Suggest Treatment For Inclusion Body Myositis
Inflammatory and degenerative disease
I am sorry for the problem that you have. Was a muscle biopsy done? Was it diagnosed to have inclusion bodies on biopsy?
You might have already read about it. It is basically both a inflammatory and degenerative disease affecting all limbs including proximal and distal muscles. So basically a constellation of symptoms of diffuse, progressive, asymmetric, proximal, and distal weakness that is generally not responding to steroids, azathioprine and other immunosuppresant treatment.
The outcomes are disappointing. Individual responses, functional improvement and local strengthening are observed in very few.
Beta interferon therapy is being tried there. Some other newer treatment modalities are tried but with no definite success.
Empiric therapies include Co Q10, carnitine, and antioxidants. They may provide benefit to some patients.
Your doctor will certainly know these.
Let me know if you have specific questions.