Mycophenolate Sodium

    • Timmceagle
      November 24, 2016 at 11:28 pm

      Does anybody have any experience with Mycophenolate Sodium (Myfortic)? My Neuro is suggesting this as my next “trial” – 360mg twice a day.

    • Jim-LA
      November 25, 2016 at 3:15 pm

      The drug is in Phase 3 Clinical Trials and expected to finish in 2018:
      https://clinicaltrials.gov/ct2/show/NCT02494505

      You’ll also find a reference to it on page 9 of this GBS-CIDP publication:
      https://www.gbs-cidp.org/wp-content/uploads/2012/01/CIDP.pdf

      CellCept is the version of the drug that has often been discussed in these forums. You can do a keyword search to read those discussions.

      Best of luck finding something that works for you. Let us know if you try this and the outcome.

    • Timmceagle
      November 25, 2016 at 8:02 pm

      Thanks for that Jim. My “terrorist” cell count is still low from Rituximab 18 months ago. My Neuro is checking to see if it is okay to take it on top of the low cell count, and if so I will start immediately. It has been 7 1/2 years now and though I have definitely improved with my existing treatments, it is too slow for my liking.
      It might be some time to give a definitive result but I will let you know the outcome.

    • Jim-LA
      November 26, 2016 at 12:16 am

      Hey Tim, I’ve been on Rituximab since early 2015, after having been stricken with CIDP in 2008. My last maintenance dose of Rituximab is scheduled for Jan 2017. Although I’ve experienced improvement, I still cannot walk and my wheelchair appears to be a long term need. I really hope you have found a solution that gets you closer to recovery. Best of luck!