How did you feel after IVIG
Hello, I just finished my first dose of IVIG. I’m curious how others felt after their first treatments and subsequent doses?
I couldn’t swallow yesterday and started having excruciating pain down one side of my neck. I haven’t been able to hold my head up for a couple of days.
Dr said it could be a reaction from the IVIG so he started me on Benadryl yesterday and I will continue taking until pain subsides. He said to start 5 days before my next treatment. If continued after next treatment he will switch my IVIG. I have also been extremely tired today and it’s been (4) days since my last infusion.
Anyway, just curious how others have felt. Thanks!
I have had five or six courses of IVIG. Most were in a hospital so I didn't keep count. I also had two that were in an infusion center. I have been doing better for about 10 weeks now, but muscle weakness is getting worse. That is why I'm starting Vyvgart Hytrulo but with two out of four treatments there has been no improvement yet. If you are not improving, ask your doc about getting Plasmapheresis. This is an IV (using a mid line IV) treatment done in the hospital so you may have to be admitted. It helped me a lot when the IVIG wasn't working much. It is all done in one treatment lasting a couple hours.
https://www.healthline.com/health/plasmapheresisLiterally the 2nd day of my first IVIG treatment (4 doses now, every 4 weeks, so i have been having them for 4 months now), i was no longer able to swallow anything, I couldn't speak for more than 30 seconds then not be able to do anything but mumble, I couldn't chew, MG got really bad. Three days later i was able to start to chew, swallow and talk some, a week later I was able to eat a meal by eating 1/2 and then the other 1/2 later, and 2 weeks later I could eat a full meal, and talk and chew normally again. I had 0 headaches, or body pain, but in my life i could probably count the number of headaches i have had on 1 hand, I just don't get headaches. I mainly hydrate pre-treatment, but don't take any pre-meds (Tylenol) for my IVIG treatments.
My first experience with IVIG was for surgery prep to have a thymoma removed. I felt amazing. I have since had a serious flare up which has required monthly treatments. My flare landed me in the hospital for a loading round of IVIG. I have only taken Gammagard. I tolerate it very well. I premed with benadryl and tylenol. I have only experienced headaches when I wake up the next day. I have combated this with being diligent about hydration and I take tylenol at bedtime. This seems to reduce the issue for me. Hydration really seems to play a role for me. Possibly trying a different manufacturer of IVIG will help? Best of luck to finding improvement!
I get the IV infusions every other week Glad my insurance pays a lot of it they are expensive
