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WHAT YOU NEED TO KNOW:
Lupus is an autoimmune inflammatory disease. This means that your immune system starts to attack your body instead of harmful germs. It is also called systemic lupus erythematosus. Lupus is a lifelong disease that affects all parts of your body. Lupus has active and quiet periods. The active periods, also called flares, are when you have symptoms. The quiet periods, or remission, are when you have few or no symptoms. A remission period may last months or years, or you may not have remission periods at all.
- Antimalarial medicine: This is used to relieve your joint and skin symptoms of lupus, such as rash and joint pain.
- Steroids: These decrease inflammation. They may be given as a pill or ointment.
- NSAIDs: These decrease swelling, pain, and fever. NSAIDs are available without a doctor's order. Ask your primary healthcare provider which medicine is right for you. Ask how much to take and when to take it. Take as directed. NSAIDs can cause stomach bleeding and kidney problems if not taken correctly.
- Immunosuppressive medicine: This is used to slow down your immune system. This will prevent your immune system from attacking your body.
- Cytotoxic medicine: This is used to decrease inflammation in muscles or joints. It also slows down your immune system.
- Take your medicine as directed. Call your healthcare provider if you think your medicine is not helping or if you have side effects. Tell him if you are allergic to any medicine. Keep a list of the medicines, vitamins, and herbs you take. Include the amounts, and when and why you take them. Bring the list or the pill bottles to follow-up visits. Carry your medicine list with you in case of an emergency.
Follow up with your primary healthcare provider as directed:
You will need to return regularly so caregivers can monitor your lupus. You may need to return weekly or monthly if you have active disease. You may need to return every 3 to 6 months if you are in remission. Ask how often you need to return. Write down your questions so you remember to ask them during your visits.
Manage your symptoms:
- Rest: Rest when you feel it is needed. Slowly start to do more each day. Return to your daily activities as directed.
- Protect your skin from UV light: Sunlight can make your lupus symptoms worse. Avoid the sun between 10 am and 4 pm, when the rays are strongest. Apply sunscreen with a SPF of 30 or more every 2 hours when you are outside. Do this even on cloudy days. Wear pants and long sleeves to cover your body. A hat with a wide brim can protect your face, head, and neck.
- Heat: Heat helps decrease joint pain or swelling. Apply heat on the painful joint for 20 to 30 minutes every 2 hours for as many days as directed.
- Ice: Ice helps decrease swelling and pain. Ice may also help prevent tissue damage. Use an ice pack, or put crushed ice in a plastic bag. Cover it with a towel and place it on the painful area for 15 to 20 minutes every hour as directed.
- Avoid others who are sick: You are at increased risk of a severe infection.
- Treat flares quickly: This will help prevent serious illness.
Prevent a lupus flare:
- Eat healthy foods: Healthy foods include fruits, vegetables, whole-grain breads, low-fat dairy products, beans, lean meats, and fish. Ask if you need to be on a special diet.
- Exercise: This will help decrease your symptoms and prevent depression. Ask your primary healthcare provider about the best exercise plan for you.
- Maintain a healthy weight: Ask your primary healthcare provider how much you should weigh. Ask him to help you create a weight loss plan if you are overweight.
- Do not smoke: If you smoke, it is never too late to quit. Ask for information about how to stop smoking if you need help.
- Manage your stress: Stress may slow healing and lead to illness. Learn ways to control stress, such as relaxation, deep breathing, and music. Talk to someone about things that upset you.
For support and more information:
- Lupus Foundation of America, Inc.
2000 L Street N.W., Suite 710
Washington , DC 20036
Phone: 1- 202 - 349-1155
Phone: 1- 800 - 558-0121
Web Address: http://www.lupus.org
- National Institute of Arthritis and Musculoskeletal and Skin Disease
National Institutes of Health
1 AMS Circle
Bethesda , MD 20892-3675
Phone: 1- 301 - 495-4484
Phone: 1- 877 - 226-4267
Web Address: http://www.niams.nih.gov
Contact your primary healthcare provider if:
- You have a flare of your lupus symptoms.
- You have a fever or headache.
- You feel like you are starting to get sick.
- You start to urinate less than usual.
- You are bleeding from your nose or gums.
- You bruise easily.
- You have questions or concerns about your condition or care.
Seek care immediately or call 911 if:
- You have blood in your urine, bowel movement, or vomit.
- You have severe abdominal pain.
- You are confused or feel dizzy or faint.
- You have numbness or weakness of your face or limbs, or have trouble seeing or speaking.
- You have a seizure.
- You have new, sudden vision changes.
- You have trouble breathing.
- You have chest pain, pressure, or discomfort that may spread to your arms, jaw, or back.
- Your leg feels warm, tender, and painful. It may look swollen and red.
- You suddenly feel lightheaded and short of breath.
- You have chest pain when you take a deep breath or cough.
- You cough up blood.
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The above information is an educational aid only. It is not intended as medical advice for individual conditions or treatments. Talk to your doctor, nurse or pharmacist before following any medical regimen to see if it is safe and effective for you.