IVIG Side Effects
IVIG delivers healthy antibodies to improve an MG flare or crisis but can cause side effects. Headaches, chills, dizziness, and fluid retention are commonly reported (https://myasthenia-gravis.com/plasma-exchange-ivig).
What rate of flow was the nurse doing? Did slowing it, if that was tried, lessen symptoms?
I do IVIG every 4 weeks along with with a Ultomiris infusion or a booster of Ultomiris (1/2) dose. I get a severe headache, body aches, sleepiness, bruising, nausea and my double vision is worse. We have slowed the rate down, plus I take Tylenol and Benadryl before each infusion. I have found a food migraine that & a dark room help with some of the side effects. I take mestinon, Prednisone, and azathioprine for my MG. My neurologist says that I am "critically stable". I usually score 18-19 on my MG ADL. We tried central lines for plasma phresis. They caused blood clot, bleeding and infections. Plasma phresis works the best for controling my MG. It is not an option anymore. So I'm back to doing IVIG.
my heart goes out to you. So sorry to hear you experience such difficult symptoms. How are you managing this week? Wishing you some relief. Sending hugs. -Jessica (Team Member) I hope this message finds you well and that you had a pleasant holiday season! As we welcome the new year, I wanted to take a moment to check in and see how you’ve been doing over the past few months. How have the IVIG treatments been going for you? Have there been any changes in your symptoms or how you feel overall? I know it’s been a journey, and I hope you’re finding some relief and stability. Looking forward to hearing from you.
Jodi, Team Member
I had the infusions in the hospital. And most recent this past weekend: Friday. Sat.& sun .
It took 3 hours each
I definitely don't go faster than 125 MAX. I hydrate the day before and take Liquid IV for the two days of infusions, and then I hydrate for a couple more days. I get a small dose of Benadryl, Tylenol, and, I think, a steroid with my infusions. My only side effects are sleepiness and a slight head ache, but it is more like my head feels full. Sometimes, I take Excedrin migraine as needed.
We are deeply grateful for your willingness to take a moment to share your experience. Your insights are incredibly valuable to others who are also dealing with MG. - Jodi, Team Member
I meant a migraine that that cools my head and a dark room help the best for the IVIG side effects.
no
