Inclusion-Body Myositis: IBM


BALTIMORE, Md. (Ivanhoe Newswire) — It’s a condition that causes the body’s immune system to turn against its own muscles, making it difficult to walk or lift heavy things. Inclusion-body myositis is often misdiagnosed or dismissed as a normal part of aging.

From the time he was a teen, Kevin Dooley, MD, was drawn to the mountains.

“It’s been the focus of almost all of my vacations during my life.” Dr. Dooley told Ivanhoe.

But recently, steep climbs became difficult. At first, Dr. Dooley thought it was normal aging until his hands lost strength.

Dr. Dooley explained, “When I go to pump gas sometimes I would have to use two hands on the lever to squeeze hard enough.”

When his doctor couldn’t tell him what was wrong, this Harvard-educated ophthalmologist did his own research online. He didn’t like what he found. A specialist confirmed he had inclusion-body myositis, also called IBM.

“No, I’d never heard of it. Even though I’m a doctor it was totally unknown to me,” Dr. Dooley stated.

Thomas Lloyd, MD, PhD, is co-director of the Johns Hopkins Myositis Center at Johns Hopkins University School of Medicine, Department of Neurology and Neuroscience. With IBM, muscles in the thighs and forearms degenerate. About half of all patients have severe difficulty swallowing.

“They either will not be able to eat and take in adequate nutrition, or oftentimes, even aspirate,” Dr. Lloyd explained. (Read Full Interview)

Doctors don’t know what causes IBM. There’s no cure. But Dr. Lloyd says researchers are testing promising therapies that target the muscles.

“On the one hand, stimulating regeneration, and on the other hand,  drugs designed to actually slow muscle breakdown,” explained Dr. Lloyd.

Dr. Dooley says he’s thankful this condition progresses very slowly. For now, he’s still able to enjoy the outdoors, and hike on even ground.

“It’s great cause I can still do something I love,” said Dr. Dooley.

Dr. Lloyd says IBM is sometimes misdiagnosed as the neurodegenerative disease ALS, also known as “Lou Gehrig’s Disease.” But in ALS, the disease attacks the brain and spinal cord, while IBM attacks the muscle.

Contributors to this news report include: Cyndy McGrath, Supervising and Field Producer; Gabriella Battistiol, Assistant Producer; Roque Correa, Editor and Videographer.

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REPORT:       MB #4281

BACKGROUND: Inclusion-Body Myositis is one of the inflammatory myopathies, which are a group of muscle diseases. A myopathy is a muscle disease, and inflammation is response to cell damage. The cause of IBM is unknown, but the body’s immune system attacks its own muscles and damages muscle tissue in an autoimmune progression. The disease strikes mostly men, but women can also be affected. The onset typically occurs after the age of 50. The symptoms that occur are weaknesses of the wrists and fingers, muscles in front of the thigh, and muscles that lift the front of the foot.


TREATMENT: There has been no actual treatment for IBM. Early reports recognized the failure of patients to respond to steroids, methotrexate, azathioprine, and cyclophosphamide.  Muscle biopsy is performed to diagnose the condition. Severe dysphagia, which is a symptom of having trouble swallowing, can require placement of a gastrostomy tube. Depending on the severity of weakness, physical therapy comes to play. For severe dysphagia, the treatment may have to include botulinum toxin injections (Botox), and cricopharyngeal myotomy (surgical sectioning of the upper esophageal sphincter). There is a debate on whether physical exercise can aggregate inflammation and increase muscle breakdown.  Studies have shown that exercises can be instituted safely.


RESEARCH:  Researchers supported by MDA are studying the causes of inflammatory myopathies. 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. Other MDA researchers are studying inflammatory myopathies in dogs, with the goal of 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.



Thomas E Lloyd

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