Diagnosis since Feb,2011

August 31, 2011 at 4:59 pm

[QUOTE=Pam H]I have been where your husband is now, & for a very long time. I have/had a very severe case of CIDP & was refractory to IVIG, plasma exchange (PE), & solumedrol. In other words nothing worked for me at all, spent over 2 1/2 yr. in a power chair with no use of my hands. But this was back in 2002-2004, & it was 9 mo. of cytoxan infusions that finally arrested my CIDP at age 49.

I believe that everyone has a “magic bullet” with this illness, but since we are all so different, it takes a patient neuro to get it right. I hope for your husband that it will be the IVIG, although I would recommend an initial 5 day loading dose. I have studied CIDP for almost 9 yr. now & have never heard of solumedrol not being used for motor CIDP? Since it knocks down the inflammation, it is usual to always try steroids first, so that is new to me.

I am glad he has a positive attitude, that will take him a long way. I lead a fairly normal life now. Since 2004 I have been stable, needing no treatments after the cytoxan arrested my CIDP. I do need AFOs for permanent foot drop & take a cane outside the home. But I drive again, go out alone, do water aerobics twice a week & we travel a lot. I still host all of the holidays, doing most all the cooking & dishes by myself. If I walk/stand too long I get lower back pain, so I use a wheelchair for long distances, such as airports. There is life with CIDP, but one does need a lot of rest. Best of luck to you both, we have been where you are now, & I remember things looking pretty dark back then. But my life is good at 57, can’t complain. Heading back down to Florida on April 12th for 16 days, just bought a condo in Naples for the winter months (we live in northern MN!)[/QUOTE]
I refused steroids as they affect my mood terribly. Went direct to IVIG, but although it has slowed advancement of syndrome, I am not regaining functions. I want to try heavy infusion of steroids, short-term, to see if this is any different and/or effective. Also still trying to find good neuro in Seattle,WA area or btwn there and Olympia,where I live.