Dermatomyositis (DM), a form of myositis, is a chronic, rare, life-threatening, inflammatory, systemic autoimmune disease affecting approximately 80,000 people in the U.S., EU and Japan.1
The signs and symptoms of DM reflect multi-organ involvement, which includes distinctive skin rashes usually accompanied by proximal muscle weakness, and can also include pulmonary, cardiac, gastrointestinal, and joint involvement. The symptoms of DM vary depending on the severity of the disease. DM rash, which can be painful and intensely itchy, looks patchy and reddish or purple. Some people also have deposits of calcium in the skin and in the muscles called calcinosis. People affected by DM may experience weight loss, trouble swallowing, muscle pain, fatigue, inflamed lungs, and be sensitive to light. Long-standing muscle atrophy and weakness are also common and may require the use of mobility aids. Additionally, other organs, including the lungs and the heart, can also be affected.2
Patients with DM can have recurrent disease flares or chronic progressive disease activity, with increased mortality.3,4 The current mainstay of treatments include FDA-approved systemic glucocorticoids, adrenocorticotropic hormone analogue and off-label use of glucocorticoid-sparing immunosuppressive agents.5,6 There is significant unmet need for new treatments to achieve disease control in DM because of limited efficacy or toxicity of immunosuppressive agents or refractory disease.7,8
Individuals living with dermatomyositis and care partners talk about the disease, symptoms, and how it affects their daily lives.
1. Health Advances, LLC Analysis
2. “Dermatomyositis Information Page.” National Institute of Neurological Disorders and Stroke, U.S. Department of Health and Human Services, 15 June 2020, www.ninds.nih.gov/Disorders/All-Disorders/Dermatomyositis-Information-Page
3. Marie, Isabelle. “Morbidity and Mortality in Adult Polymyositis and Dermatomyositis.” Current Rheumatology Reports, vol. 14, no. 3, 2012, pp. 275–285., doi:10.1007/s11926-012-0249-3
4. Schiopu, Elena, et al. “Predictors of Survival in a Cohort of Patients with Polymyositis and Dermatomyositis: Effect of Corticosteroids, Methotrexate and Azathioprine.” Arthritis Research & Therapy, vol. 14, no. 1, 2012, doi:10.1186/ar3704
5. FDA label Orapred ODT, available at https://www.accessdata.fda.gov/drugsatfda_docs/label/2010/021959s004lbl.pdf; accessed 15 June 2020
6. FDA label H.P. Acthar gel, available at https://www.accessdata.fda.gov/drugsatfda_docs/label/2018/008372s057lbl.pdf; accessed 15 June 2020
7. Dalakas, Marinos C. “Immunotherapy of Myositis: Issues, Concerns and Future Prospects.” Nature Reviews Rheumatology, vol. 6, no. 3, Mar. 2010, pp. 129–137., doi:10.1038/nrrheum.2010.2
8. DeWane ME, et al. Dermatomyositis: Clinical features and pathogenesis. J Am Acad Dermatol.