IVIG rash, what do YOU do ?

[quote=ConnorZmom]I need to ask for those few that do get the rash after IVIG, what do you do for it ?????????????

I have it pretty bad this time. I usually get it about 7 days after infusion. This time I got it the next day and still have it. It’s been almost 3 weeks now and I’m ready to get another dose soon. I have it on one leg on the shin…all down my spine and now coming across my shoulders onto my chest.

It’s only getting worse. I’ve tried the benedryl and a prescription steroid ointment…(dont have it with me so dont know the name).

I cant wear certain clothes b/c it’s ugly. I wondered about going to tan to see if that would dry them out or whatever but worried they’ll spread more.

I do tan a few times per month just to feel good. Nothing overbearing and I know the rash is not from a tanning bed. It’s my typical IVIG rash that just wont go away this time.

UGH !

Stacey[/quote]

Hi Stacey,

Have you tried Solumedrol immediately prior to your infusion? Unless I’m premedicated with 125 mg of Solumedrol, I get the rash and hives. In my case, both appear during the infusion.

Also that it mite not hurt to post-med too.
I use clobetasol and protopic [topical steroids] -the stronger one first for a few days w/the lesser one for five+/- days after that as a precaution. Those blisters are nasty! And itch worse than heck! Reminds me of poison ivy or worse, truly something to forget for sure.
Neuro was useless in this ‘reaction’ [never heard of such a thing], but got fit in with my dermatologist the second time of infusions that I’d had them… Didn’t blink an eye, said it was common [this derm has done HOMEWORK about my CIDP-yeah?] and is alert and sensitive about topical reactions to anything that’s prescribed.
Knowing which brand you get, look up the ‘prescribing information’ and look not only at the common side effects, but the ‘less common’ ones. Use that 800 number to it’s fullest-but be prepared to wait a bit on hold and then about 15-30 minutes of Q&A about you before anything useful is said to you about it. It could be the ‘batch’ and they will be checking that out totally!
Gosh, I’m getting itchy just thinking about it! Hope this helps.

does the Solumedrol help just the rash are does it also help the headaches??

Stacey,

What is it? Do you know? I wound up having a few spots that I believe are topic dermatitis. I have had dry skin, but never dermatitis, MY daughter has had it since a baby, so I know what it looks like. If thats what it is. prescription topical steroids. avoid hot water, harsh soap, scented laundry detergent etc. space out the bathing as much as possible, keep it short and low water temp. the hot water pulls the moisture out of your skin. It is weird I got a few spots popped up the exact same area on both arms same size etc. It has gotta be from the condition somehow. Easier to keep away than it is to go away. Summer and humidity helps sometimes.