During the time rareshare was offline, I was finally able to get insurance approval for IVIG treatments.  I started my first dose in early October (1g/kg ideal body weight) and just received dose #3 less than a week ago.

First, only a minor reaction to the IVIG. I felt slightly fatigued a few hours after the infusion (similar to after getting a vaccination). It was barely noticiable after dose #3. The infusion takes about 4.5 hours each time.

I suppose the real test will be not having any hospitalizations over the next few years, but I have to say overall I feel 10x better than I have been the last couple of years.  I'm able to exercise more without feeling sick/tired the next couple of days, I feel like I've gained more flexibility in everyday movements and activities. I definitely have more energy and have done more projects around the house. I lost about 10 pounds within 3 weeks of the first dose (it's leveled off since then).  Overall I've very happy with the progress.

Kevin,

So happy for you!

You might want to read up prior conversations on infusion administration speeds and side effects from IVIG in the following: https://rareshare.org/topics/1985, https://rareshare.org/topics/1964, https://rareshare.org/topics/1341, and https://rareshare.org/topics/1282. 

To make a long story short, it's absolutely normal to feel fatigued a few hours after the infusion or even to get a headache a day or two following the infusion, which usually goes away with Tylenol or an equivalent over-the-counter medication.

Moreover, infusion speeds are highly variable, and if you tolerate the infusion well, you can ask your nurse -- or if he/she won't do it without authorization, your prescribing physician -- to speed it up so you can be out of there in a couple of hours, especially since you're only receiving 1 g/kg.