Most people with myositis respond to corticosteroid (‘steroid’) drugs such as prednisolone. Although often effective and necessary at the start of treatment, these drugs can have side-effects, especially if they are taken in large doses for extended periods (several months or even years). For this reason, specialists may also prescribe other immunosuppressive drugs to help control the muscle inflammation and reduce and eventually stop the steroids.
Your specialist may suggest other treatments if the condition is proving hard to treat. For example, high-dose intravenous immunoglobulin (a naturally occurring human blood protein) may be helpful in acute or severe cases.
Steroids can lead to an increased risk of thin bones (osteopenia or osteoporosis). Your GP or specialist will need to assess your bone health before starting you on steroids. They may do this by checking the vitamin D levels in your blood and/or by arranging a bone scan.
For most people, the symptoms improve with treatment, but the responses to treatment vary. Those who have developed weakness over a long period may not respond so well to treatment.
Does exercise help?
When you’re having treatment, active exercise is important in improving muscle strength and mobility. Keeping active will lessen the risk of muscles weakening and wasting, and of other complications such as osteoporosis or leg vein thrombosis.
Your specialist will probably suggest physiotherapy, as it will help you maintain the full range of muscle and joint movement. Many people with significant limb weakness also find activities such as swimming helpful in maintaining muscle function. Exercise will also help avoid weight gain.
Individuals with more severe forms of myositis and restricted mobility will benefit from assessment and help from an occupational therapist (OT) at the hospital or your Local Authority. They may recommend special aids and home adaptations. Some people might find using a wheelchair helpful, particularly for longer trips outdoors.
Active research, particularly in the field of immunology, will tell us more about why individuals develop myositis, and explain how muscle damage and weakness occur. Improving drug treatment is equally important, particularly in identifying which treatments are most effective and free from significant risks and side-effects. There is a need for scientifically sound, controlled trials of the various drug treatments already available, as well as new or experimental treatments.
Download your alert card
Alert cards are conveniently shaped to fit inside a wallet and outline key recommendations and precautions that a non-specialist clinician would need to know during a time of worsening health.