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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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01-29-2018, 05:54 PM | #1 | ||
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The relief only lasted 3 days. I’m back to leg and arm weakness to the point of falling and am so disappointed. This doesn’t seem right. Have others gotten such short relief from their first IVIG treatments?
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01-29-2018, 07:35 PM | #2 | ||
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My first round was a series of 5 infusions. I got a couple of weeks out of it. So, 3 days from 2 infusions would not be out of the realm of possibility. The bad news is you didn't get a lot of improvement. The good news is you now have two "treatment failures" (prednisone and IVIG) under your belt, which will help you to access some of the more "fancy" treatments like Rituxan or Soliris if needed down the line.
It would be interesting to see how you'd do with a full 5 day loading dose. Plasmapharesis might also get you better relief, but again, it's only good for a few weeks as well. Personally I've never tried plasmapharesis, but have tried (and failed) almost every other treatment. Last edited by 4-eyes; 01-30-2018 at 09:55 AM. |
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"Thanks for this!" says: | pingpongman (01-29-2018) |
02-20-2018, 07:28 PM | #3 | ||
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Junior Member
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I did 84 PlasmaPheresies on a weekly basis but had to get off because of me getting anemic my Iron and RBC were getting extremely low...so now I've been on IVIg for a little over a year every 3 weeks 80g infusions and doing ok, it's not as good as my PlasmaPheresies but keeping me a float and really helped me fight off viruses and infections, my Iron levels are back up and my RBC are 160, when I was on PlasmaPheresies I got shingles!!! real bad because of my system being out of balance. I'm also on a heavy dose of Mestinon and 200 mg of Imuran/Azathioprine daily plus 10ui VitD daily and maintaining a descent lifestyle.
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"Thanks for this!" says: | pingpongman (02-21-2018) |
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