I need some advice from those who are experienced with this.

For those of you who know me, I'll refresh: My onset of full body polyneuropathy was in 2014 after about a year of dysautonomia, the painful neuropathy spread through my body with in 2 months. I was debilitated for 6 months with slow almost imperceptible improvement in which I regained some function, but life was difficult. 2016-17 had me at a stable but chronic condition which was manageable with the meds I have as needed to take when the pain and spasms are unbearable. Well... last month things started getting bad again. I started having symptoms reminiscent of my onset and have been having terrible excruciating pain.
My doctor decided for once and for all to try to be proactive about this and put me on 1000 mg infusion yesterday wanting to repeat this tomorrow and friday. His hopes is that it will knock this down and get me at least to my manageable chronic pain state.
So this is whats going on:
The infusion was at 4pm yesterday. I prepared by taking a zantac to protect my stomach as I can abolutely not tolerate oral prednisone so never got to take in for more that 3 days to see if it would have an effect on my condition.
I was slightly wired and had a headache after the infusion. By 11 pm, I took my pain pill to at least quiet that down. 3 am I woke up with bad nausea and severe sacrum pain. I ate something and then feel asleep from 6-6:30 am and had to get the kids to school with excruciating back pain and a headache. I was told that I might be racy, have stomach stuff, feel shaky... but that I should have an improvement in my pain levels even as soon as last night. What is up with the crazy back pain? Now I am really worried to take the next infusion.

Report to your medical team what you are experiencing. You didn't die, and if more infusions are on order, go for them.

Let us know what happens. Worry is useless (however human), and debilitating in itself.

Regards, ElaineD

Hi health girl. Sorry to hear things are not better. I had the same infusion over 5 days. It didn't help my sfn but it appears mine is genetic so is why it didn't work .it actually made my sfn worse and I felt really depressed and down for about a week after. It should hopefully help yours as yours sounds like autoimmune. Give it a chance and see how it goes.Loulou

I'm not sure whats going to happen. My last infusion was two days ago. Ive slept very poorly due the steroids having wired me up. My skin is sore all over now. I can't say yet what will happen. It sure didn't fix me though. Do you remember what you felt like during and after the infusions? I did have a weird energy for a few days and stomach upset, but handled it ok. I'm starting to feel a little run down now though and just had some foul nerve pain shoots in my back.

Hi heathgirl. I do remember feeling like I had more energy and also found nerve pain worse. Neuro said if it was going to work i would have felt better as it was a huge amount of steroids and reminded me it is sometimes what they give to people who have an ms relapse. Can you try and get a trial of ivig passed?