Breaking News!!! Elvis in Remission

    • Anonymous
      August 22, 2011 at 10:18 am

      +1 for Rituxain. I saw the SCT Dream Team last week. The neruo said I didn’t need a SCT,because I was in Remission…
      about time , 12 years of h*ll .. I walked a mile this morning , just to celebrate..

    • Anonymous
      August 22, 2011 at 7:46 pm

      wow, congratulations! ๐Ÿ˜€

    • August 22, 2011 at 10:49 pm

      Great News !!!!!! How do they test for remission exactly?—are the emg/ncv tests the only tests that can tell for sure, or if there is a measureable antibody is it considered remission when that’s gone? Lori

    • Anonymous
      August 23, 2011 at 8:29 am

      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..
      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

    • Anonymous
      August 23, 2011 at 11:48 am

      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..


    • Anonymous
      August 23, 2011 at 1:15 pm

      Nice to read your good news!

    • Anonymous
      August 23, 2011 at 1:55 pm

      Great news!

      Fingers crossed for you!


    • Anonymous
      August 24, 2011 at 9:25 pm

      Soapy I am so glad for you.
      Keep on walking, dude. ๐Ÿ˜€

    • Anonymous
      September 4, 2011 at 11:53 am

      thanks for the support. ๐Ÿ˜‰

      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..

    • Anonymous
      October 6, 2011 at 12:18 pm

      Still Improving 6 weeks after due date for last rituxian infusion

    • Anonymous
      October 6, 2011 at 12:21 pm


      Great news! Keep on trucking! ๐Ÿ˜€