Myositis More Condition_symptoms Does Anyone Know About Inclusion Body Myositis (IBM)?

Does anyone know about Inclusion Body Myositis (IBM)? - myositis more condition_symptoms

There is someone out there has or knows someone who has inclusion body myositis? It is a muscle wasting disease.

I searched the Internet and the prognosis is not good.
Partner of my sister was recently diagnosed with this in the legs, and now needs a wheelchair to go shopping.

2 comments:

izzy said...

Sorry if you already read this.
It is an under-diagnosed because it occurs mainly in older people with multiple comorbidities and are often diagnosed as polymyositis and treated improperly with steroids. Treatment resistant "polymyositis patients over 50 years, often. Theories have been proposed as an autoimmune disease or viral-induced.
There is no effective treatment for the disease, but high-quality randomized trials (RCT) are rare. Many treatments have been tried, unsuccessfully.Consensus is that steroids and conventional immunosuppressive treatments are not beneficial to the hospital. High doses of prednisolone, paradoxically, worsened, while reducing inflammation effect, probably due to increased accumulation of amyloid. Intravenous immunoglobulin is very expensive and require exploring specific immunotherapies ineffective.9.
There is no progress tends to be very slow, but they develop the people, the symptoms at an older age tend to grow faster. Progressive dysphagia is having a worse prognosis and quality of the related life.w
Current StudiesIntravenous infusion of immunoglobulins studied (IVIG) at IBM. The results were mixed, but provided no hard evidence of lasting benefit. Further tests are continuing, but currently do not justify the cost and side effects, routine treatment of patients with IVIG IBM.

The best people to contact to see whether it is ongoing studies, and more ...
Institute of Neurology, UCL
The National Hospital for Neurology and Neurosurgery
Queen Square
London WC1N 3BG
Telephone +44 (0) 020 7837 3611
Fax +44 (0) 020 7278 5069

izzy said...

Sorry if you already read this.
It is an under-diagnosed because it occurs mainly in older people with multiple comorbidities and are often diagnosed as polymyositis and treated improperly with steroids. Treatment resistant "polymyositis patients over 50 years, often. Theories have been proposed as an autoimmune disease or viral-induced.
There is no effective treatment for the disease, but high-quality randomized trials (RCT) are rare. Many treatments have been tried, unsuccessfully.Consensus is that steroids and conventional immunosuppressive treatments are not beneficial to the hospital. High doses of prednisolone, paradoxically, worsened, while reducing inflammation effect, probably due to increased accumulation of amyloid. Intravenous immunoglobulin is very expensive and require exploring specific immunotherapies ineffective.9.
There is no progress tends to be very slow, but they develop the people, the symptoms at an older age tend to grow faster. Progressive dysphagia is having a worse prognosis and quality of the related life.w
Current StudiesIntravenous infusion of immunoglobulins studied (IVIG) at IBM. The results were mixed, but provided no hard evidence of lasting benefit. Further tests are continuing, but currently do not justify the cost and side effects, routine treatment of patients with IVIG IBM.

The best people to contact to see whether it is ongoing studies, and more ...
Institute of Neurology, UCL
The National Hospital for Neurology and Neurosurgery
Queen Square
London WC1N 3BG
Telephone +44 (0) 020 7837 3611
Fax +44 (0) 020 7278 5069

Post a Comment