Breaking News!!! Elvis in Remission

My EMG test are a little better than half the norm. takes me 45 min to walk a half mile with a 4 wheel walker. I have been stronger and walking more, since I started the Rituxan in feb. 2010. The past couple of months, the gains have been exponential. They want me to try and wean off of the prednisone, (down to 10mg daily) and start spacing out the infusions, (currently every other month) and come back in 6 months. Also we are trying to get medical records of my spinal tap, muscle biop, and nerve, biop, emg test from over 10 years ago to compare. I am supposed to get a call today with the final word on the SCT, but the nero told me no last week. So unless Dr. Burt overrules that, ( I doubt) they won’t do it until I fail coming off of the drugs is what I think.. Fine with me, SCT is no cakewalk… I will gladly pass if I can.. Hope this helps..
soapy.
ps. they agree with 5 other neuros, I have seen/had over the years, I do have CIDP, or did maybe *smile*

edit: I also have some deep tendon reflexes now. I have had none since this started, been around 12 years

Just got a call from Chi town. They are going to stop the Rituxian infusions, and wean off the prednisone. See if I can soar like an Eagle without it.
Keep the faith, Strength a peace to all.
until then..

soapy

thanks for the support. 😉

It has been over a week since I was due Rituxain. I have started the pred taper, coming off of 10 mg, over the next 10 months. 1mg monthly.
I have had some numbness and tingling in my feet. It comes and goes. Been working harder than a cat climbing marble. exercise , walking, could hardly wait for today, not going to work it on a Sunday..
thanks again for your prayers and support.. I will keep you informed how I do..
peace and strength to ya..

Still Improving 6 weeks after due date for last rituxian infusion