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WHAT YOU NEED TO KNOW:
What is lupus?
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.
What increases my risk for lupus?
The cause of lupus is unknown. You are at increased risk if you are female, take hormones, or have a family member with lupus. Certain medicines, such as hydralazine and minocycline, can increase your risk for lupus. Ask your caregiver for more information about what increases your risk for lupus.
What are the signs and symptoms of lupus?
- Fever over 100°F (38°C)
- Tiredness, weight loss, or headache
- Rash shaped like butterfly wings
- Sensitivity to sunlight
- Hair loss
- Mouth or nose sores
- Painful joints
- Chest pain or cough when you take a deep breath
- Abdominal pain, nausea, or vomiting
How is lupus diagnosed?
- Blood tests: Your blood will be tested for infection, inflammation, or anemia (low red blood cells).
- Urine tests: Your urine will be tested for protein or blood.
- X-rays: This is a picture of your joints or chest to check for infection or extra fluid.
- Biopsy: Tissue may be taken from your skin, muscle, or kidney to check for the cause of your lupus.
How is lupus treated?
There is no cure for lupus. Lupus may be triggered by stress, ultraviolet light, or an infection, such as a cold. It can also be triggered by cigarette smoke or foods you eat. The following will help control your symptoms:
- 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, IV, or ointment.
- NSAIDs: These decrease swelling, pain, and fever. NSAIDs are available without a doctor's order. Ask your caregiver 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 help your immune system not attack your body.
- Cytotoxic medicine: This is used to decrease inflammation in muscles or joints. It also slows down your immune system.
What are the risks of lupus?
- You may be so tired that you cannot work at times. Your risk for a serious infection is increased. You may develop vision loss. You may become depressed or anxious. Your fingers may turn pale or blue when they are cold. This is called Reynaud syndrome. You may become forgetful or have trouble concentrating. You may develop headaches, vision problems, or have a seizure.
- You may develop kidney disease or kidney failure. You may have high blood pressure or narrowing of your arteries. This can lead to heart disease or heart failure. You may have bleeding problems, such as anemia. You may get a blood clot in your leg. The clot may travel to your heart or brain and cause life-threatening problems, such as a heart attack or stroke.
How can I manage my 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 or 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.
How can I help 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 caregiver about the best exercise plan for you.
- Maintain a healthy weight: Ask your caregiver 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.
Where can I find 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
When should I contact my caregiver?
Contact your caregiver 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.
When should I seek immediate 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.
Care AgreementYou have the right to help plan your care. Learn about your health condition and how it may be treated. Discuss treatment options with your caregivers to decide what care you want to receive. You always have the right to refuse treatment. 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.
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