Hi Mrs. D, (Im sorry that this is so long)
I love your buttercups! I've been browsing through some of your posts and I see you have a wealth of info on drugs, supplements, etc. When I get settled, I want to pick your brain on some stuff.

I cant say I was worse after the cytoxan. (Other than the day after infusoin when I couldnt get out of bed) And even the 80 mg of pred daily (except for weight gain and hi BGs). What was happening to me in Jan and Feb 2010 was that I would wake up in the middle of the night and my ankle would be paralyzed. More right than left. My brain would say "move, move", but there was NO response. Very scary. I stopped the alpha interferon/ribavirin for the Hep C but continued for awhile to get these attacks (although in all fairness, I did have a minor attack like this in Jan 2009 before meds). My neurologist said it was actually nerve strokes. Then the numbness sets in, then the pain follows.

The scary thing is that three days after my maintenance rituxan in
March, I had another one of these attacks. THe doctors, amazingly, are dismissing it. THis is the same neuro who kept telling me the vasculitis is under control becasue I havent had any more attacks. Then when I had this one, her response was - Well, it was a small attack. The rhematologist said - Oh you had a reaction to the rituxan. So what? As if its not big deal. BUt this is a big deal becasue these events are why I need a cane to walk now.

I know that rituxan is used for my lymphoma and for HepC related vasculitis. But I am so afraid that I am having another paradoxical reaction and will get more attacks from it.

At first my doctors (except one - the rheumy) were suspecting the interferon as stirring thigs up in my immune system and making things worse, and when I voiced frustration that there there was lack of agreement, now they are presenting a unified face and saying that its the Hep C that is causing everything and I should go back on interferon.
I know I sound paranoid, but I think there is a reluctance to blame a drug (especially the only drug right now for Hep C. Even the protease inhibitors that were just approved are in addition to interferon, not in lieu of)

INterestingly, my hepatologist is sort of one the fence - on the one hand she is agreeing with the rheumatologist and a researcher at Rockerfeler U that it is the Hep C. BUt she also says to me - I cannot see you giving yourself this shot every week after what you went through.

So you see, this is why I feel that I need some totally unrelated opinions. I used to feel marvelously better right after my plasmapheresis but I cant even say that anymore.

Most days all I can do is get through work and come home and collapse. THen sometimes I have some really good days. I am just so confused.

ANy comments you have would be appreciated. THanks.

DonnaMae (actually I'm usually plain Donna but I think you have another Donna.)