Reply To: Daughter with GBS later catogorised to CIDP and new lne of treatment
Thanks for your long response and explanation how things went with Emily. I hope that she is hanging in there with the discontinuation of the ig.
It took me that long to get back on as our Madeleine was not well at all. Yes we see a specialist in John Hopkins and he works with our local Neuro in between visits. We are in Atlanta.
The past two weeks were hell as the JH dr had decided to add Solumedrol pulse in IV to the ivig at the last treatment of ivIg. Terrible results we had a Madeleine who barely could go up the stairs for 3 weeks and had the life of a 90 years old so she was reduced in her mobility ( 3 weeks was the interval between treatments). The JH dr was not aboard at the time for having ivig more regularly and wanted to go his way with the steroid…He had to force me in as 1 I had a guts feeling that it was not right 2 I am terrified by steroids. But he told us that this was the best way to make the ig effect last longer as she starts to relapse at 11 days.
It was like if the Solumedrol had stopped the ivig from doing its job and kept the process or remyelination.
Botton line we landed in the ER last Wednesday and were in the hospital until Friday night.She had MRI and they reloaded Madeleine with 2g/kilo and the ivig will be given to her at smaller interval. They have also talked to us about subcutaneous IG and it is very new. NO more solumedrol which I had the sentiment made her so much worse. we are at day four after the last ig and she can run and go up unaided things that she has not been able to do in a month now.
I must be in total denial but what I read is that 90% of cidp respond to steroid and that steroid makes GBS patients worse off. So now I am wondering if we are not dealing with the later as this precipitated her.