I came down with a very severe case of CIDP in March & April of 2002. It began slowly with numbness in my hands & feet the about the middle of March. I was then dx with GBS & Given 7 PE treatments in 10 days & sent home to recover. By April 27th I could no longer walk, raise my arms or legs up & had lost the use of my hands. For the next 8 months I was given bi-weekly IVIG & steroids, which did very little for me.
I was then given the cytoxan protocol from Jan 2003-Sept 2003. It began with 5 infusions of 1140 mg of cytoxan in a hospital setting, & then monthly for 8 more months of 1800 mg each. Each time I was also infused (via a port) with solumedrol & Zofran. It did completely arrest my CIDP & slowly I began to recover. After over two years in a wheelchair, I started walking again. First with a walker for a few months, then two canes, then one cane. I did need AFOs for foot drop, which unfortunately ended up being permanent. I gained back about 80% of the use of my hands. I got my driver’s license back.
Since the fall of 2004 I have lived a fairly normal life for someone my age (I am now 56), minus the sports I used to play. We travel quite a lot, still snowmobile, I attend water aerobics twice a week, eat out with friends & family, have holiday dinners, babysit our grandson, etc. Without the cytoxan, I believe the CIDP would have progressed to the point where my lungs & diaphragm would have been affected, probably resulting in death. Most importantly of all, I have had no treatments since Sept of 2003. But I would only recommend this for someone with a severe case of CIDP, as down the road I could pay from having had chemotherapy. It is a tough decision for anyone to make, but for me it was a “no-brainer.”
I am probably the only person I know on this forum who had to resort to the pulsed (IV) cytoxan protcol that you are currently on. Emily used it for 6 months, when nothing else worked, but then had to go back to weekly IVIG afterwards. Back in April of 2002 I was at my worst; unable to walk at all, couldn’t lift my arms, & had no use of my hands. In Duluth, MN I was first dx with GBS & I began with 5 PP treatments, which seemed to do nothing to halt my illness. I was then sent to Mayo for 3 months as an inpatient where I was rediagnosed with CIDP. There I had 5 days of IVIG, then IVIG twice a week, then solumedrol infusions were added to my treatments. Nothing was helping me to get anything back.
I was basically told by the neurologists at Mayo that I had the progressive form of CIDP & that I would eventually die from it. I went home in this condition & my husband took 3 months off of work (FMLA) to take care of me. By that October I began seeing Dr. Gareth Parry at the University of Minnesota. He tried an extreme protocol for 12 weeks every Friday of Plasmaspheresis in the morning, then IVIG infusions, then solumedrol. By the end of the 12 weeks I felt more dead than alive. He then said it was time to try chemotherapy treatments using cytoxan. So for the next 9 months (Jan- Sept 2003) I was on monthly cytoxan infusions (1800 mg) per month in an effort to wipe out my immune system by bringing my white cell count down to zero. By September my white cell count was so low we discontinued the treatments.
I tolerated the cytoxan infusions extremely well, used the Zofran for nausea, but did lose my hair. The treatment worked as far as arresting my CIDP & I have not been on any treatments at all since then. By the summer of 2004 I began walking again (with AFOs & a cane) & also got most of the use of my hands back by then also. I have been on no treatments at all for my CIDP since Sept of 2003. I am very satisfied with the cytoxan protocol & feel it saved my life. I drive again, go to water aerobics twice a week all by myself, can walk around the grocery store, the mall, etc. If you have any more questions, please feel free to email me. Best of luck…