If you don't mind
@Gingergrrl may I ask how soon after starting IVIG you noticed improvement? I know you've told your story plenty of times, but I can't remember how quick it was. I seem to remember you had an issue at the start and had to visit the hospital opposite from Dr. K?
You have a good memory and I did end up going to the ER about ten days after my first IVIG infusion (in July 2016) because it was infused WAY too fast. My doctor had written that the infusion speed could not go above 35 and could not be done faster than eight hours (for the first infusion) but the nurse completely ignored his instructions and did the whole infusion in 3 hours.
I ended up getting a (delayed) IVIG headache and intracranial pressure and after ten days, I couldn't tolerate it any longer and my ex-husband took me to the ER. Except it was the ER at the same hospital where my MCAS doctor practices and where my infusion center is located. You are correct that I was hospitalized in May 2015 (over a year prior to starting IVIG) at the hospital that is opposite from Dr. K but that was for anaphylaxis and to try to get my MCAS reactions under control after being unable to eat food for several weeks (and had nothing whatsoever to do with IVIG).
When I went to the ER in 2016 b/c of the IVIG headache, we wanted to make sure that I did not have aseptic meningitis and to also stop the headache. Headache is the #1 side effect from IVIG but it is usually more minor and lasts 3-4 days. This first one was b/c the infusion speed was too fast. I was given Decadron and Fentanyl in the ER to reduce the intracranial pressure.
All future IVIG infusions were done at a MUCH slower speed and the nurses followed my MCAS doctor's orders precisely and I never had that problem again. I hope this helps!
Edited: I forgot your first question which is how soon I noticed improvements. The very first infusion was such a nightmare that I truly cannot even remember the positives?!
But I noticed improvements almost immediately with the rest of the infusions. My MCAS went into remission and has never returned. I was able to tolerate normal food, my reactions to odors and perfumes, etc, disappeared, the anaphylaxis was gone, and I could even eat in restaurants again!
Then other symptoms started to improve including improved muscle strength, especially in my arms so I could open doors, cut food w/a knife, open bottles, open boxes, cut paper with scissors, turn on the shower faucets, squeeze shampoo bottles, and things I had not been able to do at all.
But the debilitating shortness of breath/breathing weakness and POTS did not significantly improve until we added Rituximab. And I did not walk without wheelchair or drive my car until after about nine months on Rituximab. Now all of that is in remission and I have been able to do PT and continue to strengthen my muscles. But the MCAS went into remission from IVIG alone before the Ritux was ever added.