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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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I am on azathioprine (Imuran), besides Mestinon and deflazacort. I started azathioprine on February and it is not working yet. I have to wait at least till September and the MG symptoms are worsening. Is anyone here on azathioprine too? How long did you wait for the drug start to work? Thanks!
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#2 | |||
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Member
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Hello...
I am not taking it but I did find this link... http://www.macalester.edu/psychology...ppression.html I hope someone comes along with experience soon!
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Cyclical Pituitary Cushing's, Addison's via bilateral adrenalectomy, Growth Hormone Deficent, Migraines, Trigeminal Neuralgia, Hashimoto's, Hypothyroid, Myasthenia Gravis? |
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#3 | |||
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Member
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Hiya Bluestone
I have had MG since December 2002, I was put on azathioprine on 21 February 2003 and then had a thymectomy on 8 July 2003. Im really not sure how long it took for the imuran to work, but Im sure it took quite few months. I think I was still in a state of shock for most of 2003, as my MG was pretty awuful, well I thought so, but my neuro didnt!! compared to what I was like back in 2003, now Im sooo much better, although still no where near what I was like before mg, but still I guess you have to look on the bright side. Feel free to ask me any questions you may have, and take care! ![]() |
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#4 | ||
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Junior Member
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Hi, Redtail
Tomorrow it will complete 4 years of your thymectomy... I'm glad you are better then before that, and I know what you say about being no where near what you was like before mg. You know, sometimes I'm very frightned with how fast are the symptoms of MG worsening and I see myself searching and searching different ways to slow down or to stop this process. I know I can't, but when it's possible to share experiences with others, certainly it's a good thing. Less than one year ago I was having just legs and arms weakness. Now, almost 10 months later, I can't walk some days, I'm having chew, swallow and breath symptoms, my vision is very bad. I'm anxious about the medications start to work. I wish I could recover some things in my life. The neuro said that if azathioprine does'nt work, thymectomy would be a possibility for me, althougt now it's not indicated. One thing I would like to know is about the drugs: are you taking them just as before thymectomy? Take care! Bluestone |
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#5 | |||
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Member
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Hi Bluestone,
I cant believe it will be 4 years!! My brains in a bit of a fog at the moment, Ive got the flu, and I tend to shut down when Im not well. I know it can be frightening when symptoms get bad, I fell over outside(I live on my own, with my dog) I couldnt move, not even crawl!! I was terrified, it took 20 minutes to crawl inside, when I told my neuro, he wasnt at all concerned, so the next time it happened, I just layed on the floor, til I could crawl back to bed(this happened a couple of years ago). My medication is, Prednisilone was 60mg daily dec 2002, now Im on 15mg alternate days, azathioprine is still 75mg twice daily, and mestinon I was on 4 60mg daily and a timespan for the night, now Im on 1-3 60mg daily. I know my neuro wanted to play around with changing my azathioprine to a different drug because he wasnt happy with how I was going, but is waiting to see how I go. It must be very scary to have things get worse not better, I wish I had some answers for you, unfortunatley MG is so different for everyone. Are you able to have IVIG, I know this helps some people, Ive had 2 courses, and heard it has helped other people, but Im in Australia, and most medical care is free here, I know in some parts of the world it can be expensive. I hope things start to improve soon, take care Redtail |
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#6 | ||
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Junior Member
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Hi Redtail
Hope you are better from the flu. Where I live IVIG is not an option for me, it's too expensive. It's hard to believe that things can start to improve... (I'm working on faith and hope, things that are suffering from some kind of myasthenia these days.) Uau, have to take all these medications after thymectomy... Maybe you can in the future take less and less... Do you fell that your memory is worst that before taking all these drugs? (I have this feeling about mine.) Thank you for your words and take care. Bluestone |
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#7 | ||
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Junior Member
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Hi, Rumpled,
thanks for the link! |
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