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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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#1 | ||
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Junior Member
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Hi Cooley,
I am new to all this so I am still learning about meds. I was diagnosed about 4 months ago. So far my neuro has told me to rest when I get tired he has not mentioned anything to me about increasing my mestinon. I am on Mestinon, Mestinon time release, and Imuran. Hope you get some answers. ckitty ![]() |
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#2 | ||
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Member
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I no longer take mestinon {due to reactions} but years ago when I did, the more active I was the more I took. Most likely not the right answer. I would speak to your Dr and see what he/she feels about it.
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#3 | ||
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Grand Magnate
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Cooley, When you do an activity, you use up acetylcholine. The more you do, the more you use up. You can be worse that day, even worse the next and even worse on day 2. I call it second day payback. I don't know why I get even worse two days later but that's an autoimmune process for you. My thought is that activity could rev up the immune system and the AChR antibodies but that the real damage isn't done right away. That's just conjecture in the absence of any good info out there.
Joanmarie is right, a conversation with your neuro is what is needed. My neuro has okayed a higher dose of Mestinon for me on the days I go out and do an activity. You should not do that all by yourself. Too much Mestinon and you can get weaker. A good neuro will know what your max is, according to your neuro exam, etc. Alternating an activity with rest is ultimately the best course of action. That's, of course, in conjunction with drugs. Maintenance is the key with MG. Annie |
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