kostaskavas

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  • February 8, 2018 at 7:20 pm

    Finbarr,

    How are you doing after your HSCT? Since I came across this forum, I’ve been interested in pursuing. My CIDPO continues to get worse after IVIG, Prednisolone, sand Plasma Exchange. The bi-weekly IVIG keeps the neuropathy at bay, for the most part, but I continue to get worse over time. at 37, I feel I can fight this fight and live a more normal life and would be curious to see how everyone is doing who has tried it. I plan to reach out to the team at Northwestern to apply and learn more to ultimately see if its right for me. I’ve read the requirements and feel like I’d be a perfect candidate if all roads lead me to that decision.

    February 8, 2018 at 7:01 pm

    New to the forum here trying to educate myself on new, progressive treatments. After 4+yrs of IVIG and slowly getting worse CIDP (37 yrs old and functioning well), I wanted to try something new, so Plasma Exchange it was. I went in for the first of 5 consecutive treatments over the course of a week and a half. The first one was done 3 weeks after IVIG and I felt worse the next day. The second treatment followed 2 days later. The following day I was unable to walk, and about 80-90% of my body was severely numb. I could not get up without assistance and was a very downward trajectory following one of the best months I had had in several years. Needless to say, the PE had a strong adverse effect on me and 2 months later I still haven’t recovered. There must have been good things taken out of my system, which set me back. I hope to recover by increasng my IVIG dose to get back to “normal.”