infections, and sunlight. Maintaining overall health is key, too. Because lupus is associated with an increased risk of cardiovascular disease, whether due to inflammation or genetics, maintaining a healthy lifestyle is particularly important, says Caricchio. He recommends getting enough sleep, maintaining a healthy body weight, exercising, and eating a nutritious diet. RELATED: How to Sleep Better, Tonight RELATED: 10 Amazing Benefits of Exercise Additionally, people with lupus should be mindful to avoid sun exposure as much as possible by wearing sunscreen and protective clothing, says Kaplan. A photosensitive rash can become worse in UV light. Good social relationships and support groups can also be important for maintaining mental health, says Ardoin. Learn More About Preventing Lupus Flares The new research estimates that for every 100,000 people in the population, there were 72.8 cases of lupus. Lupus rates are nine times higher for women than for men, at 128.7 versus 14.6 per 100,000 people; and are highest among American Indian, Black and Hispanic women, at 270.6, 230.9, and 120.7 cases per 100,000 people respectively. There are 84.7 cases of lupus per 100,000 white women, in contrast. Because the new study estimates that just over 200,000 Americans suffer from SLE, lupus might be officially reclassified as a rare disease under the U.S. Rare Diseases Act. This shift could make drug development easier for pharmaceutical companies in search of potential lupus therapies. A rare-disease classification would decrease the number of study participants needed for testing new treatments and shaping the design of clinical trials. Children undergo the same diagnostic testing as adults, and treatments are similar. “There are few clinical trials in children, so there is no option but to treat children based on the adult experience. We use the same drugs,” says Pascual, with doses adjusted according to the child’s weight. Doctors should closely monitor children for drug side effects. Steroids, for example, can delay growth and cause high blood pressure. Chemotherapy can make children more prone to infections, says Pascual. Fortunately, life expectancy in pediatric lupus has improved dramatically in the last 15 years, she says. The research also quantified, for the first time, the prevalence of lupus in men with direct comparison between ethnic groups. Lupus rates are highest in Black men, followed by Hispanic, Asian, and white men. Somers’s group, funded by the Centers for Disease Control and Prevention, continues their work by looking at why there are such stark disparities in lupus between genders and race. Using the data from the five registries, the researchers are also looking at patients’ experiences with lupus and how the disease evolves. This health organization has been leading the fight against lupus for over 40 years, raising money for research and education. On their site you’ll find a national resource center with up-to-date medical information, along with encouraging articles on living and coping with the disease. COVID-19 Global Rheumatology Alliance This grassroots organization collects and shares information on how the coronavirus affects patients with autoimmune diseases. Its website provides the latest research on COVID-19 patients with rheumatic diseases, as well as ongoing results from its patient experience survey. Kaleidoscope Fighting Lupus This nonprofit organization offers a wealth of information for patients, from local support groups, to financial assistance, to a comprehensive online resource center with links to the latest research and clinical trials, healthy living ideas, and community-building efforts. Lupus LA Founded in 2000, this Los Angeles–based nonprofit promotes lupus medical research, provides support to people living with the autoimmune condition, and raises awareness at a national level. Lupus Research Alliance For the latest on research, treatments, and clinical trials into the causes of lupus, check out the Lupus Research Alliance. You can also ask questions in their community forum.
Favorite Blogs About Living With Lupus
Despite Lupus At age 26, Sara Gorman was diagnosed with lupus and resolved not to let it interfere with her busy career and social life. But after four unsustainable years fighting it, she “committed to working with the disease rather than against it.” Her blog, Despite Lupus, focuses on living well with chronic illness, covering everything from how to not feel overwhelmed by the disease to how to carry around your meds stylishly. LupusChick Since 2008, the journalist Marisa Zeppieri has run LupusChick, providing resources, motivation, and support for others with chronic illness. Check out the blog for a wealth of “information, advice, nutrition, recipes, coaching, humor, life hacks, true stories, and more.” Additional reporting by Carmen Chai.
