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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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Senior Member
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So! My doctor and I worked out our complications, and I'm starting Imuran today.
I passed the genetic test to make sure I have the enzyme to metablolize the drug. He told me to watch out for flu-like symptoms and abdominal pain. I have a blood test in two weeks. Anything else I should be on the look-out for? I have the impression that not many MGers go into remission on Imuran alone, but I still have hopes that it will work for me, since my case is relatively mild. Abby |
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#2 | |||
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My Doc also told me to watch out for mouth sores...
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"Thanks for this!" says: | Stellatum (03-07-2011) |
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#3 | |||
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Member
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I started Imuran at the end of Nov and haven't noticed any change. I just finished IVIG the doctor ordered to hold me until Imuran kicks in. He said 3-6 months for the Imuran. I also take 3 60mg tabs of Mestinon during the day and 180 time release mestinon at night. So far nothing has helped me. My next appt is end of month and will see what is next.
Hope it helps you. Mike |
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#4 | ||
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Senior Member
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Mike, you and I are in the same position. I just finished my first IVIG, too, and for the same reason--to hold me over until the Imuran kicks in (though I may need more IVIG treatments).
Did you say that you didn't notice any improvement from the IVIG? My neuro today told me that almost all of his patients see some improvement, but that he has one who didn't. As for me, I am definitely better--but that might only mean I have overcome my "crash," which is how my disease tends to go, anyway: up and down. So I'm a little discouraged, IVIG-wise, but trying to be patient. I'm taking the Mestinon, too, but I don't really think it helps me. Abby |
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#5 | |||
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Member
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I'm not sure what my neuro is going to do now. When I went for IVIG I was not in crisis or anything. As for the Mestinon, I felt same way, thought it was doing nothing until I missed a couple of doses. When I miss a dose my right eyelid goes completely closed. So I now know it is doing something.
Mike Quote:
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#6 | |||
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Member
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Watch for loss of apetite and red dots on the skin
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#7 | |||
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#8 | |||
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Member
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I am not 100% sure but in addition to the cautions mentioned above I was told this.
The red dots just indicate a liver issue- as well as loss of appetite- I think. I would call your doctor and let them know, it could be nothing or a reaction to the med. Just make sure. Don't get too worried though, loss of appetite (though not good) is one of the lesser detrimental side effects from this medicine |
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"Thanks for this!" says: | pingpongman (03-08-2011) |
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#9 | ||
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Grand Magnate
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Petechiae (aka, red dots on skin) is bleeding into the skin and should always be investigated!
Good luck with the Imuran. Annie |
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"Thanks for this!" says: | pingpongman (03-08-2011) |
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#10 | |||
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Member
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I was waiting for your reply. I am going to have 2 skin cancers removed later this month and they appear as 2 red dots on my head. My GP discovered them.
Mike Quote:
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