Question on side effects

Got out of the hospital Thursday, ever since I feel
Horrible sounds like wind in both my ears my neck hurts to even move, pain in ears and face. It's almost been a week I know I have had side effects like this but no where this bad. I got 3 doses of ivig 36 grams and 2 doses of nplate totaling 500mg. I am miserable went into the hospital at 2, went to the dr yesterday platelets were 259 so obviously they over did it. Has anyone ever had this happen?

Two days in a row of ivig gave me a massive headache and very stiff neck. Used tylenol and script migraine meds. Doc made me get head ct just in case. Neg scan results but I am homebound as if on house arrest. No trips except in for blood draws.

It's rough can't wait for it to get better

Hi Keli - you really should put your posts down in the Adults with ITP section - this one about IVIg in the Treatment - General section of Adults with ITP. More people will see it there than up here in the Forum Information section.

I'm so sorry you are having trouble and hope that the side effects are wearing off now and will be gone soon. I know nothing about IVIg other than what I've read here and that my niece was using it for CVID.

Repost your question in the Treatment-General section and hopefully someone will see it there. Or ask a moderator to move this thread.

Thinking of you!

Hi Keli,

Neck pain is typical of a common response to IVIG, with a scary name: aseptic meningitis. It is different from regular meningitis because there is no infection involved, just a reaction to the IVIG. Sometimes it is called chemical meningitis. The meninges are the lining that surrounds the brain and spinal cord. Sometimes IVIG causes an immunoallergic reaction which inflames the meninges, causing headache and neck pain, just as if you had viral meningitis.

When my wife had this reaction she was sent to the ER and admitted for four days for observation and treatment with IV antibiotics... a major case of defensive medical treatment! She also had severe chills and nausea. She, too, suffers migraines, but this was a totally different kind of pain.

Meningitis can also cause tinnitus - including a wooshing sound. This symptom concerns me, as one can suffer complete hearing loss from infectious meningitis (as happened to my cousin's wife), although I have not found in the literature where aseptic meningitis had this effect.

Still, I would get it checked out if it has not improved.

I saw this when I was googling and the aseptic meningitis fits with the neck and ear pain but I don't have stomach pain or chills or anything like that. If I take 2 Tylenol
And 2 aleve it helps the pain for a couple hours I'm really hoping it goes away soon I hate the hospital with w passion

Maybe you're sick? Lots of germs at the hospital.

I wish it was just being sick. It's getting a little better everyday one thing I've learned from this is I will never allow this much ivig and nplate and steroids again I don't care if my dr gets mad. He gets mad at me a lot but he doesn't understand I've had this for 13 years I know my body and what it can handle and this for sure is not it

Then it could be aseptic meningitis. It doesn't always cause chills and stomach pain. Most people just get the headache and stiff neck.

I've read it goes away on its own in 7-10 days so fingers crossed

It took a lot of googling, but I found that drug-induced aseptic meningitis^* can cause tinnitus and hearing loss, though this is rare.

Is your tinnitus improving?

^*The correct terminology for the reaction to IVIG is 'drug-induced aseptic meningitis' or sometimes 'chemical meningitis'. The term 'aseptic meningitis' only means that it is not bacterial, and includes viral meningitis. NSAIDs like ibuprofen are the most common cause of drug-induced aseptic meningitis.

www.ncbi.nlm.nih.gov/pubmed/9818533
Sensorineural hearing loss caused by NSAID-induced aseptic meningitis.
"Otolaryngologists are well aware of the otologic sequelae in patients with meningitis. However, NSAIDs need to be considered as possible causal agents in the evaluation of meningitis with otologic symptoms."

I should add that I did not find any cases where IVIG caused tinnitus or hearing loss. However, Kawasaki disease is routinely treated with IVIG, with many cases of hearing loss, though none attributed to IVIG. I wonder if nobody has connected the dots?

Sorry I should have added that I've had tinnitus for years I know this will sound crazy but it has usually been my indicator my platelets are over 100 lol everyone looks at me like I'm crazy when I say that. Maybe the ivig maybe the nplate may just be that I have tinnitus sometimes I really have no idea. If I press down on my neck it stops and when I release its still going. I've complained about it to my Drs for years just because it's extremely annoying but if it's not about Itp no one really cares.

Maybe you should see an ENT. He might care. I have the same problem with doctors. They blow everything off and blame it on Lupus without bothering to look into it.

Just got home from the Drs platelets are 301 I hate when my dr goes overboard wish they knew they didn't think they knew it all. I hate when I'm this high I had a stroke in 05 due to this same reason so I'm really hoping history won't repeat itself

I hope all goes well too, Keli. Keep us updated.