MIHRA Community Stories… Exercise

Exercise is Medicine for everyone with myositis!

Dr. Helene Alexanderson tells the ‘Frog Prince’ story of transforming myth intolife-supporting SCIENCE in myositis diseases.

When I began my journey in  rheumatology as a physical therapist in 1993, textbooks  insisted on rest and reduced physical activity for people with myositis to avoid irritating and injuring muscles further until the disease activity was controlled. This was not based on studies on patients with myositis, but rather studies in sports medicine that demonstrated that intensive exercise increased muscle enzymes (CK) and inflammation in muscle tissue. We now know this is a normal response to exercise that normalizes after a couple of days. In fact, this process induces muscle to regenerate, become stronger and ultimately reduces inflammation.

The last three decades of intensive exercise from our group at the Karolinska University Hospital and other countries such as US, Austria, Brazil, Denmark, and Czech Republic have advanced our understanding of exercise in myositis in an extraordinary way.

The first study of exercise in myositis was published in 1993, as a case report of a patient with ‘polymyositis’ who performed isometric strength training without elevated CK-levels and with improved muscle strength. Thereafter a series of small studies evaluated moderate-intensity aerobic exercise and home exercise in people with low disease activity and stable medication that demonstrated similar findings along with improved aerobic capacity, muscle function and quality of life.

These hopeful findings excited our group in Stockholm, and we conducted more and more extensive studies that increased the intensity and type of exercise over the decades and apply exercise to people with different stages of myositis. Even intensive programs were not only safe, but actively reduced disease activity and inflammation and repaired muscle compared to non-exercising control groups. Recent years revealed some types of resistance training can help preserve muscle function in people with inclusion body myositis (IBM).

A super important finding is that even a brief 12-week aerobic exercise and resistance training can reduce insulin resistance and cardiovascular disease risk in people with myositis and that 12 to 24 weeks of exercise can reduce depression compared to non-exercise.

Finally, our group is excited to share our new data!

We found that a 12-week high-intensity interval training on a stationary bike with 30-second intervals exceeding 85% of maximal heart rate is safe and more effective in improving aerobic capacity and muscle health than moderate exercise in people with recently diagnosed myositis.

To conclude, collective evidence as of today strongly supports that everyone with myositis should exercise to optimize their muscle and overall health. Future research is needed with more long-term studies more focus on the effects of exercise on pain, fatigue and psychological well-being – but we are getting there –hopping one lily pad at a time!

Helene Alexanderson, June 2024

Helene is the vice-secretary of MIHRA and an associate professor and physical therapist at Karolinska University Hospital and Karolinska Institutet, She focuses her research on exercise effects, clinical outcome measures and understanding the experience of living with myositis. Helene is also a member of the MIHRA website committee – and she hopes you love the MIHRA website!