I finished a 5 day infusion of high dose steroids on Friday. That week was one of the best I've had in an extremely long time. I was full of energy and my rheumatic and nerve problems l were dampened. By yesterday afternoon, back to normal and feel crap again with pain.
I've tried two lots of ivig and felt it just flared the sfn. I have had the steroids now but feel rubbish and no benefit. My neuro suggested cellcept (mycophenolate mofetil), a type of immune suppressant. Has anyone had any experience with this. I have sfn everywhere and it suggests a ganglionooathy. Also have ankylosing spondylitis. The drug for that most likely won't help the nerve disease. It's an absolute world of hell having more than one thing as they are equally vicious and destroying my life.
Has anyone got any thoughts on what else one can try once the ivig and steroids have been given a go.