Complications causing death?

July 13, 2006 at 9:37 pm

When I first met Robert a few years ago via this forum, he was still walking & seeing patients (but no longer doing surgeries), but shortly after that he went to using forearm crutches. He flew out to the Mayo in Rochester, MN to get an accurate Dx a few times, & then had to go into a wheelchair around Christmas of 2005. It was when the CIDP started weakening his arms & affecting his hands that he decided on chemotherapy treatments. His son said that he was having miraculous results while in the hospital, even able to wiggle his toes again, something I can only dream about.

I think part of the problem with CIDP is having to suppress the immune system so much to keep the disease in check. I know his white blood cell count was down to zero when he got the infection; nothing to fight back with. When I had my chemo treatments, I had 3 inpatient (from Friday to Monday, & then was sent home. After that I had one each month for 8 months at our local oncology center. Before that I had had my IVIF & steroid infusions done by a home health care nurse, much more sterile at my home than at a hospital, I think. I also tried not to be around other people when I got to around zero for my WBC.

Someone on this forum once said that the treatments can be worse than the disease itself. I believe that wholeheartedly. But one can die from CIDP; if the disease is progressive & cannot be arrested, eventually it goes into the lungs & diaphragm, causing inability to breathe. I only know of three who have died this way from CIDP in the last 2 years. But one must keep in mind that only about 15-20% of CIDP cases are progressive, the rest are relapsing/remitting. These are the people who tend to do well with regular CIDP & lead fairly normal lives. We need to remember that this is a very serious disease and I cannot emphasize rest enough…