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Old 10-25-2012, 07:22 PM #1
Spike Spike is offline
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Default Success (so far) story

I thought I'd post what is working for me after about 2.5 years of treatment since my symptoms are recently pretty much in remission. When I got my dx I wasn't able to walk more than a block at a time. Now I can walk about 5mi/day (I was an ultra-marathon runner pre-MG):

Prednisone 20mg/day (down from 60mg)
CellCept 1000mg morning 1000g evening
Mestinon 60mg in the morning (I've stopped using the rest of the day since the symptoms are gone but it very helpful before)
IVIG 1/week

The IVIG is hideously expensive, but it's worked!
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"Thanks for this!" says:
StephC (10-26-2012)

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Old 10-25-2012, 07:40 PM #2
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Interesting, that's the same treatment I get now except the Ivig. I think my Cellcept kicked in about 6 weeks ago. Now I think Mestinon is not doing a thing. I have stopped the 180 time release with no effect and often miss a 60mg during the day.
Mike
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Old 10-27-2012, 10:22 AM #3
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Quote:
Originally Posted by Spike View Post
I thought I'd post what is working for me after about 2.5 years of treatment since my symptoms are recently pretty much in remission. When I got my dx I wasn't able to walk more than a block at a time. Now I can walk about 5mi/day (I was an ultra-marathon runner pre-MG):

Prednisone 20mg/day (down from 60mg)
CellCept 1000mg morning 1000g evening
Mestinon 60mg in the morning (I've stopped using the rest of the day since the symptoms are gone but it very helpful before)
IVIG 1/week

The IVIG is hideously expensive, but it's worked!
Congratulations! I am a runner that has had to give it up yet again. I was never a marathoner, but had worked back up to 3 to 4 miles. I am hoping to have success with the Prednisone so I can once again run.
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Old 10-27-2012, 11:40 AM #4
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It is always nice to hear of people who are doing better.

Thanks for sharing this with all of us.
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