Reaction to IVIG - chemical meningitis

Ellen (wife) is having reaction to yesterday's initial treatment with IVIG. First contacted neurologist (she also has migraines) because of unusual headache, vomiting, chills. Dr saw her briefly and said chemical meningitis and sent her to ER, where we wait to be seen.

Anyone have this reaction before? What to expect, how long to resolve, etc.?
Will this rule out future IVIG?

Rob:

Aseptic meningitis is a common side effect of IVIG. It resolves within a few days, and all you can do is manage symptoms in the meantime.

Sometimes it can be avoided by using a slower drip, using pre-meds (steroids and Benedryl), and keeping hydrated before and during the infusion.

www.pdsa.org/treatments/conventional/immunoglobulins.html?layout=item

I'm sorry that happened to your wife! I know from the 4 times I have had IVIG's, 3 times I had no side effects and the last time I had a really bad headache and felt nauseous for 3 days. I took Tylenol and Benadryl each time. However, nothing like what happened to your wife. I don't think it rules out IVIGs for her, but they may need to slow down the treatment. Has she tried any other treatments? She may have less side effects with other treatments such as a TPO or rituxan.

My counts temporarily increased the 1st 3 times, but not the 4th. The hematologist said that you can stop responding to it over time. I decided I really don't want to try it again unless absolutely necessary( like if I need surgery or dental work).

Update on Ellen:

CT scan negative. She fell asleep halfway thru lumbar puncture (Yay Ativan!) As sister says, "Say YES to drugs!"
Spinal fluid clear but pressure elevated.
Probably chemical meningitis (from IVIG), maybe viral, probably not bacterial but IV antibiotics anyway.
Anyway, crisis over. Now comes the hard part.

Any idiot can face a crisis, it's day to day living that wears you out. - Anton Chekhov.

Still learning about alternative treatments. Hoping we won't be getting into a splenectomy battle with hematologist. But that's for another day!

Glad she is doing better! No spleen battle today. There are many options to consider!

After 4 days in hospital on 2 IV antibiotics plus IV Acyclovir, the Drs. finally decided it was safe to send Ellen home. They were especially cautious b/c of Ellen's work in an infectious disease clinic combined with two recent rounds of high dose dexamethasone suppressing her immunity.

I found a very readable article on when and how to rechallenge with IVIG after having had a chemical meningitis reaction to IVIG:
www.pharmacypracticenews.com/PrintArticle.aspx?A_Id=13332&D_Id=401&D=IVIG+FAQs
Printed a copy to take to the hematologist on Monday.

Interesting trivia (but not so trivial to Ellen): migraine is a risk factor for having a chemical meningitis reaction to IVIG. I did a bunch of googling, and found other references to the phenomenon, but no explanation of why. Ellen is a frequent migraine sufferer.

Twelve days post-IVIG and Ellen's platelets are up to 290K!

So, is it the IVIG? The chemical meningitis?
The two types of IV antibiotic? The Acyclovir?
Some combination of the above? Will we ever know?

Is it time to be cautiously optimistic?
Or, enjoy it while it lasts?

Enjoy it while it lasts. IVIG usually does not last long, so be happy now! After going through all of that, could you possibly consider a different treatment next time?

Ugh! Not the answer I wanted, but thanks for the truth.

Would she try something different? Depends on how long the IVIG effect lasts. There are ways to lessen the likelihood and severity of chemical meningitis, and no one has ever died from it, so I think IVIG is still the safest choice, isn't it? Also, the hematologist said this is the first case of chemical meningitis she has ever seen. You would think that the 600 million dollar lottery ticket Ellen bought would have paid off!

Rob, so many people here have had aseptic Meningitis from IVIG. It's pretty common I'd say. Most do not treat regularly with IVIG because it is so time consuming and doesn't last. In time, some become refractory to it. It's just a band-aid.

IVIG is good for getting counts up for a surgery or emergency situation, but not a good long-term solution. As you said though, see how long it lasts and go from there.

Spot on to what Sandi said. My last round of IVIG left me as sick as a dog for about a week. I only get IVIG when I'm below 10k. When I get it, I drink water CONSTANTLY and just try to sleep as much as possible. It's not fun, but it gets you through it.

Those are the exact symptoms I get from IVIG. Hope she feels better soon I know how she feels.

littlejenj - Like you said, I think she'll be saving the IVIG for when she REALLY needs it.

Julia - Thanks, she's feeling back to normal. Platelets in steady decline every week, from 290 to 107, and counting. Thinking about the next step, and wondering how low to let them go before treating.

Sandi - You were right. We are enjoying it while it lasts!

Rob,

I hope Ellen stabilizes soon! I had IVIG and had a very mild 3 day headache. My counts were pretty good for me for about 8 weeks then back to 30's and 40's. I am doing nothing right now. Stable is good! Keep the faith and tell Ellen that we all are hopeful for her!

Jeffrey