Reply To: What's your typical reaction to your IVIG treatments?

July 9, 2017 at 9:36 pm

Hey Bryan, same for me this time after my infusion. Remember, I am on an every 2 weeks cycle and while I had the best 4 days in a long time 3-4 days after my previous infusion, this last one was the complete opposite. Extreme inflammation in thigh muscles and more nerve activity in my calves. Stronger inflammation in the forearms but nothing like the legs. Really bummed me out as I had been feeling so good. I am calling this a mini relapse but today was better so maybe I should not be so concerned. Saw the neuro last week for my 6 month elvauation and he did the usual strength tests and said I was doing very well. But because of my recent slide will keep me on every 2 weeks for now. He does not necessarily agree that every cidp patient fits into one of 3 categories ( I still think I am the slow progressive version) and likewise does not see a tendency for a general 1-3 year active pattern of the disease. Instead believes every patient is different and can’t be categorized. I like him but hard to not want to have some expectations with this disease. Told me to keep as active as possible which still makes me feel better than to just sit around watching sports on tv. Keep posting your progress, good or bad but let’s hope GOOD. Jeff