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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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07-18-2010, 12:13 PM | #1 | ||
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i did much better with the last dose of IVIG yesterday but still had trouble walking at the end of it, just a bit shaky and unsteady for a couple of hours and then i came around. but i felt much better throught the process. i requested the same nurse who knew the situation from the day before and she went very slow, kept the rate at 80 the whole time and it made al the difference. i really did well on the first three days so i just think maybe i got a funny fourth batch or it was just too close together. . .
tnalawson--my dose is 10% in a 300ml bag. the manufacturer is gammunex IVIG for 5 days every 2 weeks right now. i am unsure of the conversion when you are saying 400mg??? they start slow, based on weight and then go up every 15-30 minutes as you tolerate it. . . . good luck with your husband's treatment. i really hope it helps! |
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07-18-2010, 05:44 PM | #2 | ||
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Thanks so much. I am glad to hear you tolerated it better. Why are u getting ever 2 weeks
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07-19-2010, 09:53 AM | #3 | ||
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I am getting it every 2 weeks because I have been hospitalized twice in the last two months for respiratory, bulbar, and limb weakness issues due to probable myasthenic crisis. I am seronegative and all my tests are negative but I had a great response to IVIG so that is where we are right now as we test further. . .
my new neuro is an MG specialist and he says it cannot be anything else but MG so he's hanging in with me which is awesome. Even after I had the first IVIG though certain specific MG muscles that he assesses were still weak and I had shortness of breath on testing and he said I needed much more treatment so he ordered IVIG every two weeks and wants to reduce my prednisone from 50 mg down as I gain strength so that I can fight infection in preparation for a thymectomy. So that is the current plan. . . debra |
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