IE 11 is not supported. For an optimal experience visit our site on another browser.

What is inclusion body myositis? Peter Frampton reveals diagnosis, farewell tour

The famed guitarist and singer was diagnosed after a series of troubling falls.
Peter Frampton diagnosed with a muscle wasting disease
ANAHEIM, CALIFORNIA - JANUARY 26: Peter Frampton performs onstage at the TEC Awards during the 2019 NAMM Show at the Hilton Anaheim on January 26, 2019 in Anaheim, California.Getty Images
/ Source: TODAY

Famed musician Peter Frampton is announcing his farewell tour as he battles an inflammatory disease that’s causing his muscles to weaken and waste and threatens his ability to play guitar.

Frampton, 68, was diagnosed with inclusion body myositis (IBM) almost four years ago, but is just now going public as the disease progresses.

“Look, it's not life-threatening. It's life-changing,” Frampton said in an interview with CBS This Morning.

"What will happen, unfortunately, is that it affects the finger flexors… so for a guitar player, it's not very good."

Frampton was diagnosed after a series of troubling falls — a typical symptom — including tripping over a guitar cord on stage, falling over while kicking a ball and tumbling while on vacation with his daughter. He also noticed that when he boarded planes, he couldn’t put heavy objects into the overhead compartments because his arms were becoming weak, he told Rolling Stone. A visit with a neurologist finally confirmed the diagnosis.

Frampton now finds going upstairs and downstairs to be “the hardest thing,” to the point where he’ll have to get a cane. But his guitar playing is still excellent, though he doesn’t know how it will be a year from now, he said. It's why he's now frenziedly recording music and planning a farewell tour this summer.

There is no cure for IBM, but the musician is taking part in a new drug trial and finds comfort in working out.

“Right now, the only thing that works for me is exercise. I work out like a maniac all the time. It’s strengthening the muscle that I have. It seems to be the best possible thing for IBM is to work out every day,” he told the magazine.

What is inclusion body myositis?

IBM is a progressive muscle disorder that usually develops after age 50, according to the Genetic and Rare Diseases Information Center at the National Institutes of Health.

There are 3.5 cases of IBM per 100,000 people in this age group and it strikes men up to three times more often than women, studies have found.

Patients experience painless but progressive weakening of muscles in the legs, arms, fingers and wrists. Facial muscles can also be involved, and some people have trouble swallowing, though Frampton said his swallowing ability — and therefore his voice — is not affected.

The exact cause is unknown, with genetic, immune-related, and environmental factors all thought to play a role. Because it’s an inflammatory disease, some doctors believe IBM is an autoimmune disorder, the Cleveland Clinic reported. Others think an infection by an unknown virus could be to blame.

Most people need assistance with basic daily activities within 15 years, and some will need a wheelchair, according to the National Institutes of Health. But IBM doesn’t affect life expectancy.

What are the symptoms?

The Johns Hopkins Myositis Center and the Cleveland Clinic list the following warning signs:

  • Falling, tripping or weakness in the hands can be some of the earliest symptoms
  • Difficulty gripping, pinching, and buttoning
  • Difficulty swallowing
  • Muscle weakness that slowly progresses over months or years

How is IBM diagnosed?

Doctors perform a physical and consider a patient’s medical history. A muscle biopsy can reveal the presence of inclusion bodies, or clumps of discarded cellular material, for which the disease is named, according to the Muscular Dystrophy Association. Blood tests and other muscle tests also play a role in the diagnosis.

What is the treatment?

There is no cure for IBM, but the disease can be managed by exercise, fall prevention, physical therapy, occupational therapy and speech therapy. A small number of patients may benefit from drugs that suppress the immune system.

"Obviously it's not the best thing to wake up to every morning, but I'm a very positive person. I always have been. I'm a resilient person too," Frampton told Rolling Stone. "You can't really knock me down too far before I brush myself off, pick myself up and move on."