Reply To: Anyone experience "Freezing Episodes?"

September 19, 2012 at 4:55 pm

There’s nothing wrong with getting a second opinion when things aren’t working out, but it is rash to call a neurologist’s recommendation to try CellCept “idiotic.” I have been on CellCept for almost two years now and my CIDP is under control. Of course patients differ in their response to various treatments for CIDP, but it is not clear to me whether Dotti even tried the CellCept regimen.

CellCept does not have an immediate effect, however. In my case, I took prednisone and CellCept. The prednisone was slowly tapered to zero over the course of a year, after which I have relied solely on CellCept. I am happy not to need IvIg treatments.

My recommendation for anyone with CIDP is to find a neurologist in whom you have confidence, then follow that doctor’s treatment plan. If it doesn’t work out, try something else and, if necessary, try another doctor. But keep in mind that CIDP is a difficult disorder to treat and individual responses to treatment vary.