Just finished two days of IVIg infusions for the month. My CPK numbers were SLIGHTLY elevated at the beginning, but came back down again. So, for November, I'm going to go in and have lab work done the day before IVIg is scheduled. That means the lab results will be in Dr. L's hands at my appointment the next morning. If my CPK levels are normal, then we will cancel IVIG for the time being. I'll continue to get lab drawn every few weeks to make sure that it doesn't climb back up. If it does, then I'll have to get right back in for another infusion.
Not sure how I really feel about it. I mean, I'm glad that my labs have looked good, but we know that the IVIg works for me. Each time we've tried to stop it, I've gone into a flare. Why can't we just keep going? Why fix something that isn't broken, you know? It's all b/c of insurance. To prove to the insurance company that I need it, I have to stop taking it and flare up. Nice. They aren't the ones that will take a few months recovering from the flare.
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