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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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01-09-2014, 07:58 PM | #1 | ||
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Junior Member
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I was diagnosed with MG in Sept 09. For the first three years, I did pretty well with only minor bouts of fatigue and with some speech problems . I was put on 60 Mg of Mestinon daily and it worked for me .
However just before Christmas 2012 . my complacency was shattered .Within days , I could talk only for a few minutes before my speech slurred ; I couldn't reach up to a shelf to get a glass and I would just collapse on the ground with no warning .and I was totally fatigued all the time ..So much for having this insidious disease under control . My neueo ( very knowledgeable ) put me on Prednisone 60 Mg daily and Cellcept 250 Mg twice daily . I did begin to improve slowly over a few weeks , but decided to try IVIG as I'd read that it could cause rapid improvement I had a week of IVIG treatments at the local hospital ...Unfortunately , for me , there was no noticable improvement ,. But hey , for a $ 90,000 charge what can you expect ! Fortunately my insurance paid most of the cost.Whew !! The Prednisone did begin to work but with many of the unpleasant side effects ..eg ..weight gain... moon face ..easy bruising , etc . Today I'm back to my early status ..mild fatiguing only .I'm down to 2.5 Mg of Prednisone ,and still on the Cell Cept ,and I think the CellCept is now fully effective . With MG things can get worse , but they can get better and I'm so very thankful to be where I am .. Jack |
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01-10-2014, 10:11 AM | #2 | ||
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Senior Member
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Thanks for sharing, Jack. It is encouraging to hear a success story.
One comment: Mestinon has a very short half-life. Most people find that its effects wear off completely in four hours. If it was helpful to you when you were taking it once a day, you might ask your doctor about taking it more often. Mestinon treats symptoms only. Some people find that it gives them digestion trouble, but other than that it's considered relatively free of side-effects. Abby |
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01-10-2014, 09:43 PM | #3 | ||
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Junior Member
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I mistakenly stated that I took 60 Mg of Mestinon daily ....Correction ...I took 60 MG ...four times a day ...
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"Thanks for this!" says: | Stellatum (01-11-2014) |
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