personally I wouldn't call it a sledge hammer - as compared with many of the other treatments I have been on rituxan is like a tickle with a feather. That's what I like about it, it only kills off my b cells, other treatments like cytoxan (which is iv chemotherapy) kill off the whole immune system. Rituxan's done good things for my central nervous system (my brain) but nothing much for my peripheral nervous system. But, at the end of the day my brain is more important, so I feel fortunate. Well, not too fortunate, had two small strokes a fortnight ago but that's a whole other story

cheers
raglet

I don't have CNS involvement, at least not so far....it has been a while since my last MRI. I 'feel' brain dead so many days. It is such a hard decision. I am a quintessential worry wart, so I am not sure that it is the right choice for me....plus if something bad can happen for me...it does. Not that IVIG Is without risk....it isn't. I think something that can be given in baby doses and backed off of, for me it the right choice. I think I need something added to the IVIG.

I am glad that the Rituxan worked for your CNS issues. It is good to hear something works. Sounds like for PN, it is less effective??

There seems to be a real push for Rituxan lately and on the Sjogren's board, I am not hearing of much success, but that is a whole 'nuther' issue. A few are on Cellcept, but that too packs a punch...I wonder if that can be titered way down? Oh well, much to think about....I have some skin changes lately, that are really a bit alarming.

Well, I dont want to highjack the thread. It would be good to hear if Rituxan works for PN, if any one has that experience.

Thanks for sharing your experience.

I take Rituxan, but not for PN. I take an 860mg infusion of Rituxan every three months for Waldenstroms cancer. For my PN, I take 1800 mg of Gabapentin daily, along with Metanx in the morning, and 50 mg of Nortriptylene at night.

This combination seems to relieve the pain of PN pretty well, except when the IgM in the cancer takes a notion to spike up. When that happens, the PN pain goes up with it. My PN is a outgrowth of the Waldenstroms, so as long as the IgM is soaring (presently at 6,400, should be 350 ) the pain from the PM is soaring right along with it.

Talk to your Dr. about the Gabapentin, and the Nortriptylene. They seem to curb those deep pains pretty well, at least for me.

Ihave found nothing that has slowed or stopped teh pain,, I am almost crawling around,, walking is getting harder,, losing the battle of teh arms and hands working,, i dont kow what to do anymore,, its getting critical in my opinion,,