IVIG - horrible side effects

Has anyone else experienced the horrible migraines and nausea/vomitting after 2nd day of IVIG? I was pre-treated (tylenol and benadryl) and am on prednisone also.

I told them to give it to me slow. The 1st day was ok, the 2nd day they gave it faster saying it was standard protocol and several hours later all hell broke loose. I had horrible migraines, the type that when you stand up it's like things are moving in yr brain...horrible!!! Threw up all night. That lasted a few hours, now I just have a dull headache.

Anyone have these horrible effects from IVIG?

IVIG can cause aseptic meningitis which can take a few days to resolve. It's a common side effect. Sorry you had to go through it.

www.annals.org/content/121/4/259.full

Yes - my son has received IVIG numerous times and had the severe side effects often. He doesn't use IVIG anymore (we switched him to WinRho a few years ago) but a couple things may help you if you have to get it again:
1. slow infusion. You mentioned this, but don't let them speed it up the second day. You should call/email your doctor to document your reaction, so that you'll be on record and they will stay with the slower infusion rate the next time.
2. stay hydrated. Brady would drink as much as possible at home and then would receive saline before, during and for a couple of hours after the infusion. It adds time to the process, but seemed to help. When you get home, keep drinking - even popsicles help.
3. pretreat with Tylenol, Benadryl and a steroid - they always gave Brady Solumedrol. Then, it helps to continue with the Tylenol and Benadryl throughout the treatment and for 24 hours after you get home. Brady also received Zofran (an anti-nausea drug) sometimes and we would have a prescription on hand once he was home.
4. talk to your doctor about the brand of IVIG. Late in the game, we discovered through this forum that the brand of IVIG can have an effect on your reaction/side effects. Different brands affect people various ways, but it may be worth it to get something different next time.

I hope you feel better soon! Brady would usually get the reaction about 24 hours after the infusion ended and then he would feel better 18-24 hours after than. THen, he would need to rest for a day or so - it really wiped him out. Although I never personally experienced IVIG, Brady's suffering looked unbearable at times so I feel for you. The good news is that IVIG always bumped Brady's counts up in to the 300s, so I hope you get the same great response from it!

Beth - mom to Brady (age 13, diagnosed 1/18/02) and Matthew (age 16)

I get those reactions after one day of IVIG! I talked to my hema and asked him to write an order for a slow infusion time. When I needed it after that, they weren't sure how to slow it down as it was a new product. Privigen. Yea, they do have protocol to follow, but since I've gotten them to infuse at a slower rate, I don't get as sick. I take Gravol for a couple of days after to help with the nausea. I get pre-treated with Tylenol, Benadryl and I do believe Solumedrol.

Maybe you should ask your hema to write orders for a slower infusion rate. I found it really makes a difference. Good luck.

I always got a terrible headache 2-3 days after IVIg. I'd take tylenol but no benadryl. I found that drinking a lot of water before and during the IVIg helped a bit and try to keep low key over those few days. There was once where the headache never came. For me, 3 bottles (60g) would take 5-6 hrs. I never threw up. good luck.

My teen had that type reaction the first time. We found that good hydration, before, during, and after; tylenol and benadryl, before, during, and after; and a shot of decadron at discharge helped to hold off those side effects. On one occasion, she also was given a very low dose of decadron pill to take for five days after. We appreciate that IVIG works for her as a "rescue," but we don't do it unless she needs a rescue.
Norma