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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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08-28-2009, 10:26 PM | #11 | |||
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Hey Alan! I'm sorry to hear the Imuran didn't work for you......I was taken off of it as well and am now on Cellcept (2000 mgs). The weight gain is a pain - trust me, I know - but it will subside as your dose goes down (pred) - I am @ 40/60 alternate days.......and I HATe looking this way! AS for the mestinon, I am able to take it at my discretion, so no problems so far, though I have taken as many as 8 and as few as 2..... Hang in there, honey! It gets better! Love, Erin Quote:
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08-29-2009, 03:47 AM | #12 | |||
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thanks Erin
the plan is to see how i do with less Preds as for mestinon ive stoped that as i felt their wasnt a need for it and can always take it on a bad day so what everyone is saying is that i may of been on to much meds worse is the worry what if its something else alan |
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08-29-2009, 10:54 PM | #13 | |||
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guys i can so relate to the pred weight thing! last week i told my neuro that my head was ready for halloween, all we need do is stick a candle in my mouth! i've gained back all the weight i'd lost by not being able to chew and had kept off even on the mestinon. (there goes my modeling career) another 4-6 mos. will have me ready for the jabba the hutt lookalike contest.
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08-29-2009, 11:31 PM | #14 | |||
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THanks for the laugh! It was great! It made my night!
Take care! ERin Quote:
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08-29-2009, 11:36 PM | #15 | |||
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Less pred? That is awesome! Too much pred can make you feel as bad as too little - per my dr!
I know what you mean about the fear thing, but just for now (!) take it one day @ a time! You have a GREAT family and lots of friends who love you and want you to FEEL BETTER - myself included..... Now, tell me how nice and COOL it is there! It has been over 100 degrees for days on end.....thankfully I'll be in upstate NY soon - enjoying the cool weather -imagine me trying to explain running naked in the front lawn of the b & b - just enjoying the cold! LOL! Just kidding - I would NEVER do that! How is your mum? Your daughter? Wife? Love, Erin Quote:
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08-30-2009, 07:33 AM | #16 | |||
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hi Erin
our summer hasn't been to bad we have had some hot days but weeks not really and theirs always a nice breeze can't imagine your temp' just unbelievable ha ha that was funni about the garden and do all of us get that huge swollen face yak still it keeps us able to do things my mum came and stayed with me which was nice and my daughters still making sure that im ok every day and all doing well so i may be put on cellcept if i have problems ... hugs Alan |
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09-01-2009, 01:20 AM | #17 | |||
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Hi Alan,
sorry you are going through all this at the moment!!! Great that your pred is being reduced I hope keeps going smoothly Kate
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