Reply To: Your Progression of CIDP

August 14, 2013 at 8:07 pm

Plasmapheresis helped me the most. I had some improvements after a couple days of treatments. In total I had about 75 treatments over several months.

They installed a tunneled catheter (double line) in my neck and the connections went under my skin and came out in my upper chest. One should stay away from taking showers while this is installed to help reduce the risk of infection. In my case (quadriplegic at the time) showers were something I could not do anyhow.

Had I known at the onset of the disease what I know today about GBS/CIDP/MFS (from my personal experience) I would have started treatment with 3 days of Plasmapheresis followed by about 10 days of IVIG. Unfortunately for me, they did the reverse and the bad anti-bodies were alive in my blood and continuing to do harm to my nerves (Myelin). I consider this to be the main reason I became a quadriplegic.

From my non-medical view the bad (GBS/CIDP) antibodies are already in your bloodstream while you are being treated with IVIG. IVIG stops your auto-immune system from releasing more into the blood stream, but it does little or nothing to kill the bad guys already released. Unlike IVIG, Plasmapheresis will remove (filter out) the bad guys from your blood stream, but won’t do much about stopping your system from producing more. One pass of Plasmapheresis won’t get all the bad guys because some are too deep in the veins at the time. Since the blood is always circulating, the bad guys will soon show themselves again and that is why Plasmapheresis works better after several treatments.

Today I am a paraplegic and able to participate in this forum, thanks to a combination of Plasmapheresis, IVIG, and Prednisone. We are the fortunate ones here on this forum! There are so many GBS/CIDP/MFS sufferers who cannot even type on a keyboard, let alone view the screen. I know, I was one of them for a couple years.