Prognosis for the different forms of myositis vary greatly and often depend on the presence of other conditions, such as interstitial lung disease or certain autoantibodies.
While sporadic inclusion body myositis is a progressive disease, life expectancy for those with sIBM is usually the same as for those without the disease. In fact, IBM patients usually don’t die from the disease, but from complications (often preventable) that are associated with it. Patients who develop impaired swallowing, for example, are at greater risk for aspiration (inhaling food and fluids into the lungs), which causes pneumonia and may lead to death. Similarly, injuries that occur as a result of falling, such as hip fractures and head injuries, also increase the likelihood of dying.
For dermatomyositis, polymyositis, and necrotizing myopathy, the progression of the disease is more complicated and harder to predict. More than 95 percent of those with DM, PM, and NM are still alive more than five years after diagnosis. Many experience only one period of acute illness in their lifetime; others struggle with symptoms for years.
One of the biggest problems in treating myositis is obtaining an accurate diagnosis. The average myositis patient often visits five doctors over three-and-a-half years before receiving an accurate diagnosis. Of those who die early in the disease course, the most frequent cause is not the myositis itself, but infection due to suppressed immunity as a result of treatment.
Your physician may be able to predict complications by knowing your autoantibody status. Complications contributing to mortality include myositis-associated cancer, dysphagia (trouble swallowing), interstitial lung disease, and heart problems.
In addition to following physician treatment recommendations, many myositis patients find that adopting healthy lifestyle habits has a positive impact on their disease. These habits include such things as eating healthy foods, exercising regularly, reducing stress, getting enough sleep, maintaining satisfying social relationships, engaging in activities you enjoy, and adopting a sense of gratitude and forgiveness. And if you smoke, you should quit.
There are lots of other things you can do to affect your disease course. Here are some things to be aware of:
- Know the signs of infection and see your doctor if you develop these symptoms.
- Find a doctor familiar with myositis.
- Exercise can reduce inflammation and help you maintain independence.
- Know your autoantibodies and discuss their implications with your doctor.
- Discuss appropriate cancer screenings with your doctor.
- Tell your doctor about any signs of lung problems (shortness of breath, cough, wheezing).
- Report the first signs of any problem swallowing.
- Be safety conscious to prevent falls.
- Consider eating according to an anti-inflammatory diet.
- Consider other self-care measures you can engage in.