Dermatomyositis

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:

Medicines:

• Keep a written list of the medicines you take, the amounts, 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 use 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. If you are taking medicine that makes you drowsy, do not drive or use heavy equipment.

• 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: Steroid medicine may be given to decrease inflammation, which is redness, pain, and swelling.
  
  
• 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 be given medicine to take at home to take away or decrease pain. Your caregiver will tell you how much to take and how often to take it. Take the medicine exactly as directed by your caregiver. Do not wait until the pain is too bad before taking your medicine. The medicine may not work as well at controlling your pain if you wait too long to take it. Tell caregivers if the pain medicine does not help, or if your pain comes back too soon.

Ask your caregiver when to return for a follow-up visit. Keep all appointments. Write down any questions you may have. This way you will remember to ask these questions during your next visit.

Therapy:

• 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: Your caregiver may want you to go to physical therapy. A physical therapist will help you with special exercises. These exercises help make your bones and muscles stronger.
  
  
• Occupational therapy: Occupational therapy (OT) uses work, self-care, and play activities to help you in your daily life. OT teaches special skills for bathing, dressing, cooking, eating, or driving. An occupational therapist may help you choose tools to use, and suggest ways to keep your home or workplace safe. You and your therapist will plan a therapy program that is right for you.
  
  
• Speech therapy: A speech therapist may work with you to help you talk or swallow.

Activity:

• Exercise: Talk to your caregiver before you start exercising. Together you can plan the best exercise program for you. It is best to start slowly and do more as you get stronger. Exercising makes the heart stronger, lowers blood pressure, and keeps you healthy.
  
  
• 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 (increased body temperature).

Copyright © 2008 Thomson Healthcare Inc. All rights reserved. Information is for End User's use only and may not be sold, redistributed or otherwise used for commercial purposes.

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.

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