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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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10-11-2009, 02:53 PM | #1 | ||
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Grand Magnate
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I wanted to bring this topic up for discussion. I have no idea how much any of you know about MG and remission. I want to clarify a few things just in case you don't have a lot of knowledge of it.
There are very few people who ever have all out drug-free remission. That means absolutely no drugs, not even Mestinon. Then there is drug-induced remission by taking Mestinon, Pred, Imuran, Cellcept, Methotrexate, Prograf, IVIG, Plasmapheresis, etc. More people have this but definitely not everyone. There are not a lot of large studies on this issue. There certainly are not studies that show whether a thymectomy alone (or with other drugs) can achieve remission all by itself, though I believe UNC is working on that. I realize that there are people with MG who don't care how they get to remission as long as they get there. It can often take more than one drug, like a combo of Pred and Imuran for example, to get there. And that brings with it LOTS of side effects. We all want a better quality of life, which really is the goal of any of these drugs (by making MG get better). Some of these drugs, however, come with their own impacts on health that can reduce your quality of life even if your MG symptoms are reduced or gone. I am not saying that one way to treat MG is better than any other. That is up to you and your doctors. What I want to do is point out that remission, while awfully enticing, may come at an even greater cost to some people. So the goal shouldn't only be remission - at least for me - but to have the best quality of life you can. False hope is not good. Hope balanced with knowledge and a good neurologist is better. And pulmonololgist and primary doctor and any other doctor you need. Again, at least in my opinion. I wish all of you could have an all out, drug-free remission Annie Some of the many articles on the topic: http://www3.interscience.wiley.com/j...TRY=1&SRETRY=0 http://content.karger.com/ProdukteDB...asp?Doi=114612 http://www.ingentaconnect.com/conten...00006/art00009 http://www.roche-trials.com/patient/...ts/stur33.html MG and Drugs: http://neuromuscular.wustl.edu/mtime/mgrx.html Last edited by AnnieB3; 10-11-2009 at 03:16 PM. |
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"Thanks for this!" says: | DesertFlower (10-18-2009), kristy (10-17-2009) |
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