[Katherine Collins]

Hi Glen. My first round of IVIG was also 5 days. On the 3rd day I had the same reaction as you! Aspectic meningitis is what the nurses told me. Here’s why:

They ran the infusion rate way too fast. I’m a long day infusion gal. They have to go slow, which takes about 7 hours a day

I didn’t get a bag of saline hydration before each treatment. I do now! Hydration is one of those important steps for me. I get a saline bag plus I drink LOTS of fluid. I even drink a lot in the days after treatment

I was using Optigam which has a carrier ingredient in it my body doesn’t like. I now use Panzega.

I needed a course of prednisone during treatment, along with the Benadryl, Tylenol, and Zofran.

I always follow this routine now (I’m always a 5 day infusion about every 8/10 weeks)

Please start with looking at the rate of infusion! Too fast is too hard on my system anyways! Lower is better!

And REST. For me, a day of infusion = a day of serious recovery (and then some). It’s a hard treatment but is the only thing that works for me ♥️

 

 

 

[Katherine Collins]

I would love to join

I am seronegative

Kat Collins

[Katherine Collins]

I had to retire at 62 from work I truly love because of IVIG therapy. A new job came my way and they wanted to hire me. I was very transparent about my therapy and condition and they hired me and will allow me to Work from my bed in therapy weeks.