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Having Inclusion Body Myositis. Cannot Walk And Lost Neck Muscles. Are There Any New Treatments?

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Posted on Sat, 31 Aug 2013
Question: Interested in inclusion body myositis. Are there any new treatmemts? She was diagnosed with IBM disease about 11 years ago in Pittsburgh. Now cannot walk & has lost most of her had muscles and neck muscles.
The doctor said she was a classic case. I think they even took pictures of her arm and hand saying it was spoon like. He was head of the myositis Dept. at UPMC at the time.
doctor
Answered by Dr. Nsah Bernard (1 hour later)
Hello,

Thanks for posting on XXXXXXX

Well I will try to give a summary of this condition to you.
Sporadic inclusion body myositis(s-IBM) and hereditary inclusion body (h-IBM) encompass a group of disorders sharing the common pathological finding of vacuoles and filamentous inclusions. They collectively demonstrate a wide variation in clinical expression of age of onset, associated diseases and prognosis. The patient you are talking about might be having s-IBM given the later onset.
Exppression of s-IBM is variable, but all cases eventually evolve into a syndrome of diffuse, progressive, asymmetric, proximal and distal weakness that is generally refractory to immunosuppressive treatment.
It has no known causes and has both inflammatory and degenerative characteristics. Is the most common acquired myopathy in patients older than 50 years.
No definitive treatment has been proven effective for s-IBM. Treatment is multidisciplinary i.e includes home-care, medical care, surgical care (less likely unless serious complications involved).
As I earlier mentioned, there is no definitive treatment so it will be useless to try to lead you towards a direction that might 'yield no fruits'. Most treatments are still under study. The general treatment is use of immunosuppressive therapy with high dose steroids (which has been reported in many cases not to be successful).

Hope this helps and i wish you the best.
Dr. Nsah
Above answer was peer-reviewed by : Dr. Chakravarthy Mazumdar
doctor
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Follow up: Dr. Nsah Bernard (16 hours later)
Thank you. Are there any multi-vitamin and natural herbs etc. that could make her life a little better?
doctor
Answered by Dr. Nsah Bernard (17 hours later)
You are welcome,

There is no diet plan needed for IBM. She just need to keep a healthy lifestyle and will require counseling and support.

Hope this helps
Dr. Nsah
Above answer was peer-reviewed by : Dr. Chakravarthy Mazumdar
doctor
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Follow up: Dr. Nsah Bernard (18 hours later)
Thank you.
doctor
Answered by Dr. Nsah Bernard (10 hours later)
You are welcome.
Above answer was peer-reviewed by : Dr. Chakravarthy Mazumdar
doctor
Answered by
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Dr. Nsah Bernard

General & Family Physician

Practicing since :2012

Answered : 1704 Questions

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Having Inclusion Body Myositis. Cannot Walk And Lost Neck Muscles. Are There Any New Treatments?

Hello,

Thanks for posting on XXXXXXX

Well I will try to give a summary of this condition to you.
Sporadic inclusion body myositis(s-IBM) and hereditary inclusion body (h-IBM) encompass a group of disorders sharing the common pathological finding of vacuoles and filamentous inclusions. They collectively demonstrate a wide variation in clinical expression of age of onset, associated diseases and prognosis. The patient you are talking about might be having s-IBM given the later onset.
Exppression of s-IBM is variable, but all cases eventually evolve into a syndrome of diffuse, progressive, asymmetric, proximal and distal weakness that is generally refractory to immunosuppressive treatment.
It has no known causes and has both inflammatory and degenerative characteristics. Is the most common acquired myopathy in patients older than 50 years.
No definitive treatment has been proven effective for s-IBM. Treatment is multidisciplinary i.e includes home-care, medical care, surgical care (less likely unless serious complications involved).
As I earlier mentioned, there is no definitive treatment so it will be useless to try to lead you towards a direction that might 'yield no fruits'. Most treatments are still under study. The general treatment is use of immunosuppressive therapy with high dose steroids (which has been reported in many cases not to be successful).

Hope this helps and i wish you the best.
Dr. Nsah