MDA leads the search for treatments and therapies for inclusion-body myositis (IBM). The Association also provides comprehensive supports and expert clinical care for those living with IBM.
In this section, you’ll find up-to-date information about inclusion-body myositis, as well as many helpful resources. This information has been compiled with input from researchers, physicians and people affected by the disease.
As you learn more about IBM, always remember that you’re not alone. MDA is here for you and your family, standing ready to provide help and hope. There is a place for you in the MDA IBM community.
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|The first muscles affected in inclusion-body myositis are usually those of the wrists and fingers, and the muscles at the front of the thigh. The muscles that lift the front of the foot also may be affected.|
IBM is one of the inflammatory myopathies, a group of muscle diseases that involves inflammation of the muscles or associated tissues, such as the blood vessels that supply the muscles. A myopathy is a muscle disease, and inflammation is response to cell damage.
Another word for inflammatory myopathy is myositis. The myo root means muscle, and the itis root means inflammation; so a myositis is an inflammatory muscle disease.
Inflammatory cells invading muscle tissues is one characteristic of IBM, but the disease is distinct from other inflammatory myopathies in that muscle degeneration also occurs. IBM is named for the clumps of discarded cellular material — the "bodies" — that collect in the muscle tissues.
There are some genetic forms of IBM in which, for the most part, inflammation isn’t a major part of the picture. For this reason, these forms are often called inclusion-body myopathy (muscle disorder), leaving out the “itis” in the disease name to reflect the relative lack of inflammation. For more, see Causes/Inheritance .
IBM causes progressive weakness of the muscles of the wrists and fingers, the muscles of the front of the thigh, and the muscles that lift the front of the foot. Unlike in other inflammatory myopathies, the heart and lungs are not affected in IBM. For more, see Signs and Symptoms .
The cause of inflammatory myopathies like IBM is unclear. For some reason, the body’s immune system turns against its own muscles and damages muscle tissue in an autoimmune process. The cause of the muscle degeneration that occurs in IBM is unclear as well.
Genetic forms of IBM can be either dominant or recessive. For more, see Causes/Inheritance .
IBM is primarily a disease of men, but women also can be affected. Its onset is typically after age 50 and progression is slow. Currently there are no medications to treat IBM, but the disease isn't considered life-threatening. Most people with IBM remain able to walk, although they may require a cane or wheelchair for long distances.
New research  is rapidly leading to increased understanding of IBM. Scientists are examining factors that may trigger the disease such as viruses, certain drugs or vaccines. All these factors are being studied so inflammatory myopathies like IBM can someday be better understood, treated or perhaps prevented entirely.
Inclusion-body myositis (IBM) primarily affects men, although women can be affected. It occurs mainly in those older than 50.
IBM usually begins with the gradual onset of slowly progressive weakness in the muscles of the wrists and fingers, and those at the front of the thigh (quadriceps). The muscles that lift the front of the foot also may be affected. The weakness may not be the same on both sides of the body.
Trouble with gripping, such as a shopping bag or briefcase, and frequent stumbles are common experiences. About a third of people with IBM have some weakness of the swallowing muscles.
IBM is generally a slowly progressive disease, and life expectancy isn’t significantly affected. Most people with IBM remain able to walk, although they may require a cane or wheelchair for long distances. Some are more profoundly affected, and require a wheelchair full time within 10 or 15 years of the first symptoms.
As with other muscle diseases, a doctor diagnoses inclusion-body myositis (IBM) by considering the individual’s personal history, family medical history and the results of a careful physical examination. This may be followed by some lab tests, perhaps of the electrical activity inside the muscles. Usually, a muscle biopsy is ordered.
After a careful history and physical exam to document the pattern of weakness in the patient’s muscles, a doctor who suspects myositis likely will order a blood test to check the level of creatine kinase (CK), an enzyme that leaks out of muscle fibers when the fibers are being damaged. Although CK levels are usually very high in other inflammatory myopathies, in IBM it may be only mildly elevated, or even normal.
In some cases, the doctor may ask for a blood test for specific antibodies, proteins produced by the immune system in myositis and other autoimmune diseases. Some of these antibodies appear to be specific to autoimmune muscle disease.
The next step is sometimes an electromyogram, a test in which tiny needles are inserted into the muscles to test their electrical activity both at rest and when the person tries to contract the muscle.
Inflammatory myopathies show a distinctive pattern of electrical activity that can help differentiate them from other types of muscle disease.
A nerve conduction velocity test is sometimes performed. This test measures how fast a nerve impulse travels and how strong it is.
Sometimes these tests are used to rule out disorders that may mimic the symptoms of IBM.
A person with a suspected inflammatory myopathy is often asked to undergo a muscle biopsy , a procedure in which a small piece of muscle is removed for examination. This biopsy can enable the physician to pinpoint the diagnosis to a type of myositis.
The biopsy sample from a person with IBM is unique because of its inclusion bodies, for which the disease is named.
These “bodies” (which don’t appear in normal cells) contain clumps of discarded cellular material. Inflammatory cells can be seen invading muscle tissue, although some researchers believe this invasion is secondary to the primary events in the muscle tissue, presumably those that cause the inclusion bodies to appear.
In most cases, the cause of IBM is unclear. For some reason, the body’s immune system turns against its own muscles and damages muscle tissue in an autoimmune process.
Viruses might be a trigger for autoimmune myositis. People with the HIV virus, which causes AIDS, can develop a myositis, as can people with a virus called HTLV-1. Some myositis cases have followed infection with the Coxsackie B virus.
There are reports of myositis following exposure to certain drugs. Among the drugs that have been suspected of contributing to myositis are carticaine (a local anesthetic), penicillamine (a drug used to lower copper levels in the body), interferon-alpha (mostly used to treat cancer and hepatitis), cimetidine (used to treat ulcers), carbimazole (to treat thyroid disease), phenytoin (used to treat seizures) and growth hormone. The vaccine for hepatitis B also has been implicated in some cases.
Genetic inclusion-body myopathies can be inherited in either a dominant or a recessive pattern. Dominant genetic disorders require only one genetic flaw to show themselves. Recessive disorders require that both parents pass on a flaw in the same gene before their offspring can show signs of the disease. For more, see Facts about Genetics and Neuromuscular Disease . And, to learn more about getting a definitive genetic diagnosis, see The Genie's Out of the Bottle: Genetic testing in the 21st century .
Treatment with drugs that suppress the immune system has been tried in inclusion-body myositis (IBM) but in general hasn’t been effective. Some physicians may try corticosteroids or other medications that alter the immune response if the patient wishes this treatment, but many feel that side effects outweigh any subtle benefits that might occur with these drugs in IBM.
IBM is generally a slowly progressive disease, and life expectancy isn’t significantly affected. Most people with IBM remain able to walk, although they may require a cane or wheelchair for long distances. Some are more profoundly affected, becoming gradually more disabled and needing wheelchairs full time within 10 or 15 years of the first symptoms.
The heart and lung involvement seen in other inflammatory myopathies isn't part of the picture. And unlike dermatomyositis  and polymyositis , IBM is not associated with an elevated cancer risk.
Researchers supported by MDA are studying the underlying mechanisms that cause inflammatory myopathies, the group of diseases to which inclusion-body myositis (IBM) belongs.
One research team studying the mechanisms of muscle destruction in IBM-affected muscle fibers is building on recent observations that two proteins are abnormally elevated in these fibers. One is called myostatin, which limits muscle growth; and the other is called NF kappa B, which is known to play a role in inflammation.
Another MDA-supported group of investigators has been looking at using antibodies (proteins made by the immune system) to target abnormal clumps of cellular material in IBM-affected muscle.
Other MDA researchers are studying inflammatory myopathies in dogs, with an eye to developing new tools for the diagnosis and treatment of these diseases in humans.
Gene therapy (the insertion of a therapeutic gene) is being investigated for one of the hereditary IBM forms.
In addition, there are several ongoing and completed clinical trials of medications to treat IBM .
A clinical trial is a test in humans of an experimental medication or therapy. Clinical trials are experiments, not treatments, and participation requires careful consideration.
Although it's possible to benefit from participating in a clinical trial, it's also possible that no benefit — or even harm — may occur. Keep your MDA clinic  doctor informed about any clinical trial participation. (Note that MDA has no ability to influence who is chosen to participate in a clinical trial.)
For more about clinical trials in general, see Learn About Clinical Studies , and to learn more about trial participation in neuromuscular disease, read the Quest magazine article Being a Co-Adventurer .
For a more refined list of IBM clinical trials, visit ClinicalTrials.gov , a registry of federally and privately supported clinical trials in the United States and around the world. Select "Search for Clinical Trials," and follow the instructions to narrow down your search results.