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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.
AFTER YOU LEAVE:
Take your medicine as directed.
Call your primary healthcare provider if you think your medicine is not helping or if you have side effects. Tell him if you are allergic to any medicine. Keep a list of the medicines, vitamins, and herbs you take. Include the amounts, and when and why you take them. Bring the list or the pill bottles to follow-up visits. Carry your medicine list with you in case of an emergency.
- 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 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: You may need medicine to take away or decrease pain.
- Learn how to take your medicine. Ask what medicine and how much you should take. Be sure you know how, when, and how often to take it.
- Do not wait until the pain is severe before you take your medicine. Tell caregivers if your pain does not decrease.
- Pain medicine can make you dizzy or sleepy. Prevent falls by calling someone when you get out of bed or if you need help.
Ask for information about where and when to go for follow-up visits:
For continuing care, treatments, or home services, ask for more information.
- 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.
- 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.
- Occupational therapy: Occupational therapy (OT) uses work, self-care, and other normal daily activities to help you function better in your daily life. OT helps you develop skills to improve your ability to bathe, dress, cook, eat, and drive. You may learn to use special tools to help you with your daily activities. You may also learn new ways to keep your home or workplace safe.
- Speech therapy: A speech therapist may work with you to help you talk or swallow.
- Exercise: Exercise makes the heart stronger, lowers blood pressure, and helps keep you healthy. Begin to exercise slowly and do more as you get stronger. Talk with your primary healthcare provider before you start an exercise program.
- You may feel safer if you use a 4 prong (pointed) cane or a walker when walking. To keep from falling, remove loose carpeting from the floor. Using chairs with side arms and hard cushions will make it easier to get up or out of a chair. Put grab bars on the walls beside toilets and inside showers and bathtubs. These will help you get up after using the toilet or after bathing. Grab bars will also help to keep you from falling in the shower. You may want to put a shower chair inside the shower.
How should I protect my skin?
- Wear sunscreen that has sun protectant factor 15 (SPF15) or higher. The sunscreen should also have UVA and UVB protection. Follow the directions on the label when using sunscreen. Put on more sunscreen if you are in the sun for more than an hour. Reapply sunscreen often if you go swimming or are sweating a lot.
- Stay out of the sun between 10 AM and 4 PM. The sun is strongest and most harmful to your skin between these times.
- Avoid being in the sun at high altitude and around the snow, sand, and water.
- Protect your lips by using lipsticks and lip balms that have sunscreen in them.
- Wear long-sleeved shirts and pants to protect your arms and legs when you are out in the sun. Wear a hat with a wide brim to protect both your face and neck.
- Do not use tanning booths. These can damage your skin as much as the sun.
Where can I find support and more information?
Dermatomyositis is a life-changing disease for you and your family. Accepting that you have it is hard. You and those close to you may feel angry, sad, or scared. These are normal feelings. Talk to your caregivers, family, or friends about your feelings. You may also want to join a support group. This is a group of people who also have a skin disease. Contact the following for more information:
- The Myositis Association
1233 20th St. NW, Ste 402
Washington, DC , 20036
Phone: 1- 202 - 887-0088
Web Address: http://www.myositis.org
CONTACT A CAREGIVER IF:
- You are having trouble swallowing.
- You are weaker than usual.
- You have questions about your disease, medicine, and treatment.
SEEK CARE IMMEDIATELY IF:
- You are having trouble breathing.
- You are very sad, and feel that you cannot cope with your disease.
- You have a fever.
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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.