Dos and don'ts for living well with lupus
We asked members of the Lupus Foundation of America’s Medical-Scientific Advisory Council for their suggestions on how to get lupus under control—and keep it that way.
As you read through this list of do’s and don’ts, think about which ones you can put a check mark next to. Then, consider what might be holding you back from checking off the others.
- Do follow medication instructions. Taking medicine as directed by your doctor was the number one suggestion we received. Dr. Brad Rovin puts it simply: “Adherence is the most important aspect of management of lupus.” And Dr. Bevra Hahn advises, “Let your doctor know immediately if you think you are not tolerating treatments.” You will be better informed if you know what medication is being prescribed and how it works, so don’t be shy about asking your doctor or pharmacist for that information.
- Do attend scheduled doctor visits and get needed lab work. Research has confirmed that people with lupus who see their rheumatologist regularly have better health outcomes. “Lupus kidney disease can be relatively silent,” says Dr. Rich Furie, “but so can disease activity in the blood, such as thrombocytopenia and autoimmune hemolytic anemia.” This is why seeing your lupus health care provider very regularly is a ‘must.’ Even if you are feeling well, lupus can act up in silent ways that only lab test results can confirm.
- Do learn about lupus. The more you know, the more you’ll feel more in control. “I advise patients to get involved in their care, to learn more about lupus,” says Dr. Karen H. Costenbader, “and to get their families involved in knowing about lupus and recognizing the signs and symptoms of the disease.” It’s also important to know as much as you can about what triggers a flare for you. The more you can know what you were doing or experiencing when your flare developed, and what you think your particular triggers may be, the better you will be at staying flare-free.
- Do be open with your doctor. Let your rheumatologist know what’s happening with you. “It is crucial that patients communicate with their doctors if they are having any symptoms that could be construed as lupus activity,” says Dr. Furie. Whether you think you’re getting an infection, or having side effects from a new treatment, or something has caused you to stop taking your medication, your doctor wants to know. No matter what the topic, be open, even if it’s an embarrassing subject, or you’re not sure if it’s important.
- Do get the right amount of exercise. “Exercise is important for so many reasons,” says Dr. Stacy P. Ardoin, “including mental health, weight control, bone health, and cardiovascular health.” The kind of activity isn’t as important as the fact that you’re getting some sort of exercise. Make it fun, change it up, take a friend—just as long as you do something every day. Don’t forget to include some strength training.
- Don’t smoke—and if you smoke now, commit to quitting. “If you need one more reason to stop smoking, there is new evidence that smoking possibly could trigger lupus flares, and smoking may also trigger lupus onset,” warns Dr. Costenbader. Studies have confirmed that smoking worsens many aspects of lupus, in addition to causing cancer and heart disease. Commit to quitting—ask any of your doctors for help.
- Don’t let yourself become overtired. “Set your schedule to allow rest, and allow other people to help you with this,” counsels Dr. Hahn. Also make sure you are getting adequate sleep and some kind of physical exercise each day. Above all: learn to say “yes” to your body when it asks for a time out, and “No, not today” to some of the more strenuous demands on your time.
- Don’t plan a pregnancy without talking to your doctor. “If the patient is in her reproductive years, I discuss from the outset the importance of contraception and pregnancy planning,” says Dr. Alarcón. Because of how some medications can affect the fetus, it’s essential to discuss pregnancy planning with your rheumatologist six months before you start thinking about conceiving. It’s also important for your health to conceive when your lupus is acting up as little as possible. So, working with your doctor is key. Be sure to keep your primary care physician in the loop—especially if he or she is the one prescribing your contraceptive: some women with lupus may have limitations on products containing hormones.
- Don’t allow stress to take over your life. “Do what you can to lower stress,” advises Dr. S. Sam Lim. Use mindfulness techniques, such as meditation and visual imaging, and movement exercises, such as yoga or Tai Chi. Spend time with positive, supportive people, and skip the ones who upset you or drain your energy. Stay involved in activities and hobbies that make you happy.
- Don’t forget to use sunscreen. Not just in the summer but all year ’round, and “particularly if you are photosensitive,” urges Dr. Jennifer Grossman, as UV radiation can cause a flare and/or skin rashes. Be aware also that some medications increase your sensitivity to UV. Your doctor or pharmacist can tell you more.
So where do you go from here?
A great way to get started is to share this list with your doctors and ask about any of the dos and don’ts you find challenging.
“Lupus has a much better prognosis than in years past. Although the disease has no cure, the disease can be controlled. But doing so will require the joint work of both patient and physician.”
Our appreciation and thanks to these MSAC members for their insightful suggestions: Graciela S. Alarcón, MD, MPH; Stacy P. Ardoin, MD, MHS; Karen H. Costenbader, MD, MPH; Rich Furie, MD; Jennifer Grossman, MD; Bevra Hahn, MD; S. Sam Lim, MD, MPH; and Brad Rovin, MD, FACP, FASN.