Lupus Erythematosus

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.

CARE AGREEMENT:

You 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.

RISKS:

There is no cure for lupus. Most people with lupus live long, productive lives. However, lupus makes some people so tired that they cannot work at times. Your chance of having a serious infection is increased because of lupus. Lupus can cause problems such as vision loss, heart disease, kidney failure, and stroke. Lupus can be life-threatening. Call your caregiver if you are worried or have questions about your medicine or care.

WHILE YOU ARE HERE:

Call button:

You may use the call button when you need your caregiver. Pain, trouble breathing, or wanting to get out of bed are good reasons to call. The call button should always be close enough for you to reach it.

Informed consent:

A consent form is a legal document that explains the tests, treatments, or procedures that you may need. Informed consent means you understand what will be done and can make decisions about what you want. You give your permission when you sign the consent form. You can have someone sign this form for you if you are not able to sign it. You have the right to understand your medical care in words you know. Before you sign the consent form, understand the risks and benefits of what will be done. Make sure all your questions are answered.

Tests:

You may need one or more of the following tests. The results of these tests help caregivers plan the best way to treat you. Lupus can affect many different body systems, so you may also need other tests. Ask your caregivers for more information about other tests you may need.

• Blood tests: You may need blood taken to give caregivers information about how your body is working. The blood may be taken from your hand, arm, or IV.
  
  
• Biopsy: A biopsy (BEYE-op-see) is when a piece of tissue is removed and sent to the lab for tests. You may need this test to check your skin, muscles, kidneys, or other organs for problems. During a biopsy, your skin is first cleaned. Caregivers put numbing medicine into your skin so you will have little pain. After the biopsy, you may need stitches to close the wound. A bandage is then put on the biopsy area.
  
  
• Chest x-ray: This is a picture of your lungs and heart. Caregivers use it to see how your lungs and heart are doing. Caregivers may use the x-ray to look for signs of infection like pneumonia, or to look for collapsed lungs. Chest x-rays may show tumors, broken ribs, or fluid around the heart and lungs.
  
  
• Echocardiogram: This test is a type of ultrasound. Sound waves are used to show the structure, movement, and blood vessels of your heart.
  
  
• EEG: This test is also called an electroencephalogram. Many small pads or metal discs are put on your head. Each has a wire that is hooked to a machine. This machine prints a paper tracing of brain wave activity from different parts of your brain. Caregivers look at the tracing to see how your brain is working.
  
  
• Heart monitor: This is also called an ECG or EKG. Sticky pads placed on your skin record your heart's electrical activity.
  
  
• Intake and output: Caregivers will keep track of the amount of liquid you are getting. They also may need to know how much you are urinating. Ask how much liquid you should drink each day. Ask caregivers if they need to measure or collect your urine.
  
  
• Joint x-ray: This is a picture of the bones and tissues in your joints. Joints are the places in your body where two bones meet. You may be given dye as a shot into your joint before the x-ray. This dye will help your joint show up better on the x-ray. A joint x-ray with dye is called an arthrogram.
  
  
• MRI: This test is also called magnetic resonance (REZ-oh-nans) imaging. MRI allows your caregivers to see inside your body. The kind of MRI test you get depends on the part of the body that may be causing you problems.
  
  
• Nuclear medicine scan: A special x-ray machine uses a computer to take pictures of a part of your body. Before taking the pictures, you are given a safe amount of radioactive dye. The dye is given through an IV in your vein. The dye helps the inside of your body show up better in the pictures.
  
  
• Pulse oximeter: A pulse oximeter is a device that measures the amount of oxygen in your blood. A cord with a clip or sticky strip is placed on your finger, ear, or toe. The other end of the cord is hooked to a machine. Never turn the pulse oximeter or alarm off. An alarm will sound if your oxygen level is low or cannot be read.
  
  
• Vital signs: Caregivers will check your blood pressure, heart rate, breathing rate, and temperature. They will also ask about your pain. These vital signs give caregivers information about your current health.
  
  
• Heart monitor: This test is also called an EKG or ECG. Sticky pads are placed on your skin to record your heart's electrical activity. An EKG gives information about how your heart is working. Lie as still as possible during the test.
  
  
• Ultrasound: This is a simple test using sound waves to look at the inside of your body. Pictures show up on a TV-like screen. The part of your body that needs an ultrasound test depends on your lupus symptoms.
  
  
• Urine sample: For this test you need to urinate into a small container. You will be given instructions on how to clean your genital area before you urinate. Do not touch the inside of the cup. Follow instructions on where to place the cup of urine when you are done.
  
  
• 24 hour urine test: During this test you will need to collect all of your urine for 24 hours. You will urinate into a container and the urine will be put into a jug. The jug will need to be kept cold. If you urinate during the night, you will need to save that urine. Caregivers will measure and record how much you urinate. At the end of 24 hours, the urine will be sent to a lab for tests.

Medicines:

These medicines are commonly used to treat lupus. You may receive these medicines alone or together, depending on your symptoms.

• Antibiotics: This medicine is given to help treat or prevent an infection caused by bacteria.
  
  
• 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.
  
  
• Antipyretics: This medicine is given to decrease a fever.
  
  
• 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.
  
  
  • Do not wait until the pain is severe to ask for your medicine. Tell caregivers if your pain does not decrease. The medicine may not work as well at controlling your pain if you wait too long to take it.
    
    
  • Pain medicine can make you dizzy or sleepy. Prevent falls by calling a caregiver when you want to get out of bed or if you need help.
  
  
• 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: This medicine may be given to decrease inflammation.

Other treatment options:

Your treatment options depend on the parts of your body affected by lupus and how bad your symptoms are. Your treatment may change if your lupus is not being controlled. You may have some of the following treatments while you are in the hospital.

• IV: An IV (intravenous) is a small tube placed in your vein that is used to give you medicine or liquids.
  
  
• Oxygen: You may need extra oxygen if your blood oxygen level is lower than it should be. You may get oxygen through a mask placed over your nose and mouth or through small tubes placed in your nostrils. Ask your caregiver before you take off the mask or oxygen tubing.
  
  
• Physical therapy: You may need to see a physical therapist to teach you special exercises. These exercises help improve movement and decrease pain. Physical therapy can also help improve strength and decrease your risk for loss of function.
  
  
• Relaxation therapy: Stress may cause pain, lead to illness, and slow healing. Relaxation therapy teaches you how to feel less physical and emotional stress. Deep breathing, muscle relaxation, and music are some forms of relaxation therapy.

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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.

Learn more about Lupus Erythematosus (Inpatient Care)