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WHAT YOU SHOULD KNOW:
- Lupus (LOO-pus) is also called systemic (sis-TEM-ik) lupus erythematosus (er-i-thee-mah-TOH-sus), or SLE. Lupus may cause problems with your skin, joints, blood, brain, heart, lungs, and kidneys. Lupus is a lifelong disease that can be mild, serious, or even life-threatening. There is no cure for lupus, but its symptoms and long-term damage can be decreased with treatment.
- Lupus is a disease that may have active and quiet (remission) periods. The active periods, sometimes called "flares" or "relapses," are when you have symptoms of lupus. A remission period is when you have few or no symptoms of the disease. A remission may last months or years, or you may not have remission periods at all.
- Keep a written list of the medicines you take, the dose, and when and why you take them. Bring the list of your medicines or the pill bottles when you see your caregivers. Learn why you take each medicine. Ask your caregiver for information about your medicine. Do not take any medicines, over-the-counter drugs, vitamins, herbs, or food supplements without first talking to caregivers.
- Always take your medicine as directed by caregivers. Call your caregiver if you think your medicines are not helping or if you feel you are having side effects. Do not quit taking your medicines until you discuss it with your caregiver.
- These medications are commonly used to treat lupus. You may receive these medicines alone or together, depending on your symptoms.
- __ Antibiotics: You may be given antibiotics (an-ti-bi-AH-tiks) to treat or prevent an infection caused by germs called bacteria. If you are taking antibiotics, take them until they are all gone even if you feel better. You may also need to take antibiotics before dental cleanings and other dental or medical procedures. Always tell caregivers and your dentist that you have lupus.
- __ Antimalarial medicine: Antimalarial (an-tee-mah-LAR-ee-al) medicine may be given to treat the joint and skin symptoms of lupus. Even though this medicine is used to treat malaria, it is also given to treat lupus.
- __ Cytotoxic medicine: Cytotoxic (seye-toh-TOK-sik) medicine may be given to decrease inflammation (redness and swelling) in muscles or joints. Cytotoxic medicine also slows down the immune system.
- __ Fever medicine: This type of medicine is given to help lower your body temperature. Common medicines used to lower temperature include acetaminophen (a-seet-a-MIN-oh-fen) and ibuprofen (eye-bu-PROH-fen). Lowering your body temperature may help you feel better.
- __ Immunosuppressive medicine: With lupus, your immune system attacks your own body when it should not. Immunosuppressive (im-u-noh-su-PRES-iv) medicine may be given to slow down the immune system.
- __ Pain medicine: Caregivers may give you medicine to take away or decrease your pain. Medicine may be taken regularly, or only when you need it. Tell your caregiver if your pain does not decrease enough for you to feel better. Do not wait to take your pain medicine until the pain is very bad. The medicine may not work as well at controlling your pain if you wait too long to take it. If you are taking medicine that makes you drowsy, do not drive or use heavy equipment.
- __ Nonsteroidal anti-inflammatory medicine: Nonsteroidal (non-ster-OID-al) anti-inflammatory (an-tee-in-FLAM-ah-tohr-ee) medicine may help decrease pain and inflammation in muscles or joints. This family of medicine is also called "NSAIDS."
- __ Steroids: There are many different reasons to take steroids (STER-oids), such as to decrease inflammation. This medicine can help a lot but may also have side effects. Be sure you understand why you need steroids. Do not stop taking this medicine without your caregivers OK. Stopping on your own can cause problems.
Follow-up visit information:
- Write down questions you have about your illness and how it is treated. This way you will remember to ask these questions during your next visit.
- It is very important for people with lupus to see a caregiver regularly. Regular checkups may help your caregiver catch serious problems early. Ask your caregiver how many times a year you should have a checkup.
Activity and home care:
- Rest: Get plenty of rest, especially during a flare of lupus symptoms. Rest is one of the most important things you can do to help your lupus symptoms.
- Avoid sunlight: Sunlight can make your lupus symptoms worse. Use sunscreen with a sun-protection factor (SPF) of 15 or more. Put it on your skin before you go outside. Put more on every two hours when you are out in the sun. If you are swimming, put more on each time you get out of the water. If you burn easily, wear loose thin shirts with long sleeves, pants, a hat, and shoes while outside. Try to stay out of the sun when it is at its brightest, usually between 10 a.m. and 3 p.m.
- Heat: Use heat to decrease pain or swelling in your joints. Use a heating pad (turned on low), a hot water bottle, or sit in a warm water bath. Do this for 20 minutes out of every hour, for as long as you need it. Do not sleep on the heating pad or hot water bottle. This can cause a bad burn.
- Ice: Use ice to decrease joint pain or swelling. Put the ice in a plastic bag and cover it with a towel. Place this over the injured area for 20 minutes out of every hour, for as long as you need it. Do not put the ice pack directly on the skin because you can get frostbite.
How can I live a healthy lifestyle?
- Control other illnesses: Stay away from people who have colds or the flu. Get shots to keep from getting the flu and pneumonia (noo-MOH-nyah). Try to stay away from large groups of people. This decreases your chance of getting sick and having a lupus flare-up. If you think you are getting sick, call your caregiver. The earlier a lupus flare-up or an infection is treated the more easily it can be controlled. If you have other illnesses like diabetes or high blood pressure, you need to control them. Take medicines as directed.
- Avoid alcohol: Do not drink alcohol. Alcohol can damage your brain, heart, and liver. Almost every part of your body can be harmed by alcohol. Drinking alcohol can also make your lupus worse.
- 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.
For 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 A CAREGIVER IF:
- You have a fever.
- You have new symptoms that you are worried about.
- You have questions or concerns about lupus or your lupus medicine.
- You have new trouble breathing while resting.
- You are having a flare of lupus symptoms.
- You have a bad headache.
- You feel like you are starting to get an illness or infection.
- You have any problems urinating.
- You have bleeding from your nose or gums, or blood in your urine, BM, or vomit (throw up).
- You notice that you are bruising more than usual.
SEEK CARE IMMEDIATELY IF:
- You have any bleeding that cannot be controlled, including bleeding from your rectum (rear-end) or vomiting blood.
- You have bad abdominal (belly) pain.
- You are confused or less alert.
- You faint (pass out) or feel like fainting.
- You feel dizzy, have numbness or weakness of your face or limbs, or have trouble seeing or speaking.
- You have a seizure (convulsion).
- You have new, sudden vision changes.
- You have signs of a heart attack , which may include one or more of the following:
- Chest pain, pressure, or discomfort that may spread to your arms, jaw, or back.
- Trouble breathing.
- Sweating a lot for no reason. You may also have nausea (feel sick to your stomach).
- Unexplained chest pain or pressure is an emergency. Call 9-1-1 or 0 (operator) for an ambulance to get to the nearest hospital or clinic. Do not drive yourself!
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