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Old 05-18-2014, 11:13 PM #1
angell angell is offline
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Default Recently diagnosed with MG

Hello all,

As I indicated above, I've recently been diagnosed with MG (three days ago) and started on mestinon immediately upping the dose every three days to 120mg/three times a day.

Pretty pleased actually - I've been sitting on this for so long it's nice to know. Besides, the symptoms are the same as they were before I knew - only difference is, today I know what I have and can treat it to the extent it can be treated.

Could anyone share their experience with how quickly the meds began working noticeably? I've been on 30mg three times a day now for three days and just took my first 60mg dose...and physically, it's my worst day in a year. Probably coincidence, but since I have this fabulous resource here, I thought I'd ask.

Thanks
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Old 05-19-2014, 08:29 AM #2
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Mestinon should take effect soon after taking it. I would usually notice it within twenty minutes, with full effect within an hour. It is short acting, so clears out fairly quickly.
In my case, and remember everyone is different, I could not tolerate a full sixty mg of mestinon. The effects were too pronounced for my comfort and ran out before I was scheduled for the next dose. So I had wide swings of strength and absolute weakness. My solution was to take thirty mg every two hours instead of sixty every four. This works fabulously for me as I have a constant comfortable level at all times.
My doctors do not have a problem with this as long as I do not exceed the prescribed dose.
I have this same problem with other meds, where I absorb the maximum dose immediately, and am left without the needed effect until time for next dose.,
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angell (05-19-2014)
Old 05-19-2014, 02:08 PM #3
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I'm w limpy. I do better at 30.

Welcome to the group and holler if u need anything.
Good luck!
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Old 05-19-2014, 05:23 PM #4
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Thank you both for your responses. Let me ask this if I may: I have high blood pressure. Prior to getting it under control, I had vertigo very badly. Ever since last night, its back after not experiencing it for six months. It looks like this is evolving into two questions...

Does Mestinon affect blood pressure?
Does Mestinon cause vertigo?

Too, I've had a number of very severe stabbing pains in my head since last evening which have come with the episodes of vertigo. I don't always get the stabbing pain when I experience vertigo, but if the stabbing pain comes, I know my world is about to spin.

Anywho, I've taken one complete day of 60mg now and no relief <insert sad face here>.
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Old 05-19-2014, 06:22 PM #5
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Quote:
Originally Posted by angell View Post
Hello all,

As I indicated above, I've recently been diagnosed with MG (three days ago) and started on mestinon immediately upping the dose every three days to 120mg/three times a day.

Pretty pleased actually - I've been sitting on this for so long it's nice to know. Besides, the symptoms are the same as they were before I knew - only difference is, today I know what I have and can treat it to the extent it can be treated.

Could anyone share their experience with how quickly the meds began working noticeably? I've been on 30mg three times a day now for three days and just took my first 60mg dose...and physically, it's my worst day in a year. Probably coincidence, but since I have this fabulous resource here, I thought I'd ask.

Thanks
Sorry to hear about your diagnosis, I am newly MG diagnosed also, anti-musk , now three weeks, when they first suspected from blood tests, I was put on mestinone 60 mg which seemed to cause me to have a reaction and go into crisis after a couple days, spent 8 days in ICU, 9 plasmapherisis treatments and now am home a week and a half.

I now take prednisone 20mg x 2

Dan
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