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Dermatomyositis – the basics.

Dermatomyositis – the basics

Dermatomyositis (der-mat-o-my-o-site-is) (DM) happens when your immune system attacks certain muscle and skin cells. It can develop in children (usually between ages 5 and 15) and adults (usually between ages 40 and 60).

Symptoms may come on gradually or suddenly. It usually starts with a painful, itchy, purple-red rash, most often on the face and eyelids, knuckles, elbows, knees, chest, and back. Also, muscles get weak, especially the muscles that are close to the middle of your body (your trunk). These include the muscles in your hips, thighs, shoulders, upper arms, and neck. It can also cause tiredness (fatigue). As the disease progresses and muscles get weaker, some patients have trouble doing their normal activities. Some may have trouble swallowing, become short of breath, or become hoarse. Some people also have or can get conditions like Raynaud’s phenomenon, systemic lupus erythematosus, rheumatoid arthritis, heart or lung disease, and certain cancers.

There is no cure for DM but there are medications and other ways to help manage symptoms. Medications can help improve your skin and help your muscles get stronger and work better. Remember, it is important that you follow your treatment plan and take all of your medications as prescribed. Medications for DM may include:

  • Corticosteroids (steroids) are medications that weaken your immune system (immunosuppressant) to help stop immune cells from attacking. Prednisone is usually started at a high dose until your symptoms improve. Then the dose is gradually lowered (tapered). Steroids have side effects and are usually not prescribed for the long term.
  • Other immunosuppressants may be prescribed, especially if the steroids don’t work well enough or the side effects are too much for you. This includes medications such as azathioprine, methotrexate, cyclosporine, cyclophosphamide, tacrolimus, and/or mycophenolate mofetil.
  • Rituximab is another type of medication – a biologic that may be prescribed, especially if other therapies don't control your symptoms. Rituximab is given by intravenous (IV) infusion about every four weeks.
  • Antimalarial medications such as hydroxychloroquine (Plaquenil) may be prescribed if your rash doesn’t get better.
  • Immunoglobulin (Ig) is the newest medication approved for treating DM. Ig is given via IV infusion (IVIg). Your treatment plan for Ig usually starts with a higher dose given over several days and then lower doses every month for several months. Depending on how your body responds, you may be able to gradually stop taking Ig.
  • Sunscreen is important to help protect your skin from exposure to the sun. Wearing long sleeves, long pants, and hats are also helpful.

Physical therapy (PT) is important to help maintain or rebuild strength in your muscles. PT can also help lessen some of your joint stiffness and improve your flexibility. Learning about dermatomyositis, sticking to your treatment plan, and staying healthy are important. Your care team will create a plan to help relieve your symptoms and lower the chances of flare-ups. There are also things you can learn to do to help yourself manage your symptoms, such as staying out of the sun, keeping active to help keep and build muscle, eating healthy (a dietitian may help here), and resting when you’re tired.

You may want to visit these and other websites to learn more about DM, find support groups, and discover other ways to manage your day to day.

We’re here to help.

The more you understand your dermatomyositis, the easier it is to play an active role in your treatment. This is an important part of successfully treating and managing your condition. Your CVS Specialty CareTeam is available to answer your questions, help with medication side effects, and provide you with the information you need to effectively manage your condition. If you have questions or want to learn more, talk to your doctor or contact the CVS Specialty CareTeam.

This information is not a substitute for medical advice or treatment. Talk to your doctor or health care provider about your medical condition and prior to starting any new treatment. CVS Specialty assumes no liability whatsoever for the information provided or for any diagnosis or treatment made as a result.

CVS Specialty does not operate all the websites/organizations listed here, nor is it responsible for the availability or reliability of their content. These listings do not imply or constitute an endorsement, sponsorship, or recommendation by CVS Specialty.

This document contains references to brand-name prescription drugs that are trademarks or registered trademarks of pharmaceutical manufacturers not affiliated with CVS Specialty.

CVS Specialty® and Coram® CVS Specialty Infusion Services (Coram) work together to dispense and administer Ig therapy to patients. Learn more about how Coram is keeping you safe and healthy at home during infusion treatments.