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Old 06-20-2010, 08:44 PM
NANCY W. NANCY W. is offline
Junior Member
 
Join Date: Sep 2009
Posts: 20
10 yr Member
NANCY W. NANCY W. is offline
Junior Member
 
Join Date: Sep 2009
Posts: 20
10 yr Member
Default did you get funded for Rituximab?

Quote:
Originally Posted by jrip View Post
I'm a 75 year old male and have had Anti-MAG demyelinating polyneuropathy for probably eight or nine years. It began with a numbness in my feet. I became aware of it trying to walk on beaches while hunting. My balance was poor. I began losing weight, mainly muscle. It was at this point that I was diagnosed with neuropathy. My neurologist put me on Cytoxin, which seemed to arrest it for awhile. Lately my balance problem returned with a vengeance.
I just returned from a visit to a neurologist at Virginia Mason, who told me after some tests that my neuropathy is quite bad. I walk now with the aid of a cane. He told me of a controlled study for Rituximab that concluded it is an effective treatment in patients with A-MAG-DP and suggested I consider it. Any benefits only last a year and, as one posting mentioned, it is so expensive I'm not sure my insurance will go for it. I'm trying to make up my mind whether to give it a try. Sometimes I have pain but for the most part the neuropathy's effect has been on strength and mobility.
Hi. You and I share the same experience and disease. I am still working with OSHU trying to get funding for the Rituximab -- which apparently is as state-of-the-art for our condition as it gets. Were you able to get it funded? How are you doing?

Nancy Walker/Oregon
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