!!! DISCUSSION GROUP RULES !!!

1. You must be a registered website user in order to post and comment. Guests may read only.
2. Be kind and helpful, not rude and cynical.
3. Don't advertise or promote anything. You will be banned from the group.
4. Report problems to the moderators. THANK YOU!

IViG and BACTERIAL Meningitis

More
12 years 10 months ago - 12 years 10 months ago #31339 by dismantled
IViG and BACTERIAL Meningitis was created by dismantled
Does anyone know anything about the potential for IViG to cause bacterial meningitis? I know it can cause aseptic meningitis.

Backstory: I was scheduled for hip surgery in late December. I got my pre-op labs done, and was shocked to find out that, after 3.5 years of remission, the ITP had returned. My counts were far from critical, 70k, but too low to have surgery. I called my hematologist, and she scheduled me for IViG. I was given a heads up that IViG can cause headaches, and my nurse told me that if I developed a headache, I should drink plenty of water. I had the IViG on a Friday, with my surgery scheduled for the following Wednesday (December 26th). I tolerated the IViG just fine during the infusion. Saturday morning, the day after the infusion, I woke up with quite literally the worst headache I have ever experienced. I once had a status migraine for 7 long weeks, and I would repeat those 7 weeks ANY day over having the headache I woke up with. I stumbled downstairs from my room, gasped to my mom that my head was killing me, and went to get some water. I drank a bit, and then threw it up. I told my mom something had to be wrong, there was n way the nurse was talking about such a severe headache. She told me to drink more water. I did. Threw it back up. After throwing up the third time, I told my mom we had to go to the ER. I did NOT expect the news I would get later, but thought that at a minimum, I needed IV fluids and an anti-emetic, and possibly IV pain medication. My mom, being her typical self, grumbled that they would never see me in the ER, I would sit in triage forever, blah blah blah (the same things she told me when I had a heart condition that sent me into arrhythmias of over 250-280 BPM that had the potential to progress into v-fib and death :pinch: ). She finally agreed to take me to our local hospital, which is luckily one of the best in the United States. They saw me immediately.

After a CT scan and maybe some other tests I don't remember (they gave me 6 mg of IV morphine off the bat, which didn't make the slightest impact on my pain, pushed 6 more of morphine, then finally switched to a high dose of IV Dillaudid--and I'm only 120 lbs...), they performed a lumbar puncture. It came back positive for meningitis, but the strange part is, it wasn't aseptic, it was bacterial, or so the doctors insist. I spent a week in the hospital on IV antibiotics. Apparently my spinal fluid cultures never grew anything, but they said something about the composition of the fluid and some of my blood counts pointed, as well as the fact that I responded to the antibiotics and not just to fluids, all indicated that the meningitis was indeed bacterial and not aseptic.

So, back to my original question. Has anyone read, heard, experienced, have ANY information at all linking IViG to BACTERIAL meningitis? I suppose it's possibly I contracted bacterial meningitis prior to having the IViG (it can have an incubation period of a number of days, depending on what bacteria caused it), or that the doctors were covering their rears by diagnosing me with bacterial meningitis despite the negative culture, ensuring insurance would pay for the (very expensive) IV antibiotics, and in reality I had aseptic meningitis. I don't know. I know I will NEVER do IViG again, because if this whole ordeal WAS simply aseptic meningitis, I still have absolutely NO interest in experiencing that pain again, but I hate unsolved mysteries!

Thanks in advance for any insight!

Please Log in or Create an account to join the conversation.

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
More
12 years 10 months ago #31359 by Sandi
Replied by Sandi on topic IViG and BACTERIAL Meningitis
I don't know. I couldn't come up with any info on bacterial meningitis and IVIG. Not to say it isn't possible, but it would be rare. Acquiring it that fast and recovering that fast too seems odd, and more in line with aseptic meningitis.

I think your Mom needs a crash course on signs of a medical emergency. Severe headache with vomiting is serious.
The following user(s) said Thank You: dismantled

Please Log in or Create an account to join the conversation.

More
12 years 10 months ago #31364 by dismantled
Replied by dismantled on topic IViG and BACTERIAL Meningitis
You're certainly right about acquiring it so quickly. If it was indeed bacterial, which I guess I'll never definitively know, I must have been exposed elsewhere a few days before having the IViG. I hadn't thought of that. The recovery was more or less in the ballpark for bacterial meningitis. I received 7 days of IV antibiotics in the hospital, which, now that I've done a bit more research, would have been sufficient for some forms of bacterial meningitis, but possibly insufficient treatment for other forms.

Like I said, I'll never know if it was aseptic or bacterial (white blood cell counts, neutrophils, and some other labs as well as the composition or something of my cerebral spinal fluid all said bacterial). All I do know is I will NEVER have IViG again. If it was aseptic meningitis caused by the IViG, I believe I would be likely to get it again, and I have absolutely no interest in reliving the pain and neurological symptoms (double vision, left side of my body became weak and face drooped, but luckily apart from some vision changes, there have been no permanent effects).

And yes, my mom could certainly use a crash course in emergency medicine, or just a crash course in taking her daughter seriously. I could go on and on about the times she's dismissed what turned out to be potentially lethal or at least very serious medical concerns, but I'll save it :P

Please Log in or Create an account to join the conversation.

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
More
12 years 10 months ago - 12 years 10 months ago #31367 by Sandi
Replied by Sandi on topic IViG and BACTERIAL Meningitis
Well, if it comes down to it, you could always call an ambulance for yourself. Wave at Mom as you go out the door! ;)

Please Log in or Create an account to join the conversation.

You’re not alone. We have answers! Contact PDSA to connect with life altering information, resources and referrals. 440.746.9003 (877.528.3538 toll-free) or PDSA@PDSA.org.

Platelet Disorder Support Association

Platelet Disorder Support Association
8751 Brecksville Road Suite 150
Cleveland, OH 44141
440.746.9003  |  pdsa@pdsa.org
The Platelet Disorder Support Association is a 501(c)3 organization and donations are tax deductible to the fullest extent allowed by law.

IMPORTANT!

The Platelet Disorder Support Association does not provide medical advice or endorse any medication, vitamins or herbs. The information contained herein is not intended nor implied to be a substitute for professional medical advice and is provided for educational purposes only. Always seek the advice of your physician or other qualified healthcare provider before starting any new treatment, discontinuing an existing treatment and to discuss any questions you may have regarding your unique medical condition.