Myositis Program

Myositis is an autoimmune muscle disease, where the immune system attacks its own tissue, causing inflammation in the muscles. This weakens the muscles over time and can cause pain. This chronic condition typically impacts the neck, shoulders, hips and back. The cause and the cure are elusive, but Michigan Medicine is making advances on the research front.

Patients often first notice the weakening by tripping or falling. Others experience trouble climbing stairs, getting up from a seat or reaching for objects overhead. Some also have unusual rashes, breathing problems or difficulty swallowing (dysaphgia).

There are five forms of myositis. They are:

  • Sporadic inclusion body myositis (sIBM): The most common form, it tends to impact those older than 50 and more often in men than women. It progresses more slowly than other forms and manifests in the smaller muscles of the hands and forearms, impacting a person’s grip and fine motor skills. Larger muscles decline as well.
  • Dermatomyositis (DM): It is more common among women. It is easiest to diagnose because it emerges on the skin before muscle weakness begins, whether through scaly, swollen patches or a rash that appears on the eyelids, cheeks, nose, back, upper chest, elbows, knees and knuckles.
  • Polymyositis (PM):  Striking after age 20, this affects more women than men. Not only does it hamper a patient’s ability to walk, run, or get up after a fall, but it often causes a chronic dry cough or difficulty swallowing (dysaphgia).
  • Necrotizing myopathy: This recently defined form is also called necrotizing autoimmune myopathy or immune-mediated necrotizing myopathy. (It was grouped under polymyositis but is now considered separate.)  It is marked by muscle cell death (necrosis). This manifests in muscle weakness but patients also complain of fatigue and overall general tiredness.
  • Juvenile Myositis (JM): The term for any version of myositis found in children under the age of 18. Typically pediatric patients have dermatomyositis or polymyositis forms. Some additional symptoms include trouble lifting the head, a hoarse voice, stomach aches, hardened lumps under the skin and irritability.

Michigan Medicine Myositis Program

Our Michigan Medicine Myositis Program is the only such program in the Midwest dedicated to the inflammatory myopathies. While considered rare, with about 75,000 U.S. residents living with myositis, the growing number of referrals to our physicians suggests a need for this dedicated group.

A multidisciplinary team of rheumatologists, neurologists, pulmonologists, pathologists, radiologists, nurses, physical therapists, registered dieticians and social workers collaborate on each case to provide patients with the most comprehensive care available.

The team coordinates care allowing patients to access various specialists consecutively on the same day.

Diagnosis

While a medical history and physical exam are paramount, our team may order the following tests to diagnosis myositis:

  • Blood tests to check muscle enzymes
  • Diagnostic tests may include magnetic resonance imaging (MRI), electromyogram (EMG) or nerve conduction velocity (NCV) studies
  • Muscle and skin biopsies are considered the most definitive test for diagnosis

Treatment

Our patients will receive the latest treatments and clinical trials to manage the disease and encourage it into remission. Currently, there are no FDA-approved therapies for any form of myositis.

Available treatments include:

  • Exercise and physical therapy: Moving the muscles reduces inflammation and fatigue while increasing stamina and muscle mass.
  • Medications: Corticosteroids such as prednisone, immunosuppressants (Medicines that tamps down activity in the immune system.) and immunoglobulin (human plasma derivative that contains antibodies) are the traditional line of defense.
  • Nutrition: Eating foods on an anti-inflammatory plan, sometimes called the Mediterranean diet, may minimize flare-ups.

Research

Clinicians are working to unlock the mysteries behind the cause, the best treatment and the cure for myositis. Rheumatologist  Elena Schiopu, M.D., who founded the Myositis Program, is collecting data on pain to better understand its patterns. As a clinician, she found pain prevents patients from exercising, which is one of the most effective treatments.

She plans on developing an exercise program, formally establishing guidelines to help with the condition. Part of the program will address motivation, as patients need to understand the importance of activity.

She and her team also are trying to understand the biological basis for myositis. They are examining different antibodies and how their presence is indicative of certain types of myositis developing. By taking it to a cellular level, she hopes to understand the immune system’s response to treatment.

Since so many symptoms involve the skin, whether rashes, swelling or bumps, the team is assessing the role the environment – air, water, food – has on myositis.

The Myositis Association (TMA) keeps a list of clinical trials for myositis and non-drug myositis studies taking place across the country.

Make an Appointment

Patients may schedule an appointment by calling 1-888-229-3065.