Reply To: CIDP big relapse vs mini relapse?

November 6, 2017 at 9:55 pm

Hi Andra Marie and you too Chirpy if you reading the responses. Jeff in Houston here. Been a while since I have been on the board. I had somewhat the same question? I am almost a year in with my cidp (Dec. 4) and have been getting iVig every 2 weeks since early Jan. of 2017. My treatments of Gammunex (sp) have not been particularly eventful like they are for some. I sometimes notice no difference in my condition and other times feel a bit of a bump…until this last infusion. Our home was destroyed by Hurricane Harvey (yes, not a good last year for me 🙁 and we are still salvaging what we can from the house. I spent a couple of hours the evening of my latest infusion cleaning some exterior pots and a set of wind chimes. I then felt a tightness and bloated feeling in my stomach followed by a severe headache. That led to what is hard to explain but from my head to my toes it felt like I was being electrocuted with stabbing pains, not unlike how my first symptoms were when this all started but also different. I tried a hot shower and then lay still but it just got worse. After about 4 hours I gave in to a Tramadol pill (I have taken 4 of these since this all started, not into pill taking) and it calmed everything down. Next day I felt like I had been in a car accident, sore muscles, lingering headache but a whole lot better. A day later back to where I was before the infusion. I only would have a minor, short headache after infusions, nothing like this time. I believe my cidp has been the slow progressive type, although my neuro does not believe in different “types” of the illness. It has taken almost a year for me to feel the soreness in my knee and hip joints. I still maintain daily living skills such as work but not without the daily bouts of tight calf muscles and burning inflamation in my upper leg muscles. But either I have gotten used to it or it is just not that bad. I hate to even complain given what others are dealing with but I now have 2 or 3 questions for those like me and if others might have any insight. So Andra Marie, I would say I had my first “major” relapse but probably have had smaller ones over the last year. My questions are 1) Has anyone experienced an episode like I describe above? 2) My white blood cell count has dropped quite a bit to below normal, nurse says iVig can lower wbc but sending me to a Hematologist to check things out. Anyone one else have the same issue?, 3) Is it time for me to find a good physical therapist to work on the joints and muscles? I feel better after long walks, and finally has anyone else had success with Tumeric supplements for the inflamation? (ok, sorry that was 4 questions) Chirpy Birdy, you were so nice to me when this all started, I am happy for you that your every 5 weeks regimen has kept you sympton-free and hope that can be me someday. Brian F, if you are reading, sounds like you are hanging in there as well. Take care everyone and share if you can. Good luck Andra Marie (We need another Houston chapter meeting!:)

Jeff (fellowcidpguy)