← Return to Chronic Inflammatory Demyelinating Polyneuropathy and IVIG reactions

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@cheentsia

I did 3 rounds of plasmapheresis while in the hospital & rehab last summer & fall. The first round was 5 sessions every other day. I improved, but after about a week regressed to not being able to walk or use my hands. The second round was 6 sessions every other day & the results were the same. I improved, was sent home, but then a week later was admitted back to the hospital, not being able to move at all. The third round was 6 sessions every other day, but this time I was also given steroids. I improved enough to go back to rehab & eventually home. In addition to the steroids, I continued plasmapheresis every other week.

I'd initially been diagnosed with Guillain Barre, but after 8 weeks & all my ups & downs, the diagnosis was changed to CIDP. I sought a second opinion at Mayo last November & they confirmed this diagnosis. My Mayo neurologists also encouraged me to try IVIG again, despite it not working previously as they explained I'd been given the dosage for Guillain Barre. I abandoned plasmapheresis to try IVIG again which I have been doing weekly along with steroids for the last 14 weeks, I don't feel that the IVIG improved my symptoms & I had unpleasant side effects. I regret not continuing with plasmapheresis as it was working along with the steroids & I did not have side effects. I meet with my Mayo neurologist in a few days to discuss a treatment plan going forward.

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Replies to "I did 3 rounds of plasmapheresis while in the hospital & rehab last summer & fall...."

Hello @cheentsia, I would like to add my welcome along with @govisri and others. It sounds like getting a second opinion was helpful to confirm the CIDP diagnosis. Can you provide an update on your new treatment plan after your upcoming Mayo neurologist appointment?