Reply To: CIDP Diagnosed / Recovered / My Story

January 1, 2020 at 9:50 am

Thank you for sharing your story and the chronological sequence of events. It is inspiring to hear how well you have progressed over the past 18 months!

As we have heard from various others on other posts, it is frustrating in that the treatment and journey can be so different for many. Some have stated that IVIG on its own has done the trick and many others have used prednisone etc.
I have been asked to go in for my first maintenance dose of IVIG tomorrow. (75 g of Gamunex over 3 days). I have seen no change in progression of symptoms since my loading does. They want to try this what they refer to as less invasive treatment first after which they said they would look at other options including corticosteroid.
I like facts and the piece I find find frustrating is that there do not seem to be many statistics about % of success using different methods due to the uniqueness of each persons disease.

I will try this next three day treatment after which feel if not successful, will need to look at other options quickly including potential second opinions on the path forward.