Lupus: 11 Things Doctors Want You to Know
- Top Lupus Doctors Explain a Complex ConditionLupus is a disease that can affect almost any part of the body and can be mistaken for conditions from arthritis to rosacea. Flu-like illness, joint pain and skin problems are only a few of the many symptoms of lupus, which can also lead to more serious complications like heart and kidney disease. Lupus is a complex but usually manageable illness, as these top experts explain.
- 1. “Your lupus diagnosis may take time.”“A diagnosis of lupus takes several months to years to reach, on average,” says Dr. Swamy Venuturupalli, rheumatologist at Cedars Sinai Hospital in Los Angeles. “The reason is the symptoms of lupus usually start out in one organ system and then move on to another. The diagnosis is often not made until several of these manifestations occur and then, finally, the patient or the doctor puts things together and says ‘This is lupus.’”
- 2. "Every patient with lupus has their ‘own’ disease.”“There are features in common, but a lot of things about lupus are very unique to each individual patient,” says Dr. Ellen Ginzler, a rheumatologist in Brooklyn, New York. “The symptoms can be very different from one person to another,” she says. “Not everyone has the same kind of lupus,” adds Dr. Venuturupalli. “There are many different types, many different flavors. But, more often than not, the disease is controllable and doesn’t cause long-lasting damage.” However, the wide range of symptoms means treatment must be tailored to the individual.
- 3. "We use a set of criteria to diagnose lupus, but our experience is key.”There is a test that can help diagnose lupus, but it’s only part of the picture. “An ANA test is a blood test that’s positive in the overwhelming majority of people with lupus, but not everybody with a positive test has lupus,” says Jane Salmon, MD, a rheumatologist with the Hospital for Special Surgery in New York. “The most classic symptom is the ‘butterfly’ rash across the cheeks and bridge of the nose, which is usually red,” says Dr Ginzler. Overall, there are 11 criteria doctors look for—four of which must be met for a diagnosis—but doctors say there is no substitute for experience with lupus due to its variability.
- 4. "If you’re borderline for lupus, we still want to see you periodically.”“Some people have what we call incomplete lupus or pre-lupus, where they have some of the features. They may have a positive ANA test and maybe arthritis, or the ANA and a rash, or something like that,” says Dr. Ginzler. “Some of those people are at risk to go on and develop real, true lupus and others will just continue on with this partial syndrome. But they should still be monitored and may be on maintenance medication that prevents them from developing more severe disease.”
- 5. "If you have lupus and plan to become pregnant, check with your doctor first.”Women of childbearing age are the most likely to develop lupus, so pregnancy must be carefully timed for women who have the disease. “If your disease is quiescent–not active–and you’re on low doses of steroids, you’re feeling good, all of your organs are working well, and you don't have active kidney disease, then your pregnancy is likely to be uncomplicated,” says Dr. Salmon, who studies lupus and pregnancy. If your lupus is flaring, however, you are at higher risk for preeclampsia, pre-term birth, or other complications.
- 6. "Remission is possible with lupus."Lupus typically flares up and subsides, but it can also fade away for long periods. “I would say about 60 to 70% of my patients have milder cases, so 30 to 40% have more serious cases,” says Dr. Venuturupalli. “I’ve seen the worst cases and the not-so-terrible cases, and I definitely see in my clinical practice that lupus can go into remission and sustain remission for many years,” he adds. “I have patients that have been really well–no symptoms and their lab tests are all normal—who I see maybe once every six months or once a year,” notes Dr. Ginzler.
- 7. "It’s important for people with lupus to live a healthy lifestyle."The leading cause of death from lupus is premature heart disease. “In some studies, women between the ages of 30 and 40 have been shown to be 50 times more prone to heart attack and stroke than their peers,” says Dr. Venuturupalli. “So, prevention of cardiovascular damage and disease is really important, and that requires a really healthy lifestyle.” “We always recommend a good balance diet—not fad diets—plus fluids and rest,” says Dr. Ginzler.
- 8. "There is only one approved drug for lupus, but there are many others in the pipeline."“Belimumab is the first new drug approved for lupus in 50 years. It’s an antibody that is infused,” says Dr. Salmon “It’s not approved for patients with severely active, life-threatening disease; it’s more for people with moderate disease.” However, she adds, “There are many, many things on the horizon. There are not even enough patients to enroll in clinical trials for all the new drugs. So this is an extremely exciting time for patients with lupus.”
- 9. "Older drugs can treat lupus too."People with lupus are often prescribed steroids, though doctors try to minimize their use due to their side effects, and there are other medications that are commonly used. “There’s one standard treatment that we put virtually everyone on now and that’s an antimalarial drug,“ says Dr. Ginzler. “It’s been found that, because of the way [antimalarials] work in the immune system, they have a lot of benefits for lupus patients,” she says. “Antimalarials are actually the only drug that may prevent your lupus from becoming more severe,” adds Dr. Salmon.
- 10. "We know people may doubt you have a disease."If you have lupus, you may find that others don’t understand or acknowledge your illness. “Lupus patients often complain that they hear ‘But you look so good’ from their friends, their family and even their physicians,’” says Dr. Venuturupalli. “But the problem is patients with lupus really don't feel good often and even if their internal organs are OK, they can still not be doing great.” Lupus organizations can offer support and information for patients to educate friends and family.
- 11. "You can help manage your lupus."“One of the things about lupus is you tend to establish the pattern you’re going to have within the first two to three years of the disease,” says Dr. Ginzler. “You have to pay attention to what is a trigger for you. It may even be a certain kind of food sometimes. Every patient needs to get in tune with their own body, figure out what flares [lupus], and try to avoid those things,” says Dr. Venuturupalli. “Diet, lifestyle changes and stress reduction are really important in controlling this condition. I would like to emphasize those as a physician. Being under the care of an experienced lupus doctor is also important to getting good outcomes.”
Lupus: 11 Things Doctors Want You to Know