Myositis

An early diagnosis is essential for an optimal prognosis, and a fast-track system has been implemented, including online consultations with patients and rheumatology colleagues nationally and internationally. We offer high-quality medical care, collecting and disseminating knowledge about diagnosis and management in collaboration with patient representatives.   

The pharmacological treatment of dermatomyositis and polymyositis is based on high doses of glucocorticoids,  often in combination with another immune-modulating agent.

All patients with myositis are referred to physical therapy for evaluation of muscle function and other aspects of physical capacity as well as assessment of pain and fatigue. All patients are introduced to specific exercises adapted to their capacity, pain, and fatigue levels and followed longitudinally. The exercise is increased slowly over time with the goal for patients to achieve health-enhancing physical activity levels as well as individualized exercise programs for optimal health. 

Most patients are also referred to occupational therapy for assessment of hand function, activity limitation, and the need for assistive devices and pacing, as well as individualized hand exercise programs for optimal function. 

Many patients need help and support conversations from a social worker to navigate the social support system.  

The myositis expert team is part of the European Reference Network (ERN) ReCONNET, which allows us to offer advice with support from experts from other European healthcare providers. It also allows us to share knowledge and experience, which increases the overall care for European myositis patients.

The myositis clinic at Karolinska University Hospital was established in 1993 by Professor Ingrid Lundberg. The multi-professional myositis team was established when physical therapist Helene Alexanderson joined the clinic in 1995. 

Since then, the myositis team has grown and now consists of seven rheumatologists, a nurse, a physical therapist, an occupational therapist, and a social worker. The team meets on a weekly basis. The team is also closely connected to the multi-professional and translational myositis research group at the Karolinska Institutet.

We have multidisciplinary conferences with pulmonologists, neurologists, dermatologists, and muscle pathologists. We collaborate closely with an experienced radiologist for the diagnosis of interstitial lung disease and a dedicated pathologist for the diagnosis of myositis. The myositis clinic at Karolinska is now a leading center in the world for establishing studies for patients with myositis in different stages of the disease.