My CIDP Journey

    • Anonymous
      December 24, 2007 at 9:43 am

      Hello, My name is Randy B and like many others, suffer with CIDP. I was prognosed by the late Dr. Stevens with confirmation by the Drs. at Mayo in 1994 and have literally recieved hundreds of plasmapherisos exchanges. Recently the potential benefits with CIDP via Rituxan was introduced. I have a follow up visit with my neurologist from the Froedtert Hospital on 1/2/08. (No sense in waiting to max out those deductables!)
      I am somewhat confused, as the use of Rituxan is not commonly understood. I do have a spike in my GM1 antibodies, and of course have all the fun with weakness, tingling and fatigue that comes with CIDP. I try (probably to hard) to lead a normal life.

      I would appreciate reading about how others with CIDP have responded to Ritxan. I have concerns how the Rituxan is utilized in conjuntion with plasmapherisos, any experiences would be appreciated.

      Thanks and have a Blessed Holiday Season.

    • Anonymous
      December 24, 2007 at 4:58 pm

      Hi Randy
      Welcome to the Forum. Although, I must say that you have had CIDP a lot longer than me, but I have found this forum to be amazing in the short time I have been a member. There are some VERY knowledgeable people here and VERY supportive too.
      I’ve had IgM MGUS variant of CIDP for about a year and a half as far as I know, diagnosed in about September this year. I am currently undergoing the Rituxan infusions (3 out of 4) as the only medical cure prescribed to date.
      Others like Norb and Allaug have had Rituxan too, as well as other medications like you.
      You may want to check through the thread called “CIDP – Rituxan treatment”.
      Good luck and congrats on trying hard to keep going. I too am trying to keep active as much as possible and stupidly ran 5 km a couple of days ago. Yesterday and today my legs are like lead, the numbness is way worse (hopefully temporarily) and I can barely get up and down stairs without pulling on the railing to help. I found that the elliptic trainer does not cause as much misery afterwards. Maybe it is the pounding during running that shakes the heck out of whatever nerves still exist.
      Best wishes for the season and good helath in the New Year. Keep posting!