Re: IVIG Reactions? Aseptic Meningitits

[Guest guest]

,

I'm sorry it's taken so long to get back to you -- wanted to write a

real response and not just throw together something in 5 min, and got

slammed with schoolwork and clinical responsibilities this week that

have kept me away from the computer more than usual.

It does sound like could be having reactions to the IVIG... it's

always hard to know if it's definitely aseptic meningitis (without a

spinal tap), or if it's definitely related to the IVIG, but it certainly

sounds like the timing and symptoms are consistent with it.

As my doctors told me, there's no way to know why some people seem to

get these and some don't, but it does appear that some people are sort

of predisposed to get them, and others aren't.... once you have had one,

it probably means there's a decent chance you'll get them again, but

there's no certainty that it will happen every month, or just every once

in a while (or never again).

The leg pains complains about aren't a prominent feature of

aseptic meningitis, but IVIG can certainly cause muscle and joint pain.

I wrote in my message what my docs have recommended that I try, to

hopefully prevent these reactions, since I've now had three in a row

(and can't take any other IVIG brands). We think the key part of the

pre-meds will be starting the steroids well in advance of the infusion

-- steroids take 6-8 hours to start working, so taking it 30 minutes

before the infusion won't prevent anything that happens during the

course of the infusion. Even though the symptoms often don't arise for

48 hours, it may be a matter of preventing whatever takes place during

the infusion by starting the steroids earlier. I will certainly let you

know if it works this month.

For me, the protocol is three doses of oral steroids, 13, 6, and 1 hour

before IVIG, plus IV Benadryl before and during the infusion, plus an H2

blocker (Zantac, Axid, or Tagamet) before the infusion. Also, two extra

strength Tylenol before the infusion. I don't take Advil on top of it

because I already take Vioxx every day anyway, and the Advil isn't

really going to do anything that the steroids and Vioxx will do (they

all target inflammation). My doctor said that if you wait until the

symptoms begin before starting the anti-inflammatories (or don't take

them long enough before the infusion to prevent the inflammation from

starting in the first place), the only things that really make a

difference after the symptoms are narcotics, and perhaps some OTC pain

meds (Tylenol, etc). Fluids are not proven to help (mostly just because

people haven't studied them), so he said they won't hurt, but who knows

if they'll do anything. Because I have a port, it's easy for me to run

extra fluids, so we'll do that. Pushing them orally may help, too, in

's case.

I'd talk to your doc and see if he has any suggestions for you guys...

it does sound like you could be dealing with an IVIG reaction of some

sort, and it would certainly be good to avoid those few days of pain, if

possible.

Hope that helps!

Take care,