IVIG, aseptic meningitis vs. CIDP, autoimmune autonomic neuropathy
Well, my first round of IVIG is finished. Initially, I was due for 6 treatments over the course of 3 weeks. Each dose of 1 gram/kg. After getting aseptic meningitis after the first treatment, my infusions were spread out over 6 weeks.
Aseptic meningitis. One of the worst experiences of my life. It is basically a swelling or inflammation of the lining of the brain and spinal cord. The symptoms are neck pain and stiffness and massive headache. Head pain doesn’t even suffice to describe it. It was so painful and came on so quickly. The best word to describe it is crescendo. By the time I made it to the emergency room it was so bad I couldn’t walk, I was vomiting, and I couldn’t see correctly. It felt like there was literally not enough room in my head for my brain. Dilaudid IV did not touch the pain. Eventually, the doctor gave me a cocktail that he reserves for his migraine patients: Compazine IV, Thorazine IV, and Benadryl IV given all together. Now, this combination did not knock the headache out completely, but it made it tolerable enough to be able to go home and recover. I was in bed for the next 4 days. I wouldn’t wish that on my worst enemies.
I would suggest to those who are getting IVIG the following formula to prevent aseptic meningitis:
1. 500cc NS IV prior to infusion.
2. Benadryl 50mg IV/ Demerol 50mg IV prior to infusion
3. Benadryl 50mg PO every 6 hours / Ibuprofen 600mg PO every 6 hours throughout infusion and for 48 hours post
4. 500cc NS IV post infusion.
5. Decrease rate of infusion to less than 2mg/kg/hr
6. Drink water continuously beginning 2 days prior and for 2 days after infusion
Disclaimer: You may do all of these things to prevent aseptic meningitis and still get it. Sigh.
I “only” got aseptic meningitis two times out of the six infusions.
Side effects aside, I do believe I’m seeing a small amount of progress. In all honesty, I was hoping for more of an “out of the wheelchair” experience. I was hoping I’d be back in the world, working out, working for that matter, and back to the other things I’ve come to enjoy in life. But there is still hope. There is always hope. There may be a latent effect of the treatments. I may also benefit from an increased frequency of infusions. We will see. More tests in the near future.
And so I press on.