Reply To: My CIDP Story so far…

March 30, 2017 at 9:14 pm

Hi Steve, Sounds like you had RGBS that morphed into CIDP. Have you ever tried Plasma Exchange (PE) following a flare-up? Some (myself included) believe this treatment should precede IVIg so the bad anti-bodies can be purged before starting IVIg.

Most doctors/neurologists think that since a proper PE requires a “port” to move and filter the blood in volume… that many people would not want to undergo “port” procedures. Unfortunately for me, this thinking resulted in my having substantial axonal damage. When I think back to 2008 and how the neurologist phrased my treatment options, making me choose IVIg over PE, I want to go back in time and select PE. I would be walking today if I had PE then. It wasn’t until 2009 that I was finally given PE by a neurologist at a Center of Excellence. I felt improvements within 3 days following my first PE. A year or so later, I found that PE put my CIDP in remission.

Not everyone improves with either treatment option and some don’t respond at all to one or the other. I think PE gets a bad rep from neurologists who are less experienced treating CIDP. You might want to discuss PE with your neurologist next time you have a flare-up.