When I first started IVIG twelve years ago I had all those reactions, but mainly nausea and vomiting,which caused me to lose 80 pounds in about four months. I’m retired military and we have to use whichever medications the base receives so I’m not sure the brand. I’ve now receiving my infusions at the VA and I just have a couple of reactions (a little bit of nausea and feeling tired), none of which compares with my original reactions. One question I have is one I’ve never heard of anyone else having is severe pain during my infusions. The pain goes through every part of my body and stops right after I’m finished. The doctor has prescribed pain medication as a pre-med along with my Tylenol and Benadryl. I’m just curious if anyone has ever had this type of reaction to their infusion.
Perhaps a reaction to IgA, which is a very small component of all IgG solutions.
Yeah, I did with my first one, but I think it was because I didn't know I was supposed to be well hydrated prior to it. I developed acquired methemoglobinemia which made me cold, stiff, along with giving me a deep ache in my muscles along with a nasty stiff neck and headache. So for me, hydration is the key.
Thank you Sunshine. I also have Sjogrens, which makes my mouth dry all the time, so I am always drinking. I’ve been on these infusions for twelve years and they have never stopped being painful. My neurology told me it was because I have connective tissue illnesses and IVIG is a “volume expander” so everything swells. I do notice the pain stops within about an hour of finishing my treatments. I really do appreciate all the feedback y’all are giving me. It helps so much.
Sunshine said:
Yeah, I did with my first one, but I think it was because I didn’t know I was supposed to be well hydrated prior to it. I developed acquired methemoglobinemia which made me cold, stiff, along with giving me a deep ache in my muscles along with a nasty stiff neck and headache. So for me, hydration is the key.