Thread: Can you relate?
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Old 01-08-2008, 11:19 AM
lminick lminick is offline
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Join Date: Oct 2007
Posts: 4
15 yr Member
lminick lminick is offline
New Member
 
Join Date: Oct 2007
Posts: 4
15 yr Member
Wink Mestinon and Cellcept work well for me

Haven't been on this forum for a while. You're right it's a great place. Like you, I'm working And like you, I've done a lot of research on this illness etc,. I work for a medical publisher so have access to some of the largest journals.

Like most of us, I just wanted to get my life back when I first got this. Since then, I have gotten my life with the caveat that I've also learned how to deal with MG, listen to my body and slow down when necessary. I was diagnosed in 2005 and have been on Mestinon and Cellcept together since May 2006. I think it's working.

I started with mestinon in Nov 05 and quickly saw some relief. Over time though, the results weren't as good as they had been. By the time of my surgery (due to thymoma), I was up to 60 mg/5x/day and it still wasn't working well. After surgery, we started 1000 mg Cellcept 2x/day along with the Mestinon. As others have said, it takes 6mos to a year for the Cellcept to really begin working. It took a little while but I'm now down to 60 mg Mestinon 3x/day. Surgery is supposed to help the symtoms too, but I think the Cellcept is doing its job (and no weight gain/depression as with Prednisone!). As my doc (Dr. Drachman) explained it, Mestinon acts like a bandaid only - that's why you often need more as time goes on. Cellcept actually stops the "bleeding". I'd suggest trying it and see how your body reacts.

Since you like doing research, you may want to register with Highwire Press(highwire.com). They're a large consolidator of journal articles. You can register free of charge to get e-alerts abstracts for articles with your preselected search terms (eg. myasthenia gravis cellcept etc). They're a great way of keeping up with the medical literature.

Let me know how it goes.

[/QUOTE]question: has anyone tried a combo of mestinon (while it is still working) and then adding cellcept during the initial phase of mestinon therapy?

i ask this b/c i have already gained a lot of weight since i came down with MG (before i was dx i thought i was just tired all the time and i ate to try to boost the energy levels. my neruo is hesitant to put me on pred but i'm wondering if cellcept and mestion alone might be enough to keep me a float on a long term basis?[/QUOTE]
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