September 9, 2008 at 3:06 pm

Best of luck with you IViG thing- seems to work for many. 6 months later, for me, they’ve abandoned it and trying CellCept? It’s ALL so much a “wait n see” thing!

But, just to let you know- I really didn’t have headaches w it- oplenty of fuids and caffiene are good, though;-) Hope and pray it works!

Hey, all on the neuros I’ve seen say I’m “not that bad” as to need Plasma Exchange- yet many of you recommend it, say I should demand it, etc- Dr Cornblath, ogf the GBS-CIDP Board, Johns Hopkins fame, tells me the Cellcspt should “show results in a month of use”. They’ve tried IvIg, now cellcept and, of course, I’ve been on 50 mg of Prendisone, all the while (a year) Whhen do I attempt to plant my foot firmly and/orcheck myself in to a hospital? “Not that bad”= to them, on SSDI, unable to do small chores, haven’t slept in a year and difficulty with stairs?

ANYWAY, BEST OF ALL with your IvIg- since my first infusions, I’ve met over a dozen folks with CIDP using it, well, in the Roanoke area. I will say, however, that some seem to resond to different BRANDS of product, differently. (OctaGam vs Gammaguard, for example) Just something to keep in mind;-)


If gerbils are the axis, Guinea Pigs are the Soul of the Universe;-)