Living With Systemic Lupus Erythematosus (Lupus)

Living with lupus can be physically and emotionally hard. At times, you may think that your friends, family, and coworkers do not understand how you feel. You may experience sadness and anger. A good place to start managing the disease is working with your doctor to determine the best treatment plan and taking your medications as prescribed. But keep in mind, many people with lupus live wonderfully happy lives, and therefore a positive outlook is very important.

You can do several things to help you live with lupus:

• Learn to recognize the warning signs of a flare so that you and your doctor might reduce or prevent them. Warning signs include:
  • Increased tiredness.
  • Joint swelling.
  • Pain.
  • Rash.
  • Fever.
  • Abdominal pain.
  • Headache.
• Eat a healthy well-balanced diet rich in fruits, vegetables, and whole grains.
• Exercise to help keep your body strong; however, talk to your doctor before starting an exercise program.
• If you smoke, quit. This will help lower your risk for heart disease that can be a complication of lupus.
• Protect yourself from the sun – sometimes, exposure to the sun can cause a flare. Wear protective clothing, such as a hat or long-sleeved shirts, and use sunscreen any time you go outside.
• Reach out to online and community support groups.
• Keep the lines of communication open. Talk to your family and friends about your lupus to help them understand the disease.
• Ask for help when you need it.
• Take a break from focusing on the disease, and spend some time doing activities you enjoy.
• Lower your stress – try meditating, reading, or deep breathing. Remember, stress can trigger a flare.
• Make changes if you need to in your work environment so you can try to continue to work, such as:
  • Creating a flexible schedule – for example, work from home or start the workday later.
  • Working part time.
  • Adjusting your work area so that you are more comfortable.

Most people with mild disease or who are in remission can usually participate in the same life activities they did before they were diagnosed.

Pregnancy and Contraception for Women With Lupus

Most women with lupus can have healthy pregnancies if the disease is under control. If you start to plan a pregnancy, talk to your doctor so you can be as healthy as possible before becoming pregnant. Close monitoring during pregnancy is essential, especially if you have low platelets, antiphospholipid antibodies, anti-SSA/Ro antibodies, high blood pressure, lung or heart problems, or kidney disease.

It is important to find an obstetrician who manages high-risk pregnancies and has experience working with women who have lupus. Some medications used to treat lupus are not compatible with pregnancy. It is important that you discuss your lupus medications with your doctors before getting pregnant to ensure that all of your medications are safe to use during pregnancy.

Research shows that birth control pills do not increase the risk for severe flares among women with lupus, but estrogen-containing pills are not recommended for women with antiphospholipid antibodies. Talk with your doctor about your antibody test results before starting oral contraceptives.

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