Polymyositis and Dermatomyositis: Care Instructions

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Polymyositis and dermatomyositis are problems with your immune system. Polymyositis attacks your muscles. Dermatomyositis attacks your skin and muscles.

These problems affect people in different ways. Most people have muscle weakness. Some people also have swelling or pain. Others get a rash.

Your symptoms depend on the muscles that are affected. It may be hard to swallow if your throat muscles are affected. And if your chest muscles are affected, it could be hard to breathe.

Medicines can help with swelling. They may also help control your immune system. Physical therapy and other exercises can also help.

Follow-up care is a key part of your treatment and safety. Be sure to make and go to all appointments, and call your doctor if you are having problems. It's also a good idea to know your test results and keep a list of the medicines you take.

How can you care for yourself at home?

  • You may get different medicines. Some may be for pain and swelling. Others may be for a rash. You may get some to control your immune system.
  • Take your medicines exactly as prescribed. Call your doctor if you think you are having a problem with your medicine.
  • Physical therapy can help keep your muscles strong and flexible. You also may get exercises from a doctor who specializes in diseases of the joints.
  • Talk to your doctor about an exercise program. Activity is important for your muscles, heart, and lungs. If your doctor says it is okay, you may be able to walk, swim, cycle, or take exercise classes. You also may be able to lift weights.
  • If your muscles get very sore, you may want to do less activity or change the type of activity.
  • Use canes, crutches, and any other assistive devices to help you get around.
  • Do not smoke or allow others to smoke around you. If you need help quitting, talk to your doctor about stop-smoking programs and medicines. These can increase your chances of quitting for good.

When should you call for help?

Call 911 anytime you think you may need emergency care. For example, call if:

  • It is very hard to breathe or swallow.

Call your doctor now or seek immediate medical care if:

  • Your muscle pain or weakness suddenly gets worse.

Watch closely for changes in your health, and be sure to contact your doctor if:

  • You have side effects from the medicines that help control the immune system. These may include:
    • Weight gain.
    • Mood changes.
    • Trouble sleeping.
    • Bruising easily.
  • You have any other problems with your medicine.

The Health Encyclopedia contains general health information. Not all treatments or services described are covered benefits for Kaiser Permanente members or offered as services by Kaiser Permanente. For a list of covered benefits, please refer to your Evidence of Coverage or Summary Plan Description. For recommended treatments, please consult with your health care provider.