Hello All,
I know I've been away from the board since I posted about having the spinal tap. Well, the tap came back and they found inflammation in my spinal fluid. My neuro said that it could possibly be the very early stages of CIDP. The inflam. levels were a low % but enough to warrant IVIg treatments that my Blue Cross is covering and I finally started Monday. I was very excited to finally have some sort of diagnosis and treatment plan!!
Well, the first day went well. Very long 6 hour IV infusion done from a top notch home health org. out of Houston. I seemed to tolerate it very well and was up and around that evening just fine. About 3 hours later I started feeling a terrible aching up the back of my neck and then soon a full blown severe throbbing headache that left me nauseated and curled up in bed. The nurse was notified and after the recommended benadryl and darvocet it seemed to subside.
Next day the nurse returned and as soon as she started the drip my iv site was throbbing and soon there after my HEAD! Excruciating headache like I've never felt before. They had to immediately stop the drip, inject benadryl and solu-medrol. It started letting up immediately. My body was rejecting the infusion. Attacking as if it were an intruder. After a couple hours of monitoring and strict instrucitons, the nurse left and I remained in bed asleep from the meds. Then it came back!! Severe worse than migraine like pain. Went on all nite long...got more solu-medrol and darvocet and kept it bareable until this a.m.!! After 2 more solu-medrol injections today I am 90% better. But no more IVIg until we see what happens next.
I am trying not to get discouraged as I can already tell a difference in my PN in my feet from just the one day treatment!! I hope they can get me stabalized with the steroids and I can finish the cycle! I'm praying for the best news possible.
Thank you all for listening. It's going to be a very loooong summer. I just wanted to vent and share this with you and alert anyone who may be about to have a course of IVIg. I will keep you posted as I can. Much love, ~Mindy

i have read of some people on here having severe reactions if the ivig is administered at too fast a rate. something you may want to look into.

I've got to ask some prelim. questions? Do you know what brand of IG you were given? Do you know the rates it was given to you? Did you take any antihistamines or tylenol before hand? And HOW long did these infusions take? Lastly...how much 'juice' did you get? THese all come into play but it sure sounds as IF your neuro had NOT read the 'prescribing information' and all the possibles for your reaction.
This is one BASIC outline of what and how IG should be given:
http://www.hss.edu/conditions_14271.asp
Do check out IG living magazine http://www.igliving.com/ The subscription is free and you get no junk mail.
Aseptic meningitis is NOT FUN! At all! I'd gotten a headache from some infusions? [BIG TIME] And it turned out to be a poorly prepared batch of IG.
IF you know what brand was or should be given to you? Be ABSOLUTELY SURE That brand IS given to you. Substitutions aren't as easily allowed by FDA laws regarding 'blood products' [which this is?] and they are VERY specific that substitutions aren't acceptable ...unless certain procedures are followed. Since no one knows that? It's often abused. There is a lot to learn? Ask questions? Learn what to ask and how to complain.
Those headaches are definite BAD things! I can't find a good word to describe them other than 'blinding' and 'awful'. These are NOT adequate words! Ask away ask a many year veteran and I'll plug you into others too. I'm not shy. Hugs etc. 's - j