I have been on IVIG for almost 5 years. I started monthly infusions for 2 days and switched to 1 day infusions every 14 days. I would start experiencing minor aches and fatigue usually Wednesday evenings and Thursdays with infusions on Friday. My last 2 infusions I began symptoms on Monday, ended up taking Thursday off work, slept most of the day & received my infusion on Friday. I spoke with my Dr about possible dosage increase, etc & the Dr wasnt too worried about it. Has anyone else ran into this who has IVIG every 14 days ? Do I worry too much ?

I was having infusions over two days then went to I day every 14 days. Neither caused problems for me. (as described by you). I have gone back to 2 days every 4 weeks so that I can get a month free of hospital and again every thing seems fine.

HI i was having monthly infusions over 2 days , then dropped to every 3 weeks and most times i experienced exactly what you have described. I had asked my Drs to work out why this happens so often but they had no answers . Then i started losing weight and found that each time the treatment felt better, i think it may have something to do with the dosage aswell. I hope you find the answer for you ,hope this helps a little.

Hello Dawn and others, The best way to assess your dose is to measure the trough level of IgG before your infusion. At your lowest ebb, this should be above 20g/l. HOWEVER! This assumes IVIG is the whole story. It may not be so. We really need cases like yours to understand HOW IVIG works. Purely from my experience, those " down" days may be helped by intense hydration with electrolyte solution. I feel beter those days if I drink 4-5l of hydralyte sol. It may not work for you. Please let us know? Cheers John

Hi Everyone.. I am scheduled for my IVIG this Friday, so will keep you posted how the week goes. I am an AK amputee (due to my first attack in 2000) and try to keep my weight in a 5-7# range, but have been on the higher side the last few months. I'll work on getting to the bottom of my range. I have been swimming a few times a week for the last month, so I'm wondering if that may figure in to my symptoms. I will keep track of my water this week and keep you posted. Thanks ! God Bless Dawn