Experimenting with tx

April 14, 2009 at 3:28 pm

Hi…I’m not your mom’s age, but I have very aggressive CIDP. I was in the hospital nearly 9 mos and at one point had 31 doses of IVIG in a row, which didn’t do anything. What my doctor figured out is that my body couldn’t get any benefit from the IVIG until my plasma was washed out. The plasmapheresis didn’t work by itself because my body produces antibodies really fast. I have to get plasmapheresis and IVIG. My doctor experimented with 5 days of plasmapheresis over 7 days and then did 5 days of IVIG. That seemed to make a big difference. After that, they determined I needed 1 day of plasmapheresis and 1 day of IVIG every week to keep me from re-experiencing total paralysis. Most of my 9 mos in the hospital was experimenting, but when they combined the plasmapheresis & ivig tx regime it only was a matter of weeks before I was able to walk out of the hospital with a walker. I know it is really frustrating for your mom, but having hope is a huge part of the battle. The other part is having doctors willing to try various combinations of treatment until they find one that is effective. Hang in there & know that we are all rooting for your moms recovery.

God bless you, your family & your mother.