Polymyositis & Dermatomyositis Support Group

Polymyositis (PM) is a type of chronic inflammation of the muscles (inflammatory myopathy) related to dermatomyositis and inclusion body myositis. The inflammation is predominantly of the endomysium in polymyositis, whereas dermatomyositis is characterized by primarily perimysial inflammation.

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/ Polymyositis & Dermatomyositis Support Group

Anyone with IBM?

freelee
freelee
Does anyone have IBM or know how it is diagnosed?
I was diagnosed recently as "inflammatory myositis" from a muscle biopsy which did not differentiate the type??? Is there a specific test? Is it by symptoms? The prednisone did not work and the doctor said i have the type that does not respond to prednisone. I was in shock and neglected to ask what kind I did have.
deleted_user
deleted_user
No, I do not have Inclusion-Body Myositis. If you are concerned about this, though, you should call your doctors office and ask them. Perhaps you could ask to have your records faxed over to you?
deleted_user
deleted_user
I think from what I have read that you are diagnosed with IBM after all the stuff they try for PM/DM does not work. Prednisone only worked briefly for me in that it lowered my aldolase levels for a month or so but did not help the muscle pain and weakness. I am now taking methotrexate and while I understand that it takes several weeks to really kick in, I just took the 3d dose and can't tell any difference in how I feel.
deleted_user
deleted_user
IBM is a puzzle to many specialists. Some of the signs that point to it and are generally not seen in PM/DM are: 1. weakness is often asymmetrical 2. wrists and hands are often affected 3. weakness and pain in the quadriceps (upper leg) 4. difficulty in swallowing in half the cases 5. unresponsive to prednisone.
The muscle biopsy needs a thorough analysis by the pathologist and can take a few weeks. If there is IBM, it will show inflammatory cells invading muscle cells, vacuolar degeneration (especially rimmed vacuoles), plaques of abnormal proteins (especially beta amyloid).
Often, there is overlap - some aspects of IBM may show but not be important enough to receive the official diagnosis. I was lucky enough; my neurologist did a differential diagnosis with me. Complete results of the biopsy in hand, she checked all the findings with the list and eliminated the IBM hypothesis. She said she was quite sure it was PM and that I would respond to treatment. It took some time, but I did.
freelee
freelee
thank you for your responses - My muscle biopsy has not been explained to me and i did not get a copy. when i asked if it showed which myositis the rheumy said not mitochondrial, not herditary, that it is autoimmune. I think I may ask for a copy of the muscle biopsy report.
deleted_user
deleted_user
If you want technical info on either polymyositis, dermatomyositis, or inclusion body myositis (if you're not afraid of the scientific jargon), you might want to consult Medscape.
They have articles that detail differential diagnoses, info on lab work, etc.
freelee
freelee
Thank you