Reply To: Say Hi To the New Guy

July 10, 2019 at 8:39 am

I was diagnosed with CIDP in 2011 and have been on IVIG ever since. My neuro started me on Pred rightg away as first line of treatment but it quickly became apparent that I could not handle being on Pred. So we switched to IVIG and I have been getting infusions ever since with good results. I guess I am one of the lucky ones because IVIG does help me. I caught my CIDP pretty quickly after onset as it came on after a flu vaccine so it didn’t take years to diagnose. The quicker you get on treatment to stop the attack on your myelin the better you will be in the long run. Once your system attacks the axon nerves you can’t repair them. So please get a second opinion with a neurologist that is familiar with CIDP. I am lucky, as long as I get 35 grams of Gamunex IV every 5 weeks I don’t have any symptoms of CIDP. Well, except I am a little weaker in the legs then I was when younger but not sure if that is just age related or CIDP. I am 55 years old and doing really good. The bad thing is that IVIG doesn’t put you into remission like some of the immune suppressant drugs can. My neuro thinks I might be in remission so we push out the infusions to 6 weeks and I start to get symptoms in the 6th week so we know I am not in remission. My body needs the Gamunex to keep things in check. I often think of trying immune suppressants but am afraid to change things since I have such good results with IVIG. What if I change things up and start to decline? So I just stay the course. So once you find something that helps you out your body can start to heal and gain strength and hopefully stop feeling numb. I live in MN and go to the University of MN. I see a doctor that specializes in CIDP. He worked hands-on with the Stem Cell Transplant trials going on in Chicago for CIDP.