51 weeks post SCT

Anonymous
September 10, 2011 at 6:50 pm

Now that I am coming up on 1 year post-SCT, I thought I would chime in. My SCT one-year anniversary is 9/16, which is coincidentally Mexican independence day. How appropriate, as I am independent of CIDP and now living in Mexico where I will be restarting my career as an English teacher.

I have been completely off CIDP meds since the conclusion of my prednisone taper at the end of October. My walking has improved to the point where I am out of AFO’s and able to wear flats and flip flops (I had given up the latter because of my steppage gait which caused me to slide out of the shoe). I still have a way to go — my left drop foot is not completely corrected, I still have some balance issues and sensory deficits in my lower legs and feet. Mybloodwork is still not normal… red and white cells are still a little off, and my globulins are low, which I believe is the cause of some residual fatigue. However, I am tons better than I was this time last year; more importantly, I believe I can only improve. Without the SCT, I would perhaps be checking out wheelchair models, if not actually sitting in one. I suspect I would by now have sustained organ damage because of the high doses of prednisone which I was forced to take. And I would have little hope of ever living a normal life.

The reason we call this a cure is for the simple reason that the procedure kills off all of the bad immune cells and reintroduces ones own stem cells, which are uncorrupted, into a pristine environment. Yes, I suppose that these new cells could also become corrupted, but the likelihood of that happening is pretty nil, as presumably you would have to be exposed to the same complex of environmental factors which caused the CIDP in the first place.

Sharon