“Lupus! Is it lupus?” Many remember “Seinfeld’s” George Costanza and his panic over the possibility of having lupus. The show exposed large audiences to the idea of lupus; however, it sensationalized a disease that can actually be well managed.
The medical community is continuing to learn about the pathophysiology and mechanisms behind lupus, as well as developing new treatment strategies for this complicated disease. However, one of our biggest goals as physicians is to find effective ways to provide patients with advice on the day-to-day problems they may encounter while living and coping with a chronic autoimmune disease.
Patients often struggle with repeated flare ups and other scattered symptoms of lupus. A question that always comes up is “What can I do to help prevent this from getting worse?” That is why no one leaves my office without a handful of pamphlets and a headful of solid information. Education helps lupus patients better manage their disease and live long, happy lives.
Protecting from the Outside In
Most people with lupus will experience some sort of skin involvement during the course of their disease. Sun exposure leads to DNA damage, which can trigger systemic inflammation. Therefore, it is especially important for people with lupus to practice effective sun safety. There are many options for people who enjoy the outdoors, such as SPF-protected clothing and adequate strength sunblock. Many people think they don’t need SPF when going outside in the winter or if they are outside for short periods of time; however, the sun is able to reach the skin regardless of the season and duration of exposure. I tell my patients to wear SPF every day. The best sunscreen is the one they actually don’t forget to use.
Raynaud’s Phenomenon
People with lupus may experience Raynaud’s, a symptom that occurs when there is temporarily reduced blood flow to fingers and toes. It often happens during exposure to cold temperatures or stress.
Keeping the whole body warm, not just the extremities, can help. It is wise to have chemical hand warmers ready in the winter months and, more importantly, to keep your core body temperature warm. To keep circulation flowing, ask your doctor about massage and exercises. Keep your doctor informed of your symptoms, as sometimes a prescription medication is necessary for patients who experience persistent and severe symptoms despite conservative measures. Also remember to contact your doctor if you experience an especially long-lasting episode with prolonged pain and/or with ulcer formation, because this requires more intense treatment and can sometimes be a medical emergency.
Heart Health
Cardiovascular disease is the No. 1 cause of death in people with lupus. Being overweight and having elevated blood pressure are the two most important predictors of heart disease in people who have lupus. Seeing a dietitian can help people learn to adopt a low-fat, low-cholesterol diet. It is also important to follow up with your primary care doctor and have your annual health assessment done, which may include a cholesterol level. If you have diabetes, your doctor will suggest ways to control it. Try to get involved in regular exercise programs to keep you active. If you are a smoker, the best thing you can do for your heart health is quit.
Immunizations
Lupus increases the risk for many infections. Many people with lupus also take immunosuppressive medicines to control their overactive immune system, and these medications decrease the body’s ability to respond to infection. Lupus can also alter the immune response (regardless of what medications one is taking), putting people at increased risk for infection.
Before patients start immunosuppressive therapy, they should make sure to discuss vaccines with their physician. The seasonal flu vaccine and the pneumonia vaccine are considered safe and effective in most lupus patients, so do not be surprised if your doctor brings these up with you at your visit. Live vaccines, however, should be discussed on a case-by-case basis with your rheumatologist.
Another way to protect yourself from infection is by washing your hands often and minimizing close contact with sick family members during cold and flu season if possible, especially if you are on medications that suppress your immune system.
Lupus and Pregnancy
It is a long-standing myth that women with lupus should never become pregnant. In fact, women with lupus have an excellent chance of a successful pregnancy when symptoms are in remission and when patients work closely with rheumatologists and specialists in maternal-fetal medicine.
Women who are contemplating pregnancy should talk to their doctor three to six months before they plan on getting pregnant if possible. This gives the rheumatologist a chance to evaluate the safety of the patient’s medications and whether these need to be adjusted/changed so as to minimize risk of harm to the baby. Schedule regular visits, and report symptoms of flare as soon as they occur.
Living Well
Although there is no cure for lupus, I have seen patients go years without major flares, and many of them are able lead productive and happy lives. Learn at your own pace, and lean on family and friends for support. When that is not enough, attend lupus support groups. The Lupus Foundation of America is a group I often tell my patients about that has local chapters in most major cities. Don’t forget that emotional healing and the physical healing go hand-in hand.
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Living Well With Lupus originally appeared on usnews.com
