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WHAT YOU SHOULD KNOW:
Dermatomyositis (der-MAH-to-mi-o-SI-tis) is a disease that affects your muscles. With this disease you have muscle inflammation (swelling) and skin rashes. The swelling often causes the muscles of your arms and legs to grow weaker. Skin rashes are often found on the upper eyelids, cheeks, upper chest, elbows, knees, and knuckles of the hands. You may also get a fever, scaly patches over your knuckles, trouble swallowing or breathing, and muscle pain. These symptoms slowly get worse over time. Tests include muscle and skin biopsies (samples), an MRI, and blood tests. Treatment may include medicine and special therapy. With treatment you may be able to continue your usual activities for a longer period of time.
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.
Dermatomyositis may get worse if it is not treated. . This disease may make it hard for you to do your usual activities. It may also affect your heart, swallowing, and breathing, which can be life-threatening. With this disease your risk of getting cancer is higher. Ask your caregiver if you have questions about your disease, medicine, or treatment.
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.
This exercise should be done once an hour to keep you from getting a lung infection. Deep breathing opens the tubes going to your lungs. Slowly take a deep breath and hold the breath as long as you can. Then let out your breath. Take 10 deep breaths in a row every hour while awake. You may be asked to use an incentive spirometer to help you with this. Put the plastic piece into your mouth and slowly take a breath as deep and as long as you can. Hold your breath as long as you can. Then, let out your breath.
This is also called an ECG or EKG. Sticky pads placed on your skin record your heart's electrical activity.
You may have the following:
- Anti-itching medicine: Caregivers may give you medicine to help keep your skin from itching. This medicine may be given in an IV, as a shot, by mouth, or as a skin lotion. Sometimes this medicine can make you sleepy.
- Antimalarial medicine: These medicines may help to decrease your symptoms, such as skin rashes.
- Steroids: This medicine may be given to decrease inflammation.
- Immunosuppressives: The immune system may see normal cells as abnormal and attack them. When normal cells are attacked, it causes the symptoms of dermatomyositis. These medicines may be given to slow down the attack on muscle cells by the immune system. Do not stop taking these medicines without your caregivers OK. Stopping on your own can cause problems.
- 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.
You may need the following:
- Biopsy: Your caregiver will collect samples of your muscles and skin, which are sent to the lab for tests. Before the tissue is removed, your skin will be cleaned, and medicine may be used to numb the area. After the biopsy, you may need stitches to close the wound. A bandage may cover the biopsy area.
- Blood tests: Creatine kinase is a substance made by injured muscles. Blood tests check for this substance.
- Electromyography: This is also called an EMG. An EMG is done to test the function of your muscles and the nerves that control them. Electrodes (wires) are placed on the area of muscle being tested. Needles that enter your skin may be attached to the electrodes. The electrical activity of your muscles and nerves is measured by a machine attached to the electrodes. Your muscles are tested at rest and with activity.
- Magnetic resonance imaging: This test is also called MRI. An MRI shows caregivers areas inside your body. During the MRI, pictures are taken of your muscles and skin. Caregivers use these pictures to look for muscle changes or injury.
- Eating and swallowing: Your doctor may ask a swallowing therapist to work with you if you have trouble swallowing. This person has special training to help people learn safer ways to swallow. The swallowing therapist will also help you learn which foods and liquids are safe to eat and drink.
- You may be fed by an IV or a nasogastric (NG) tube if your swallowing problems are very bad. An NG tube is put in through your nose and goes down into your stomach. The tube may also go directly from the outside of your body into your stomach. This is called a gastrostomy tube.
- You may be given thickened liquids to drink because they may be easier for you to swallow. A special powder is used to thicken liquids. You may also be able to eat softer (mashed) foods. You may be able to eat what you usually eat when your swallowing gets better.
- Therapy: You may have the following:
- Hydrotherapy: This is a gentle water exercise program. It may strengthen muscles that are not damaged by dermatomyositis.
- Massage and stretching: Gentle body massages and stretching may help keep you from getting contractures. A contracture is a shortened muscle that may make a joint difficult to move.
- Therapy: A physical therapist and an occupational therapist may exercise your arms, legs, and hands. They may also teach you new ways to do things around the house. A speech therapist may work with you to help you talk or swallow.
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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.