Myositis Program

The Myositis Program at the University of Chicago Medicine is the only program in Illinois completely devoted to the care of patients with myositis.

What is myositis?

Myositis refers to conditions that cause inflammation in the muscles. Symptoms may include muscle weakness and pain, but affected patients also may experience symptoms in many other organs, as well as rashes, joint pains and shortness of breath.

When we do not know the cause of myositis or believe it to be caused by an autoimmune disease, we call these conditions idiopathic inflammatory myopathies (IIMs).

IIMs include the following subtypes:

How is myositis diagnosed?

We use a multidisciplinary approach to diagnose and treat myositis. This involves bringing in many kinds of specialists to study a patient’s situation and create the best plan for care. Our team often includes a rheumatologist who specializes in myositis, dermatologist, neurologist, pulmonologist, and physical therapist.

Diagnosis begins with a rheumatologist taking your complete medical history, including family history, followed by a physical exam. At your first visit, we ask you to bring the following:

Medical notes, including hospital admission, progress and discharge notes
List of medications
Imaging studies reports and physical discs
Full reports on pulmonary breathing tests
Reports on tissue biopsies such as skin, muscle and lungs, as well as physical tissue slides of paraffin embedded tissue blocks
Contact information for the patient’s local medical specialists

Based on your symptoms, we may order additional tests, such as magnetic resonance imaging (MRI) of your muscles, CT scans of your chest and breathing tests. We may take small samples of muscle tissue to look for inflammation and damage in the affected muscles. Some blood tests also can be helpful in providing additional information about the diagnosis.

How is myositis treated?

Once we arrive at a diagnosis and classify the type of myositis, we develop a comprehensive medical plan to help you control the disease and improve your quality of life.

This may include:

Immunosuppression medications such as corticosteroids (prednisone), methotrexate, mycophenolate mofetil, azathioprine, tacrolimus, immunoglobulins and rituximab
Aggressive physical therapy to regain muscle function for those who are extremely disabled
Guidance on sun protection for those with skin rashes sensitive to sunlight
Oxygen and respiratory therapy for those with severe lung diseases

Research and collaborations

In addition to providing state-of-art clinical care to patients with myositis, our team is also devoted to research in myositis. We work closely with the Gwen Knapp Center for Lupus and Immunology Research at the University of Chicago, a leading immunology research program focused on integrating basic science, translational and clinical research.

All our patients with myositis are invited to join the University of Chicago Myositis Registry. This registry helps our scientists to advance the field of myositis research and collaborate with national and international initiatives aimed at improving our understanding of the causes and different manifestations of myositis.

Patients with myositis with associated interstitial lung disease also are invited to participate in the University of Chicago Interstitial Lung Disease Registry.

We are a partner of the Myositis Clinical Trial Network (MyoConnect), a collaboration of over 50 programs in the United States and Canada devoted to the development of clinical trials designed to identify more effective and safer treatment options for myositis.

Our program is also a collaborator of the American College of Rheumatology and European League Against Rheumatism CLASS project (Classification Criteria of Anti-Synthetase Syndrome), an international alliance whose objective is to define criteria of antisynthetase syndrome.

Located in the heart of Hyde Park on the south side of Chicago, the University of Chicago Medicine and our Myositis Program are committed to building a more equitable health care system for our patients.

We are proud partners of The Myositis Association (TMA), aimed at improving patient’s access to reliable medical information about myositis and its subtypes, available therapeutic options, including rehabilitation, and support groups to both affected patients and their caregivers. Alongside TMA, we are devoted to delivering better care to women of color with myositis.

Information for Referring Physicians

New Patient Referral

If you would like to refer a patient to our Myositis Program/Rheumatology Clinic, please fax records to (773) 834-7065 and contact our scheduling team at (773) 702-6119. A list of the records needed is detailed below.

Urgent Consult

If you would like to request an urgent consult with rheumatology or other specialties within our Myositis Program, please call (773) 702-6119 and leave your direct number. One of our team members will call you back as soon as possible.

Information for Patients

If you would like to be seen as a new patient at the Myositis Program/Rheumatology Clinic, please contact our scheduling team at (773) 702-6119 to schedule your visit. If you would also like to be seen by specialties other than rheumatology, please let our scheduling team know at the time of your call. Please ask your doctor to fax all your medical records to (773) 834-7065. A list of required records is detailed below. Feel free to fax your own records to the same number as well.

List of Records Needed

Medical notes, including hospital admission, progress and discharge notes
List of medications
Imaging studies reports and physical discs
Full reports on pulmonary breathing tests
Reports on tissue biopsies such as skin, muscle and lungs, as well as physical tissue slides of paraffin-embedded tissue blocks
Contact information for the patient’s local medical specialists