Reply To: New here. Recently diagnosed with CIDP; getting IVIG.
sorry to hear you have to join the club!!! I have had aseptic meningitis with IVIG (two times pretty badly, third time mildly).. I was in the hospital inpatient when I crashed, and they gave me IVIG for the first time.. they ran it at a rate or 210.. the 2nd night of the loading dose I awoke from my benadryl coma with a Pounding headache.. temp of 103, and walking on the floor hurt my spine so badly.. I coudlnt’ turn my neck at all.. I felt like I had the flu x 10! now, I didnt’ say anything to the docs, as I needed the IVIG and didn’t want them to stop it! I got IV toradol and zofran and just was miserable, but hopeful about the IVIG working.. they were doing a lumbar puncture for diagnostic purposes of my weakness and then came in and told me I had meningitis (ha.. I knew that, but now they did too- it was confirmed, I had 100’s of Wbc’s in my csf).. anyhow..
point being – I have learned that my rate is crucial, I can’t go over 100ml/hr.. I drink tons of water.. and I’m fine now.. my body has since adapted (i couldn’t go over a rate of 70 for months).. good news is the 2nd round of IVIG I felt almost normal, it seemed to “cure” me.. but since it seems less effective, though still works..
good luck! keep us updated!