IVIG and hypogammaglobulinemia: What? How?? Help!

November 26, 2019 9:58 AM

I've always gotten sick...a lot. Then this summer I developed a fever of unknown origin and in the process of crossing out scarier things the doctors uncovered that my IGG levels are extremely low. In mid December I'm due to start IVIG infusions. Please assume that I'm receiving excellent medical care, but I still have questions...

The immunologist says that she is sure that I require treatment. She strongly believes I will likely feel significantly better after two rounds and that I will likely have to do this for the rest of my life. She seems very confident but she is also a woman of few words and I would really appreciate more anecdata as I try to wrap my head around all this.

* If you've experienced IVIG personally or know someone who receives it what side effects, if any, have you experienced? Did you get them every time or just with your first infusion? Have anything helped mitigate it?

* How quickly did the infusions work and how dramatic was the difference for you? (I know that this is likely different if you are receiving it in tandem with chemo or for autoimmune illness but I'd still love to hear your thoughts.)

* Is there anything you wish you'd known about this process before you started?

* And this one is a bit odd-- but if you are a person who has been chronically ill and then were...not. How easy/hard was it to wrap you head around that change?

posted by jeszac to Health & Fitness (3 answers total)

Best answer: I am a doctor, I am not your doctor, but as a caveat to any further responses you receive in this thread from people who have received IVIG themselves (I have not): IVIG is given in different ways for different indications. Importantly, when people have a relative immunoglobulin deficiency, IVIG is given at a fairly low dose in order to replace what's missing. When people have a dysfunctional immune system wreaking havoc in their bodies, high dose IVIG can be given to suppress it.

People can have all kinds of reactions to all kinds of doses and they tend to be fairly idiosyncratic person to person, but generally speaking someone receiving low dose therapy for immunoglobulin deficiency is less likely to have adverse reactions than someone receiving high dose therapy. I would keep that in mind as you collect anecdotal experience here or elsewhere.
posted by telegraph at 11:49 AM on November 26, 2019

I received IVIG infusions for 3 days of a planned 5 days for suspected multiple sclerosis. My symptoms got worse instead of better, so I was switched to IV steriods. I didn't have any side effects from the IVIG (except, I thought, temporary darkening of my aereolas. My neurologist was quite embarrassed by this observation and in retrospect, I suspect it was a coincidence)
posted by i_am_a_fiesta at 12:22 PM on November 26, 2019

Best answer: I had a set of IVIG infusions recently; as said, there are a number of reasons people get it, so in my case I didn't feel any differently, nor would I have expected to.

In my case, they hit me with the Tylenol and Benadryl every time, and for me the Benadryl really hit hard; my main effect was getting very sleepy for a few hours, pretty well the entire time they ran the IVIG. I'd prepare for that with entertainment that can stand up to dozing off halfway through; I listened to the podcast Song Exploder because I was too tired to keep my eyes open, and a more narrative podcast (eg This American Life) would have required too much focus.

I'd bring a scarf or something to wrap your IV arm with, it can get cold running all that liquid in it.
posted by Homeboy Trouble at 10:20 AM on November 27, 2019