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Old 05-31-2013, 06:53 PM
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cait24 cait24 is offline
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Join Date: Sep 2012
Location: Newtown, PA
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10 yr Member
cait24 cait24 is offline
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cait24's Avatar
 
Join Date: Sep 2012
Location: Newtown, PA
Posts: 709
10 yr Member
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I am currently tapering off pregnisone. It did well for me and I did not have too many side effects. But there are a lot of possible severe side-effects with steroids. Please read up on them first too make sure it is worth the risk. There are several options for MG treatment. Mestinon just temporarily relieves symptoms. For me it just takes the edge off the disease so I am more functional It is not a cure, it will never give you a remission.

Besides steroids, there are other immunosuppressants with less side effects like cellcept and imuran. There is also IVIG and plasmaphoresis. Perhaps you should read up on all of them before asking for more steroids. When the neuro put me on steroids ( for 6 months) his comment was 'a short term dose of steroids for 6 months usually does not cause long-term problems in most people'. I get nervous when doctors start using multiple qualifiers like "ususally" and "most people".

I already have bad osteopenia, recent fractures, high blood sugar, fluid retention and diarhea and pregnisone can make them worse. The part I find most annoying is the insomnia. MG needs rest to recover and I am not getting that on pregnisone. ALthough pregnisone did stabilize my symptoms, they are more predicable and I have fewer really bad days. It did improve my mood and relieve the pain in my muscles. I am scheduled to get IVIG in 2 weeks. I hope they put me on cellcept at the next visit. I also want a thymectomy. I have no tumors but the statistics show that almost 80% of MGer have hyperplasia of the thymus. 30% of MGers go into remission after thymectomy and almost all show notable improvement.

kathie
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