options for IVIG treatments

Hi tjay,

I know the stress you’re in with these concerns and want to encourage you to be an advocate for yourself if you feel like the treatments you are given aren’t working for you. After IVIG I too experience these horrible headaches. (What we are experiencing is called aseptic meningitis and is fairly common with people who receive IVIG–or so I’ve been told.) There are ways to curb these reactions, although I must admit, for me it doesn’t do a whole lot, but it does take of the edge and make the headaches and other side effects not last as many days. If you are going to do IVIG again think about having your doctor write the order for the dose to be run in VERY SLOWLY. This may mean staying in the hospital for several hours (when I do mine, they run it over night then I get up go to work and come back the next night for my next treatment). Also, they can pre-medicate you with pain meds, nausea meds, or whatever else you may need. I usually get Tylenol, Zofran (nausea) and Benadryl. Then, at first notice of the headache they slow the infusion even more and give me more pain meds. One more thing, different brands of the IVIG can also be a route to take–they’ve found 1 brand in particular that I do fairly well with. If your doctors/nurses keep track of the brands they are using with you maybe you will also find a brand you can tolerate.

What I’ve found is that there is no way around CIDP as far as attempting to ignore it. The weakness, numbness, and tingling generally doesn’t just “go away” without treatment. So, I encourage you to try variations on the infusion of IVIG or if that doesn’t work try something else like plasma exchange. I know the stress of being out of work because of CIDP, so I hope you find something soon that works for you.

Good luck to you!
Carly