sister began cytoxan

January 14, 2010 at 12:27 am

i know i’m just the sister, but we are all in this together, right?
Sandy was diagnosed with CIDP in Aug at 29 and has since turned 30. Since August she has RAPIDLY declined and is completely paralyzed, on a gtube and trach. We have done everything. Ivig, Plasmapheresis, Rituxin + prednisone all the while.

After reading these posts I have to wonder if the previous treatments made her worse? Yet, i know the Drs did what they thought would work and what had worked in other cases that they knew of.

She moved her jaw for the first time since thanksgiving a few days ago. They started her with Cytoxan on Monday. We are hopeful that this will do the trick.

She is a music teacher, piano player and singer. Newlywed ready to start a family.

Loss of hair – it will grow back.
Sterility – they’ll adopt
Stomach – she already feels like crap

We’ve “talked” about all of these things. (we “talk” by speaking through the alphabet and she blinks when we get to the correct letter)

She just wants to join the world again.

I’m so glad I’ve found all of you. I can’t wait for her to be able to sit up and read.