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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.
WHILE YOU ARE HERE:
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.
Ask your healthcare provider about these and other tests you may need to help plan your treatment:
- Blood tests: Your blood will be taken to monitor your lupus.
- 24 hour urine test: Your urine will be collected for 24 hours, even at night. You will urinate into a container and the urine will be put into a jug. Healthcare providers will measure and record how much you urinate. At the end of 24 hours, the urine will be sent to a lab for tests.
- Echocardiogram: This test is a type of ultrasound. Sound waves are used to show the structure, movement, and blood vessels of your heart. It is used to check for fluid around 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.
- EKG: This test records the electrical activity of your heart. It is used to check for abnormal heart rhythms.
- MRI: This scan uses powerful magnets and a computer to take pictures of your brain. An MRI may show damage to your brain. You may be given dye to help the pictures show up better. Tell the healthcare provider if you have ever had an allergic reaction to contrast dye. Do not enter the MRI room with anything metal. Metal can cause serious injury. Tell the healthcare provider if you have any metal in or on your body.
- Ultrasound: An ultrasound uses sound waves to show pictures on a monitor. An ultrasound may be done to show problems with your blood flow.
- 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.
- 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.
- 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.
- 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 have 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.
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.
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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.