IVIG Side Effects

Hi Jody,
I was doing better with the IVIG and Ultomiris infusions, until August of this year. I reacted with hives, swelling and itching in my mouth and throat, and Asthma problems.
For my September infusions, I was more aggressively pre treated with pepcid, prednisone and famotidine. I reacted a lot quicker than the time before. They had to get the emergency response team to come evaluate me. I was then sent to the Emergency Department for observation.

My doctor stopped the Ultomiris infusions. Yesterday was my IVIG infusion. My rate was slowed down to 115. It took 7.5 hours along with a liter of saline for hydration. I travel 4 hours, one way to my infusion center. Restrooms are few and a long ways in between, making hydration the day before a challenge. I did better with the saline and the slower rate.
I have reacted to vyvgart, rituximab, and Ultomiris infusions. IVIG has not worked consistently for me. Plasma paresis is not an option either.
I have only had this diagnosis for 5 years and am 64 years old. My husband and I think that I have had this since my 30's and never had a provider even consider MG as the reason for my bizarre symptoms.

It's getting harder and harder for me to do simple things. This almost reminds me of a relative who had MS. Watching them have harder and harder times. Difficulty eating, drinking, talking, and walking. I am struggling with the same mobility issues. I have to give up driving, teaching, running, working in my gardens, swimming, camping and a lot of my hobbies in the last five years. I love where we live in the country side, yet I wonder if living in the city would be better.
Sorry, high dose of steroids causes me to get a bit depressed.
Any suggestions?

No

NO

None. It gave me my life back!!