Reply To: A Year with CIDP

Hey Bryan,

Jeff here. I always like reading your posts as we started this journey about the same time. I too am beginning my second year with cidp. Looking back over a year of Ivig treatments I have some reflections, questions, concerns, …you name it. The one constant I keep telling myself is that the first letter of this condition stands for chronic and I must accept that. My initial neuro told me, we caught it early and there is treatment that will stop it, repair it and reverse it, his exact words. It was my infusion nurse that spent the time to explain cidp more fully and stressed that the goal with treatments was to improve to a state of being “stable” and that was the goal. But stable to me meant feeling normal, like I felt before the diagnosis, and, like you the treatments seemed to be making a difference. The treatments do make a difference. In my case it was subtle, did not ever get a real bump from the infusions but got to the point where I was having days, sometimes 3-4 in a row where I did feel normal but as with any chronic condition it would always be back. Back, but not as bad as in the beginning. The other thing I have learned after one year is that this condition truly is an individual one and as much as you and I want to find someone with exactly the same issues and questions, we all seem to have a unique version of cidp. I think that is one of my biggest challenges, not having a clear path to what my future will be and how long it will take to get there and is there even a “there” to get to. My issue has always been the inflammation part of cidp. I can have some pretty nasty inflammation at times and mainly in the hips, thigh muscles and knees. As far as other typical cipd symptoms, I have had little to none for which I am greatful. No issues with walking, balance, numbness. Really at this juncture of the my cidp it is just the inflammation. I can tell you that you are not alone on the personal issues you describe 🙂 and sometimes I am running to the bathroom. Not constant but does happen now and then. From what you describe, I think 88% improvement is fantastic and you should feel good about that. I don’t think anybody can say that going beyond that stage or even into complete remission is a guarantee but I do believe in mind over matter so you must believe that it can get better. I predict my second year of cidp will include possibly trying a different brand of infusion (I would like to try Privigen). I have been on Gammunex since the beginning. I would also like to explore improving my diet more and possibly try mindfulness classes to see if I can deal better with the inflammation. I also should mention that my blood work started showing a below normal white blood cell count but soon after my infusions it would go back to normal. As a result I am now on an every 3 week cycle instead of every 2 weeks and I think my body is adjusting to that, so far so good. Take care my friend and stay positive. I know that is not easy at times but I refuse to let my cidp win and while I do get down and depressed, my remedy is to stay busy and as positive as possible and remind myself that others suffer from conditions worse than mine. So, improve that golf game! and keep giving us updates. Your fellowcidpguy from Houston.