Training as disease-modifying treatment in myositis
Professor Ingrid Lundberg is chief physician at the Rheumatology Clinic at Karolinska University Hospital and a researcher at the Center for Molecular Medicine at Karolinska Institutet. Her research focuses on rheumatic muscle inflammation, myositis. It was one of Ingrid’s patients who inspired her in the 1980s to question the standard ordination for myositis, which at that time was to rest. The patient refused to follow Ingrid’s recommendations and was able to show improvement through training. Ingrid, being an open-minded person, listened to the patient and this opened up a field of research that has led to re-writing of the myositis textbooks.
Myositis is a chronic muscle disease characterized by muscle weakness and decreased endurance. Histological signs include inflammatory cells and the patient’s lungs and joints are often affected. The treatment is based on cortisone, initially given in high doses and preferably in combination with another immunosuppressive drug, but the patients rarely regain full function and mobility. Ingrid Lundberg has now, together with the researchers in her group, established physical activity as an additional recommended treatment for these patients. “We started carefully by establishing tolerance for exercise in myositis patients, and continued to evaluate both endurance and strength in different studies” Ingrid explains. To date her group has published 23 scientific papers based on different exercise studies. “Our research has been widely spread internationally and we have written review articles and book chapters in which exercise is established as treatment in myositis,” Ingrid continues.
Being a pioneer, Ingrid wanted to assess what happens inside the muscle of the patients and used a method called microdialysis in one of her studies. Microdialysis is the process in which a small, liquid- filled probe is introduced into the muscle and the molecules in the muscle pass over to the probe, which can be removed for analysis. The myositis patients had a probe inserted in their thigh muscles to assess what happened during an exercise session on a stationary bike. On the same occasion, the physician took a muscle biopsy from the thigh. The study then divided one group of patients into 12-weeks of coached training and was compared with a group of patients who did not train. At the time of follow-up the group who trained had increased endurance, through the microdialysis analysis there was less lactate formation apparent in the muscle, and the biopsies revealed less inflammation and more muscle protein and capillaries. “The most surprising thing during all these years of our exercise research has been that we could see molecular changes of inflammation in the muscle tissue. Now we have to find out what kind of exercise gives the best effect” Ingrid says.
The American College of Rheumatology (ACR), the largest conference in the field with over 14,000 participants, took place in late autumn last year. During the meeting a whole session was dedicated to exercise and myositis. One of the invited speakers was Helene Alexanderson, physiotherapist and Associate Professor and also the person who runs the exercise studies at Karolinska University Hospital. “It was 19 years ago since I attended ACR with my first poster about exercise in myositis. Back then the other researchers in the field thought I was crazy. ‘You are going to make them worse’ they told me.” The memory makes Helene smile and she continues: “Today we have shown that training has an anti-inflammatory effect in myositis, both systemically and locally in the muscle.” Training is not just a disease coping factor that makes you feel better, it is actually a proven therapy that should be individually adjusted, just like cortisone. The advantage with exercise is that with the right dosage, as a therapy it has no adverse side-effects. On the contrary, training counteracts the side-effects of cortisone treatment, which is known to induce type 2 diabetes and osteoporosis.
The training scheme needs to be individually accustomed so that every patient is sufficiently challenged in order to receive benefit. The medical treatment needs to be taken into consideration and the patient cannot train too intensively as that increases the risk for setback. “We are still not able to say whether the disease influences the muscle strength or the muscle endurance but for the time being we combine both forms in order to get the best effect for the patients” Ingrid says. To be able to do this physiotherapists with expertise within rheumatic diseases are needed. Helene is a bit concerned for the future as rehabilitation for myositis patients is planned to be transferred to primary care. “It will take rheumatological know-how to treat myositis patients with exercise. A physiotherapist in primary care might encounter one myositis patient per year. These are not optimal circumstances to personalize the dosage of exercise,” Helene says.
Even newly diagnosed patients start to train early on according to a scientifically evaluated home exercise program, and just like in the general population the habit of exercise and motivation differs between patients. “When you have followed a patient during a long period of time and then one day, you can see that the lifestyle change finally becomes apparent. Those days are the best” Helene says, and continues with anecdotes about emails and meetings whereby appreciative patients have related the improvements exercise has had on their daily lives.
This spring the research group will initiate a new exercise study to investigate what the effects would be if newly diagnosed myositis patients start to do High Intensity Interval Training (HIIT) early on. “The patients are initially prescribed high doses of immunosuppressants and we need to know if they already tolerate high intensive training after 3-4 weeks of treatment. We would like to know how far we can take the anti-inflammatory effects of exercise. Perhaps the drug therapy could be modified as a result” Helene says. What about their own habit of exercise? Ingrid practices what she preaches and is a very active person. She keeps her pulse up by swimming, jogging or riding her bike. Helene on the other hand is inspired by the HIIT training as it fits her preconditions and lifestyle and she does interval training as well as resistance training a couple of times per week. Training, the treatment without* side-effects.
*Unless, of course, you get injured.
Text: Ingela Loell