Ivig
 

Hello everyone,
I thought this might be a good place to ask this question.
I have hypothyroid and Small fiber neuropathy.
I have been getting IVIG for about 1 1/2 years.
Every time I recieve a treatment I feel like there is a war going on in my body. My pain gets worse for about 4 days.
Does anyone else get IVIG and if so does this happen to you?
Thanks for reading and any answers you can provide!
Hopeful

I have two docs hinting about IVIG for me in the future...I'm apprehensive. I have low platelets and that is the main reason. I have issues with lupus and other autoimmune problems.

What is the main reason you get your tx?

That sounds awful that your pain worsens, even if it is temporary. I'm starting to look around on line and all I've heard about this tx is that it's very important to hydrate fully before receiving IVIG and that it is less likely to cause a headache if it is done slowly.

However, one woman said that she has to take a small amount of a steroid before tx to prevent aches and pains.

What has your doctor said about this? Is there anything that can be done to help?

I hope folks out there with experience about this will post!!!

Thanks for your answer. Please don't be afraid to try it. It does help my neuropathy after the few days of pain and nausea.
I do hydrate and they give me fluids before and after the Rx. I did use to get steroids with it but developed high b/p so we stopped those. I'm ok without them anyway.

I start hydrating the night before & drink so much during the infusion that I have to be disconnected 3-4 times to go pee. Before I leave the house to go to the infusion center they have me take a Benadryl and two extra-strength Tylenol. Recently I've started adding packets of Propel or other electrolyte powder to the water I take with me. The only time I forgot my regimen I got The Headache but it only lasted a couple of days.


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I forgot to add: yes they run mine about as slowly as possible. Takes around 5 hours. They have very comfortable recliners and by now I mostly nap.


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You can have your infusion at home. I'm an RN and have administered IVIG in the home setting for over a decade. But...I'm on disability now...I have Myasthenia Gravis...and I'm getting IVIG at home! It is so weird that I've treated so many patients with IVIG at home and now I am getting it. I am a cancer survivor and post Stem Cell TP. I've only had my first two days of "loading". 100GM each day. I didn't have a headache; but had stomach issues. That may have been starting before the infusion. My next one is 10/27. I've seen it do so much for people so I'm praying it will help me.