Rare Diseases An Overview of Inclusion Body Myositis An acquired progressive muscular disorder and inflammatory myopathy By Abby Norman linkedin Abby Norman is a freelance science writer and medical editor. She is also the author of "Ask Me About My Uterus: A Quest to Make Doctors Believe in Women's Pain (2018)." Learn about our editorial process Abby Norman Medically reviewed by Medically reviewed by Rochelle Collins, DO on February 03, 2020 linkedin Rochelle Collins, DO, is board-certified in family medicine. She is an assistant clinical professor of family medicine at Quinnipiac University and works in private practice in Hartford, Connecticut. Learn about our Medical Review Board Rochelle Collins, DO on February 03, 2020 Print Table of Contents View All Table of Contents Symptoms Causes Diagnosis Treatment Inclusion Body Myositis (IBM) is an acquired progressive muscular disorder and one of several types of inflammatory myopathies. It causes inflammation that damages muscles, especially in the limbs. IBM develops over time and is most commonly diagnosed in men over the age of 50. In patients with IBM, inflammatory cells infiltrate the muscles of the body, especially in the hands, arms, legs, and feet. Once they accumulate, protein "bodies" discarded by the cells build up and cause the muscle to degrade, leading to progressive symptoms of weakness and wasting (atrophy). The presence of these damaging "inclusion bodies" in the muscles gives the condition its name. Dean Mitchell / Getty Images Symptoms The symptoms of IBM usually take time to develop, rather than coming on suddenly. It may be that patients who later find out they have IBM look back at the preceding months, or even years, and realize that some symptoms they had been experiencing were related to the condition. Initially, people with IBM may notice they are having trouble gripping or holding objects. If the muscles of the legs are affected, patients may stumble, trip, or even fall. Sometimes people with IBM only experience symptoms related to weakness on one side of the body. In about half of patients, the muscles of the esophagus are involved, which can make it difficult to swallow (dysphagia). Other common symptoms of IBM include: Trouble walking Difficulty climbing stairs Difficulty getting up from a chair Weakness in the fingers, hands, arms, legs, and feet Weakness in the muscles of the face, particularly the eyelids Difficulty with tasks like fastening a button or gripping objects Some patients experience pain as muscle damage increases "Foot drop" sensation which can lead to stumbles, trips, and falls Changes to handwriting or having a hard time using a pen or pencil A change in the appearance of the quadricep muscles of the thigh (wasting) While the muscles of the heart and the lungs are affected in other types of myopathy, they are not affected in patients with IBM. The symptoms of IBM develop slowly—usually over the course of several months or even years. It is believed that the older a patient is when they begin experiencing symptoms, the more aggressively the condition will progress. Many people who have IBM will eventually need some help with day-to-day living, most often within 15 years of receiving a diagnosis. This could include mobility aids such as canes, walkers, or wheelchairs. While IBM can lead to disability, it does not appear to shorten a person's lifespan. Causes The cause of IBM is not known. Researchers believe that, as with many conditions, a combination of factors related to a person's lifestyle, environment, and immune system play a role. Some research has suggested that exposure to certain viruses may trigger the immune system to begin attacking normal, healthy, muscle tissue. In other studies, taking certain medications have been thought to contribute to a person's lifetime risk of developing IBM. Researchers don't think IBM is an inherited condition, but genetics are likely involved together with other factors. Some people may have genes that, while they don't cause IBM, could make them more likely to develop the condition in their lifetime (genetic predisposition). What You Should Know About Congenital Myopathies Diagnosis IBM is considered a disease of adult onset. Children do not get IBM and the condition is rarely diagnosed in people younger than 50. The disease is more commonly diagnosed in men, though it also affects women. A doctor will make a diagnosis of IBM after a thorough physical examination and careful consideration of a patient's symptoms and medical history. Sometimes they will order tests that assess how well the nerves of the muscles are functioning (electromyography or nerve conduction study). They may also take samples of the muscle tissue for examination under a microscope (biopsy). A lab test that measures the levels of creatine kinase (CK) in the blood may also be used. CK is an enzyme released from muscles that have been damaged. While CK levels can be elevated in patients with myopathies, patients with IBM often have only mildly elevated or even normal levels of CK. Since IBM is a condition where the body attacks its own tissues, a doctor may also order tests to look for antibodies commonly found in patients with autoimmune disease. Though because treatments typically used for autoimmune conditions don't consistently work for all patients with IBM, researchers are still not sure if IBM is truly an inflammatory disease. What Are Autoimmune Diseases? Treatment There is currently no cure for inclusion body myositis. Even with treatment, the disease will get worse over time—though the progression is usually slow. People who have been diagnosed with IBM often benefit from working with physical or occupational therapists to help strengthen their muscles. Developing strategies to avoid falls, including the use of mobility aids, is also important to help patients stay safe. There is no standard treatment that works to manage symptoms in every patient, so each patient with IBM will need to work with their doctor to decide which, if any, treatments they would like to try. Medications that suppress the immune system (such as steroids like prednisone) are sometimes used, but don't work for all patients and tend to have side effects. A Word From Verywell Inclusion body myositis is a progressive muscular disorder and one of several types of inflammatory myopathies. It is generally diagnosed in men over the age of 50, but women can also be affected. It causes damage to the muscles that leads to weakness which develops slowly, usually over the course of months to years. Researchers aren't sure what causes IBM, but it's believed that environment and genetics likely play a role. While there's currently no cure for IBM and it can lead to disability, the condition is not life-threatening and doesn't appear to shorten a person's lifespan. Was this page helpful? Thanks for your feedback! Sign up for our Health Tip of the Day newsletter, and receive daily tips that will help you live your healthiest life. Sign Up You're in! Thank you, {{form.email}}, for signing up. There was an error. Please try again. What are your concerns? Other Inaccurate Hard to Understand Submit Article Sources Verywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read our editorial process to learn more about how we fact-check and keep our content accurate, reliable, and trustworthy. Inclusion Body Myositis. National Center for Advancing Translational Sciences Genetic and Rare Disease Information Center. Sporadic Inclusion Body Myositis. National Organization for Rare Disorders. Inclusion-Body Myositis. Muscular Dystrophy Association. Sporadic Inclusion Body Myositis. The Myositis Association. Inclusion Body Myositis Information Page. National Institute of Neurological Disorders and Stroke.