We’re all plugging for you…

May 11, 2006 at 9:25 am

I am so sorry for all that you are going trough right now. CIDP is difficult enough, let alone trying to fight it alone. As far as the pain meds, isn’t Lyrica just a newer version of neurontin, now that the patent on neurontin has expired? Gabapentin is the generic & for some reason works better than neurontin did for me, it is also so much cheaper. It does sound like you have the progressive form of CIDP, especially if IVIG & steroids didn’t help much. I had over 40 IVIGs & 17 PP with no real result, also 21 months of 1,00 mg of steroids weekly. None of it did much for me.
Finally my neuro used a more extreme protcol & put me on cytoxan infusions. It did finally arrest the disease in 2003, I began walking again in the summer of 2004 (after 26 months in a powerchair only) & now I use AFOs & one cane. Please do not give up hope as there are still other treatments out there. BTW when I was getting PP my blood pressure did always drop to drastically low levels, but not when I got the IVIG.
Best of luck, Pam