IBM Education & Treatment
Inclusion body myositis (IBM) is an inflammatory muscle disease characterized by progressive muscle weakness that affects both proximal (closest to the center of the body) and distal (farthest from the center of the body) muscles. It is a very slow progressive disease that typically is seen more in men after 50 years of age.
Most commonly, the disease begins in the quadriceps muscles. This will cause difficulty getting up out of a chair or climbing stairs. It can also affect muscle of the hand early on, and this will lead to difficulty gripping things or opening jars. As IBM progresses, it will cause weakness in all muscle groups. Late in the course of the disease, one possible symptom is difficulty swallowing. IBM generally does not cause pain; however, with weakness and immobility there can often be secondary pain.
There are multiple causes for muscle weakness and therefore the diagnosis of inclusion body myositis is often delayed by some period of time. Patients with IBM will usually be suspected when they have slowly progressive muscle weakness associated with elevated levels of muscles enzymes seen on blood tests. These tests can be either an elevated creatinine phosphokinase (CPK) or an elevated aldolase. In addition, EMG/ Nerve Conduction Studies will reveal evidence for a muscle disease. The specific diagnosis, however, cannot be made without a muscle biopsy ordered by a neurologist. This is very important because IBM can look like polymyositis or even adult onset muscular dystrophies. Therefore all patients should have a muscle biopsy. Unfortunately, at present, there is no known cause for this disease.
There is no known effective therapy for inclusion body myositis. The primary issue in terms of caring for patients with IBM is to try to manage their weakness. This may mean getting some assistive devices to help with doing things with their hands or providing walkers or scooters if walking becomes difficult.
As there is no known cause for Inclusion Body Myositis, there is at present no effective cures or treatments for this disease. There is extensive research done by neurologists into IBM and it is hopeful that within a few years we will have some therapy for this disease.
Related publications by our physicians:
- Interim Analysis of A Pilot Trial of Natalizumab in Inclusion Body Myositis (458k PDF)
- Pilot trial of etanercept in the treatment of inclusion-body myositis.