Today, almost a week out from my second 5-day cycle of IVIG infusions, I’m feeling a return of some of the strength in my legs. Hallelujah! Because of the extensive nerve damage, especially in my left leg (conduction was down to 20% of normal on my test),I had already accepted that my legs and balance were permanently damaged. But suddenly I can walk halfway across a room without my cane, wobbly to be sure, but without feeling as if I’m going to fall. Fatigued, yes. That short walk was exhausting, and I’m going to be careful not to over do it. But I’m thrilled beyond words! On top of the first cycle of infusions getting rid of the worst of the nerve pains in my legs — well, I never expected this to happen! I hope every one of you will experience this, if you haven’t already. This is a dreadful disease, and I wish it could be wiped from existence.

Sandy

Are the bumps generalized, or do they occur on parts of your arms touched by the infusion tube or the tape used to hold things in place? I’m seriously allergic to the adhesive on some medical tapes. After extensive back aurgery I developed bad “bumps” that turmed into bleeding, weeping blisters around every incision site (and there were lots of them). It was a mess, and very painful as well as itchy. The hospital nurses had to change my dressings every day, and my husband had to continue doing that for me for several weeks after I came home. I also know people who are allergic to some types of IV tubes (some are made of latex). My IVIG infusion nurse atsrted using paper tape when I developed a reaction to what he had been using, and the problem went away. If the reaction is all over your body, it may be an allergy to the medication, and you need to have it looked into. Have you told your neurologist about it? He/she definitely needs to know!

BTW, my neurologist and others in the same practice, all of them regarded as top doctors, never prescribe steroid therapy for neuropathy because they feel it’s too dangerous and has too many serious side effects. You know how rare CIDP is, but my neurologist is treating 5 cases, including mine, because other neuros refer them to him. He has one patient who has been off IVIG for almost a year now with no backsliding. He regained most of his function. But he’s much younger than I am, is otherwise healthy, and has a relatively mild case, while I’m older with other problems and had already lost 75-80% of the nerve function in my legs by the time I was diagnosed. Age matters a lot with this disease.