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IVIg- How bad are the side effects? Is it really worth it?
I will admit, I held off on starting IVIG for well over a year due to my fear of the side effects. A lot of people post about “aseptic meningitis.” Being a chronic migraine sufferer, I couldn’t imagine starting something that would bring on even more migraines, possibility needing to be hospitalized. When my LEMS started progressing, I had no choice but to start. It’s been a godsend in my LEMS management. How about you? Are the side effects really that bad? Is the treatment worth it for you?
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5 Replies
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I experienced the aseptic meningitis symptoms during my first round on day 3 of my 5 day round of IVIG. It was AWFUL! I don’t normally have migraines. It was worse when I would turn or bend my neck and with light. I texted my neurologist who advised taking excedrin. It took several doses but finally helped. I increased hydration and that also helped.
During my most recent IVIG (1 day) I had no symptoms but forgot to hydrate as much as I should. The third day after my treatment I had flu like symptoms (body aches and nausea). I hydrated and symptoms were gone the next day. My advice: Hydrate. Hydrate. Hydrate!
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Hi Carmen, yes, the loading dose of IVIG is a doozy as far as migraines are concerned. I remember it full well. However, the change in energy and elimination of symptoms afterwards made me a believer. Hydrating is very important. I actually get 500 mls of saline before and after each infusion.
You make a good point about “aseptic meningitis SYMPTOMS”….I do believe that the symptoms of a bad migraine do not necessarily mean you have aseptic meningitis. My neuro says they have to do a spinal tap to confirm if it is or not. I just hunker down with meds, hydration and sleep when the symptoms are bad. It is common to feel flu-ish a few days after treatment….I feel like it’s when the donor antibodies are taking over and our own antibodies are putting up their “last fight.”
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Oooooo! Good suggestion about the saline! Is that something I can request or does it need to be prescribed?
I am thankful for all that choose to donate…and hope they are good fighters and can give my stubborn antibodies a smack down! 🙂
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Saline needs to be prescribed but your nurses can suggest it to your neurologist. My neurologist started me out with the saline because I suffer from chronic migraines and so the hydration is exceedingly important. I also have blood pressure drops on IVIG from my already low BP levels so the extra fluids help counteract that side effect.
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Interesting! My blood pressure is always low but it dropped during the treatment. I just though I was feeling chill! 🙂 I’m always dehydrated – even when I drink plenty of water so extra saline would be nice! They gave it to me last time but not this time. I didn’t think much of it, but I should ask next time!
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