[Needananswer]

Has anyone had hives from IVIG? I had 2 small hives show up on palm of my hand about 24 hrs after my first infusion. When I went for next infusion (48 hrs after my first) they were still there but nothing major.

When they dialed up the infusion rate (only from 25 to 50) they got bigger and meaner looking so they called my dr who instructed nurse to stop. I'm frustrated and disappointed. Did they have to stop?

They are fully gone today

Anyone experience anything similar?

Thx!

[bny806]

SO sorry to hear that!! I didn't get hives per se, but I did get a rash on my palms (worst with my first infusions)... They were more like tiny blisters all on my palms.... I got an eczema like rash on my legs too.. I wanted to claw my legs off.. Do you premedicate with benadryl and tylenol?

[Needananswer]

Thank u bny. I'm frustrated and super disappointed but seeing dr tmro to fig out next step. Thank u for letting me know what happened w u!

Have a good day

[Needananswer]

PS yes w 50mg Benadryl and 2 Tylenol. I also had kidney pain afterward so this has them concerned. I just want a fix. I'm desperate!!!

[AnnieB3]

What brand of IVIG did you have? Did they even consider a different one? Did they check your kidney function WHILE you had kidney pain? Could that be from not drinking enough water before, during, and after?

If you didn't have your kidney function tested, you might want to talk to your primary doctor about that.

Someone I know had hives from Rituximab, but they did not stop the treatment. She ended up being okay.

Could it be that doctors are so afraid of lawsuits from hurting people that they are now getting really worried about the smallest issue? Not that hives are a small issue! I'm only asking the question.

I'm sure that you are really frustrated! The treatment options for MG suck. And you take risks with every one of them.

Are there any IVIG vets who can chime in on the different brands of IVIG? I haven't had it, so I can't comment on that.

I'm sorry things are not working out as you had planned. I hope you and your docs can figure something out.


Annie

[bny806]

The brand seemed to make a difference for me.. i want to say I was on Cariummune or something like that initially.. had the rash, meningitis etc.. we swtiched to Gammunex (they say it's a "cleaner" IVIG), and people tend to have less reaction to it.... sometimes insurance makes you "fail" other brands of IVIG before approving Gammunex, as it is more expensive than a lot of other brands..

How are you doing?

[bny806]

The brand seemed to make a difference for me.. i want to say I was on Cariummune or something like that initially.. had the rash, meningitis etc.. we swtiched to Gammunex (they say it's a "cleaner" IVIG), and people tend to have less reaction to it.... sometimes insurance makes you "fail" other brands of IVIG before approving Gammunex, as it is more expensive than a lot of other brands..

How are you doing?