I visited with the neurologist last Friday afternoon and had a “booster” plasma exchange. The PE didn’t wipe me out as much as the initial PE series, thanks be to God.
The neurologist was very encouraged by my response to the first series of plasma exchanges saying he would have been pleased with a “factor of 1 improvement”, but my actual was a “factor of 2”. It had been 3 weeks since the first series of plasma exchanges had completed. The improvements continued for about 2 weeks after the initial PE series, but I had started to regress during the third week (last week), so the neurologist didn’t even see me in my best condition. 😀
The blood center doctor said that typically 2-3 weeks is the initial duration of the plasma exchange effect, but that the duration of the effects typically gets longer. So we hope to extend the improvement cycle to 3+ weeks.
So unless my improvement cycle gets shorter or I have a set back … the neurologist plan is to [B][U]continue treating with plasma exchanges alone [/U][/B]and prescribed 2 plasma exchanges on consecutive days every three weeks for the next 4-6 months. :confused:
We discussed IVIG, but the neurologist was so encourage by my response and progress with PE alone that he recommended holding off for now.
I would like to hear responses as to anyone else’s experiences with PE alone and your advice/wisdom on PE alone success for CIDP and the plan of holding off on IVIG (especially those of you who are being treated at Johns Hopkins for their neurological renown).
I am also undergoing physical therapy and it is scheduled every Wednesday and Friday morning from 7:00am until 8:00am. The PT consists of a short stationary bicycle warm up, a mild workout with leg weight machines, balance, moving a towel on the floor with my foot, and squeezing a clay putty and grip device.
I am scheduled to see an endocrinologist for my diabetes diagnosis. My glucose tolerance numbers were not significantly out of normal range (104 versus 100), so I’m hopeful we will find out that this diagnosis is incorrect.
Thanks for all your prayers, advice and encouragement as I continue to battle this CIDP.