Anything after rituximab

December 9, 2008 at 12:53 pm

I have just joined this international forum. It seems to me that the greater numbers of you may provide answers.
A brief history of my CIDP is
2001 September Sensations in finger tips
2002 July Diagnosed CIDP
2003 September Spine Operation to free up my spinal cord.
2004 July. Second post Op check
2005 Problems now with hiking over rough ground. I fall down often.
2006 This winter, the cold turns my face and hands blue black
2007 March. Walking problems and balance get worse, falling more often, hands much less dexterous
2007 July. Back to hospital, steroid trial.
2007 September. Steroids are failure.
2007 October. IvIg trial
2007 November. No significant change from IvIg
2008 February. Repeat Ivig
2008 March. Decision not continue with IvIg
2008 April. Nerve biopsy
2008 July. Rituximab treatment
2008 October. Neurologist concludes that immunosuppressant treatments are unlikely to improve my condition, because the nerve biopsy showed deterioration to the nerve axons rather than the myelin, and there was no deposition of a protein called amyloid
Now I walk with a rolator, I cannot do anything while standing unless I have support, and I am totally dependant on sight for balance. my muscles are disappearing, particularly in my hands.
So far I have not noticed any change for the better, if anything the downhill slide has continued.
My questions are; Is rituximab the final option, and is it common to get repeat treatments when no improvement is apparent.
Thanks for looking