I have had SCLS for over 10 years (I signed up on rareshare back then, and entered my profile), and have spent those years mostly maintaining a chronic leak with diuretics. I would have an episode every 18 months or so where I would get up (dehydrated) in the morning, pass out, and go to the ER for 2 or 3 liters of fluid and then take lasix to bring the fluid back down. I was pretty much in a constant state of puffiness.
This February, I was in the ICU for 6 days because I had a very different kind of episode. Luckily, the Intensivist on duty listened and investigated, and after about 10 liters of saline, put in a central venous line and administered Levophed, and then lasix. It took me 2 months to feel like myself again, and we drove to Mayo Clinic in MN for a consult (I went 10 years ago). It was recommended that I begin IVIG 2 g/kg given every 4 weeks.
When I returned to Maine, I had my first treatment over 6 hours, came home sleepy and with slight headache. Woke up feeling ok the next morning, but diarrhea all day and into Sunday, which was when I also had a migraine and was panicked about becoming dehydrated. I went into the ER for 1 liter fluid and a 'migraine cocktail', came home & slept it off. For the following 8 days, I had intermittent headaches/migraines and diarrhea. With the shortage of IVIG, no one was calling to set up another appointment, and I was ok with that. I did realize, after about 6 weeks, that I had not needed to take any diuretics in this time. My muscles were also tender most of the time, and that is gone. I have pretty much stopped eating white flour (I would notice my muscles more sensitive after it, and the February episode happened after an overload - and - they may have absolutely NOTHING to do with each other). My husband keeps telling me I look 'so healthy!' because I've had a consistent look for these 9 weeks now.
We are hesitant to get on a schedule with the IVIG. I asked my Mayo doctor about waiting until I start retaining fluids again, and he would prefer going to 6 or 8 weeks, not wait to treat symptoms - which I completely understand. It sounds like my reaction to the IVIG was unusual. What are others' experiences with IVIG? Any other 'chronic' leakers?
I am so glad to be able to put this out to people who have had similar experiences - thank you for any input!!