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Headaches and hot flashes after IVIG

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15 years 3 months ago #5363 by Christine
Headaches and hot flashes after IVIG was created by Christine
Does anyone get the bad headaches after IVIG? (I take tylenol and that eases them) I also get hot flashes that are nothing like the other ones I get at my stage of life. They are so bad I have to lie down with an ice cold face cloth on my cheeks. (On the humourous side I look like a very ripe tomato!LOL)These symptons last for about 1-2 days after the tranfusion. C :)
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15 years 3 months ago #5367 by BethF
Replied by BethF on topic Re:Headaches and hot flashes after IVIG
My son used to receive IVIG and always got a massive headache afterwards - usually 12-24 hours after the infusion. Nothing would relieve the headache expect sitting under hot water in the shower, which he would do until the hot water ran out. Generally, the headache would last another 12-18 hours and then he'd be wiped out. He never got the hot flashes, though.

It's a double-edged sword, isn't it? Hopefully the IVIG brings your counts up for a good amount of time!

Beth - mom to Brady (age 13, diagnosed 1/18/02)
Beth - mom to Brady (age 19, diagnosed 1/18/02) and Matthew (age 21)
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15 years 3 months ago #5386 by gilly
Replied by gilly on topic Re:Headaches and hot flashes after IVIG
Yes I do... always! Have been having IVIG since I was a 4year old and now Im 31. Last time it got so bad that I felt sick and had funny vision and couldn't handle looking at light. They took me for an scan and said I had aseptic meningitis. Don't think it was dangerous but very unpleasant!

Now I try to use Prednisolone short term rather than a course of IVIG.

All the best!
Gilly
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15 years 3 months ago #5389 by HSheppard
Replied by HSheppard on topic Re:Headaches and hot flashes after IVIG
I've only had one infusion of IVIG, but I did get a gross headache. Apparently aseptic menegitis is quite common after an IVIG infusion. My hemo. also told me that with subsequent infustions reactions can get worse. I felt nasty for a day or two, but my counts did stay up nicely for a while, and I've been above 20 ever since, so it was a fair trade, I think.

Blessings,
Hauna
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15 years 3 months ago #5396 by CindyL
Replied by CindyL on topic Re:Headaches and hot flashes after IVIG
Hey Christine, that's the way I usually get after my IVIG; that and the sensitivity to light and very, very red eyes! Now I get the infusion done over a longer period of time. I know a lot of you don't like the length of time it takes, but for me, the slower the better. I don't get sick like I did before. I get Tylenol; Benadryl and Solu something before treatment. I found out at my last treatment, that one of the other people who get the IVIG, get Benadryl before and after treatment. I'll take the slow dose any time over getting sick after.

Good luck.
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15 years 3 months ago #5403 by Christine
Replied by Christine on topic Re:Headaches and hot flashes after IVIG
Thanks everyone - so it is fairly "normal" Will try the slower dose next time; but will NOT go near prednisone unles I really have to. The agony of tapering and all the other problems are still in my memory. I'll ask about Benadryl tho' Christine :)
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