Reply To: rituxin treatments

April 5, 2013 at 8:56 pm

the pro’s for the sct (of coarse this is all my opinion from what i have read) is that once you have it done you have a whole new immune system. they deplete your b cells with rituxin and then your t cells with cytoxin. so basically your immune system is brought down to 0  and then “restarted”  kind of like rebooting your computer–lol.  so imo the pro would be that as long as the diagnosis is correct for cidp then it would work because you would have a whole new immune system which is no longer attacking you.  the cons are its still a clinical trial, insurance coverage may be an issue, the only place doing it is northwestern in chicago–so can’t have it locally, would need to be away from home/family for 6-8 weeks.  a big con for me, is work, i own a small business in the mental health field and i cant just close down as my residents require 24/7 care.

i just am taking it one step at a time, once i go out to chicago next month, if i get accepted then i will start on the insurance issue, then if i win that battle i can work out the work issue—–

there is a face book page called cidp-sct that has tons of sct info. i have not joined the site because it is an open site, which means everything you post will go all over your fb page for your entire friend list to read.   i am a pretty private person, and although my family and close friends know what i am dealing with, im not ready for it to be that public.

do you have symptoms anywhere else other than what you listed? on my emg/ncv i only show damage from the knees down. I have recently noticed that when i wake from sleeping my hands sometimes feel numb, they come aroung after i move around, but it worries me, because in the beginning my feet used to do that, then come back, and now they just stay numb.  i was diagnosed in june of 2009, so am going on 4 years without finding a treatment that works—frustrating.

when you say dartmouth-hitchcock hosp. are you referring to the one in VT?   that isnt too far from me, 3hours, i have never been there as a patient, but have heard it is a very good place.      you have me curious on the anti-inflammatory diet, i plan to check it out.  i would prefer to not have any foreign medication/chemo in me either–i swear once i get this cidp fixed i plan to stay as far away from medical professionals as i can.                                           Lori