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IVIG, the Cycle of Goodness
My immunoglobulin infusions are scheduled every four weeks to the day. I’ve heard of other intervals for IVIG, but this is a common one. The reasoning behind four weeks is the load of antibodies infused is dwindling by that fourth week. If you’re like me, you’re ready for a fresh fill up when that fourth week ends. And now those four weeks…
The first week, post infusion, is usually my “miracle week”! Many days it’s like I don’t have LEMS at all. I walk with virtually no hip weakness. It’s a miracle! Unfortunately, by the second week, the hip weakness begins to creep back in, though often I feel pretty darn good for the next couple of weeks. That’s how it “usually” goes. But immunoglobulin is funny stuff. It doesn’t always go the way I’ve described. Gurrrrrrr.
This infusion cycle I had my usual “miracle week”, a really good one too! But then, with the second week the hip weakness returned with a vengeance. It’s not been a good couple of weeks, and I’m already looking for that next infusion. LEMS is a crazy, unpredictable disorder.
How do your immunoglobulin infusion cycles go? Are they like mine? Or perhaps you have a different infusion cycle that works for you. Inquiring minds want to know! -
2 Replies
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IVIg is an amazing treatment. However, when we overdue more than normal our LEMS can still give us issues. Also, some cycles just don’t do quite as much as others. The 4 week cycle was hard for me because it would take me 4 or 5 days to get past the side effects and the last week was always a down week. My body reacted to the 21 day product half-life! Being on SubQ now I don’t have as many of those treatment highs and lows, thankfully.
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@dawn-debois I’m so glad sub-q has been the answer for you. Sadly the VA will not offer it to me. And as you say, it has quite an impact on us. Fewer lows is a big accomplishment, and something those of us on a four week cycle deal with.
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