Key facts to know about lupus

Lupus is a chronic autoimmune condition that can cause inflammation and damage to any part of the body.

“Your immune system—which helps protect your body—gets confused and starts attacking itself instead,” says rheumatologist Angela Malani, MD, of St. Joseph Mercy Ann Arbor in Ypsilanti, Michigan. “It can attack your skin, causing skin changes and rashes,” she says. “It can attack your joints, causing arthritis. It can affect your internal organs, your brain, heart, lungs, kidneys and digestive system.” 

According to the Lupus Foundation of America, over 16,000 new cases of lupus are identified every year in the United States. Some who receive the diagnosis assume that because there is no cure, it’s a life-or-death situation. Fortunately, that’s usually not the case.

Dr. Malani says that lupus doesn’t affect everyone in the same way. “One patient may just have skin manifestations,” she says. “Another may have skin rashes and arthritis, and still another may have rashes, arthritis, and kidney disease. That's part of what makes it a tricky disease to understand.” 

Here’s what you need to know about lupus risks, symptoms, and treatment. 

Who’s at risk 

Lupus can affect anyone, but environmental factors, such as an infection or medication can initiate the disease in people who have a genetic disposition to it. Other risk factors include: 

• Age: Lupus usually develops between the ages of 15 and 44. 
• Sex: Lupus mainly affects women, but men can also be affected. 
• Race and Ethnicity: Hispanic Americans, Asian Americans, and African Americans are at a higher risk than white people. In fact, lupus is three times more common in African American women than it is in white women. 

Common lupus symptoms 

Many lupus patients experience their symptoms as joint pain, a rash resembling a butterfly on their cheeks and nose, and raised red or discolored patches of skin. Other common signs of lupus, which may come and go as flare-ups, include: 

• Dry eyes 
• Extreme fatigue 
• Chest pain when taking deep breaths (pleuritis and other lung problems) 
• Pale or purple toes or fingers, called Raynaud's phenomenon 
• Swollen glands 
• Swelling around eyes and leg (edema) 

“Many people can control their symptoms, and it’s only a small subset of patients that have the more severe form of the disease,” says Malani. If you experience any of these symptoms, see your healthcare provider. 

How lupus affects the body 

Lupus can affect you in a number of different ways and people with the disease are more prone to a variety of health conditions. Some of the affected areas include: 

• Muscles and joints: Pain, stiffness, and muscles aches frequently accompany lupus, and arthritis is common. 
• Heart and blood vessels: Atherosclerosis and heart attacks occur at a higher rate than in the general population. Cardiovascular diseases kill more people with lupus than does lupus itself. 
• Kidneys: Around half of people with lupus also have kidney problems, which can affect the organs' ability to filter blood. Issues can often be addressed with medication and lifestyle changes. When kidney issues aren't treated, however, dialysis or a kidney transplant may be necessary. 
• Lungs: As with kidney problems, about half of people with lupus also develop lung issues, including pleurisy, pneumonitis (inflammation of air sacs), or scarring of lung tissue. 
• Nervous system: Headaches, seizures, depression, memory loss, and confusion frequently affect people with lupus. They are also more disposed to stroke. 

How to get diagnosed 

Lupus is a hard disease to diagnose because its symptoms are similar to other conditions, such as rheumatoid arthritis, fibromyalgia, and heart disease. But the earlier it’s detected, the more beneficial your treatment plan.

“Your doctor can also watch for new involvement in an organ,” says Malani. 

To determine whether or not you have lupus, your rheumatologist will likely run some blood tests first. The anti-nuclear antibody test (ANA) checks for antibodies in your blood. Antibodies are the body’s way of responding to an infection, and 98 percent of lupus patients have a positive ANA test. Your rheumatologist will also review your symptoms and family history and perform a physical exam to help make the diagnosis. 

If there is suspicion that internal organs, such as the kidneys or liver, are affected, other specialists, such as a nephrologist, who specializes in kidney diseases, may be called into help make the diagnosis.

“If the patient has a skin disease, we’ll call in a dermatologist,” says Malani. 

The best lupus treatment for you 

A rheumatologist focuses on the disease as a whole and creates an overall lupus treatment plan, working with other specialists as needed. Malani says that nearly all lupus patients end up taking hydroxychloroquine or chloroquine, two anti-malarial drugs.

“These medications help calm the overactive immune system,” says Malani. “They’re thought to reduce flares, decrease the risk of future organ damage, improve quality of life, and decrease mortality,” she says. If you are taking these immunosuppressive drugs, your healthcare provider will monitor you for retinal toxicity, a side effect that may cause irreversible vision loss. “It’s rare, but it can affect the eye, and someone on this drug needs regular eye exams,” says Malani. 

Other anti-inflammatory medications may be taken on a short-term basis: 

• NSAIDs like ibuprofen and naproxen 
• Steroids such as prednisone and methylprednisolone 

While medication is a common lupus treatment, Malani also recommends healthy habits to help better manage lupus symptoms. Those that can help include: 

• Managing your stress levels 
• Getting regular exercise 
• Maintaining a healthy diet 
• Getting a good night’s sleep 
• Adequate sun protection. Lupus patients can be especially sensitive to the sun and exposure to ultraviolet (UV) rays can trigger flare-ups. Wear sunscreen that blocks both UV-A and UV-B rays with SPF 55 or greater. 

Lupus and pregnancy 

If someone with lupus becomes pregnant, symptoms are trickier to treat because certain medications can become toxic to the baby.

“For patients who want to become pregnant, we try to make sure that their disease is quiet for at least six months before they become pregnant,” says Malani. If you’re already pregnant, work closely with your rheumatologist to ensure a successful and healthy pregnancy. 

The bottom line 

“People can go on to have a very good quality of life by managing their symptoms,” says Malani. If you feel your lupus symptoms worsen, talk to your rheumatologist about more advanced treatment options.