Reply To: New here. Recently diagnosed with CIDP; getting IVIG.

May 22, 2013 at 1:40 am

Thanks GH. I should point out that the only self-diagnosis I did was declaring my excruciating neck/headache (48 hours +) to likely be aseptic meningitis. There was no fever, and after it peaked (about 18 hours in) in started getting better. Had I gotten a fever or deteriorated I would have gone to the ER for sure. Anyway, “self-diagnosis” is probably an overstatement, as its only purpose is to put a label on it. I’ll definitely tell them about when I go in for my next infusion.

I’ve heard other say the initial loading dose is five days too. Others have said three. In my case the symptoms are not that bad, plus there’s the steroid dose, so maybe that’s the standard here for someone in my situation.

Glad to hear you’re in remission! I don’t now if PE is an option for me. This is all very new to me, but you can be sure I’ll be asking more questions next time I’m at the clinic!