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Old 03-25-2009, 02:14 AM
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Raglet Raglet is offline
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Join Date: Jul 2008
Posts: 229
15 yr Member
Raglet Raglet is offline
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Join Date: Jul 2008
Posts: 229
15 yr Member
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The only treatment that shows some benefit is Rituxan but since it's so toxic, they wait until you're in really bad shape before trying it.
Actually, in my experience, rituxan really isn't very toxic, especially in comparison with some of the other immunosupressants that are truely horrendous. I have had many years of iv cytoxan which supresses the entire immune system (basically it's chemotherapy) and have been delighted to switch over to rituxan about 2 1/2 years ago. Rituxan is very much more specific, it just depletes my b cells rather than hammering my entire immune system, which is just great. Cytoxan made me really really ill, rituxan, although it is still a form of chemo, doesn't, as it is so targeted and just takes out one part of my immune system.

Obviously no one would want to have any of these treatments unless they absolutely have to, but for those who have to then rituxan is definitely the way to go although it is very expensive and difficult to get funding for. Everytime I have it (two infusions) it is $20,000.00 which is pretty out there really. My b cells are again on the way back, so I will be having another round of rituxan sooner or later.

I don't have Anit-MAG, but have lupus which is also an autoimmune condition and has given me a lot of problems with PN (sensory and motor). B cells are involved with the production of antibodies which then attack me, so depleting my b cells really helps.

hth

raglet
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