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08-21-2012, 06:47 PM
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Junior Member
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What effect do my antibody levels have? My internalist wants to check my levels before they decide if I can cut back on my IVIG.
Right now I go for IVIG every 28 days, for 3 days, but with 2 small kids it's a lot, so I'm trying to see if we can cut it down to 1 day a month and eventually not have to go at all, any opinions? I had a Thymectomy almost 3 months ago and I am feeling pretty good, I think so I think it's time see how my body can do on its own, without all the med's |
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08-21-2012, 07:19 PM
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a high level of antibodies is not good. I have IVIG once a month, it takes 7 hours but it's worth it so I don't have to bother people several days a week to drive me to IVIG. I have had MG since I was 12, I've never had thymectomy. My MG has been controlled by my faith in the Lord and medication. If you levels are low or lowered then you should be able to cut back on IVIG, everyone is different. This is the first time I have ever had IVIG in the 27 years I have had MG. Hope this helps you. Any questions just ask!
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08-21-2012, 07:26 PM
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Antibody levels have little to nothing to do with symptoms or need for medical therapy. One can have sky high levels and be completely "normal" and others can barely have a positive test and be on a vent.
I hope your doctor doesn't do anything rash based on a blood test. The fact that you are feeling good in itself would be reason to try cutting back. Three days of IVIG every month is a lot. Most just do 1 day every 2-3 weeks as maintenance. I'm glad you asked about it. |
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| "Thanks for this!" says: | pingpongman (08-21-2012) |
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08-21-2012, 08:28 PM
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That's kind of what I'm thinking, drop the IVIG down to once a month and see if I can handle it, and then drop it more and more.
I still have my moments of weakness, but I'm 100% better than I was 10 months ago 
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08-22-2012, 08:11 AM
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Kimmy,
I had my operation just over two years ago, first noticed a big difference in my condition after about 18 months. Since then I have stopped all medication, I was on mestinon only, and have increased the time between IVIG to 10 weeks. I would love to get off this IVIG totally but according to my neuro there is no way to determine if you need it or not...the only course is to stop it and see what happens...not very scientific...but seems that is the fact. Chris
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08-22-2012, 02:11 PM
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It is my understanding that the levels have nothing to do with how serious your symptons are. Also this is confirmed with my Neuro. MY levels were over 500 at my only test ( rather new to mg). However, I take mestinon 3 x day-60mg. My symptoms were droopy eyelids, speech, and chewing. All are gone with medicine. I can only hope this stays this way.
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Antibody levels
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