Hi all, I’ve just discovered this community and after looking at some posts and responses, what a great place for support. I was diagnosed with CIDP 5 years ago. My understanding now is that where were a number of predisposing factors I was unaware of, but the triggers, I believe were receiving the DTaP vaccine, then the H1N1 flu shot, then getting a really bad upper respiratory infection. I know how fortunate I was to get a quick diagnosis, and to have been IVIG responsive and I feel I’m standing beside all of you that were more impacted before getting a diagnosis. There have been months that have gone by when I forget I have CIDP until I realize I’m getting an infusion that day and I feel incredibly thankful for that.
Over the past 2-3 months, I’ve noticed symptoms coming back and not being resolved as fully with the IVIG treatments. It reminds me about how much of the journey with CIDP is psychologically impactful. One day, I’m obsessing about every level of possible numbness and degree of clumsiness, then the next it’s like “screw this” and I’m up doing everything I can. My neurologist has been very helpful and gave me another loading dose of IVIG and increased frequency from every 2 weeks to every week this month, but I’m not convinced it’s getting me back to where I was, which means I’m progressing. I’m equally grateful for the years of stability I’ve had as I am terrified of what the future holds. I know options are still out there, and I’m curious to know if anyone has had success with Imuran, CellCept, or another immunosuppressant. Anyone combine steroids with IVIG? CIDP seems to have so many different variants and responses and I’m hoping there is someone here who has gone through feeling like IVIG wasn’t helping as much anymore. A recent study I found showed 85% of folks with treatment resistant CIDP showed improvement with further adjustments in treatment, so a large part of me remains very optimistic, but sometimes it feels like hoping that they’re going to finish building the roller coaster as you are getting strapped in to start riding.
Thanks again for being here and all you are doing for eachother!