October 23, 2011 at 3:02 pm

It looks like it has been awhile since anyone has said anything about subq for cidp. We went from Gammaguard to Gammunex because of terrible headaches and then started Hizentra 7 weeks ago. We were trained to give these to our 5 year old daughter for 3 weeks and then we are on our own. I will say that the infusion part goes great and seems healthier as it is not going in a vein. We love it that we do not have to go to an infusion clinic, too. Here is the hard part, she does not seem to be doing as well. During the day she seems good, except for some clingy issues that have been recent. At night, she has started to cry a lot and when we ask her what is wrong, she either says nothing or will make something up like her neck or she has to go to the bathroom. I have been thinking the worst as she also has arthritis that was caused by the same virus that caused her cidp. She is getting the ivig more for her arthritis than her cidp. Anything anyone wants to tell me would be appreciated.


June 1, 2007 at 11:13 pm

Ohio State University is going to do a study to see if it is as effective as an infusion. My Neuro has put my name in for consideration as a participant.