Once I got out of the hospital (3 months time), I was always given my IVIG in one day, but it was once a week. I don’t remeber the dosage but I only weighed 136# at that time, wish I still did (darn steroids.) Anyways, I am glad to see your doctor is on top of things & not making you wait. Sorry you are going downhill, hopefully the booster IVIG will bring you right back up.
Never apologize for your posts, many of us “old-timers” come here mainly to look for new posts to help other out who are newer to CIDP!
When I first was given IVIg back in 2004, the neurologist at that time thought I was to be given 80 grams but never followed up on the doctors office who was giving the infusion who set it at 40. Then there was the shortage of the IVIg in February 2005 where I could not get it and almost was done in because I finally could not breath. But then in the emergency room they gave me my 40 grams and I came back to “as good as it gets”.
With all of this and my new Neurologist I asked him about the 80 grams and he never really did give me an answer. The hospital say they are loosing $10 a gram but continue to give me the 40 grams.
Now with all of that I too wonder if getting more would help as I really feel like I am on a rolling coaster ride between dosages…and like some other here have found that for two days following my infusion my fatigue and weakness actually increase after a short immediate spike the day of the infusion. Then after two days I begin to climb up to the state of “better” defined as “as good as it gets”.
So bottom line…after your question…I am going to give my request to try 60 grams to my Neurologist and see what happens. Maybe I could feel a little better and not loose my ability to talk and breath at the same time in between infusions.
Thanks millions for bringing this back to my sort of conscience mind…what ever is left of it…. ha.