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Mestinon Question

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Unread 12-03-2012, 03:18 PM   #1
Lin_Z
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Default Mestinon Question

Hello All,

Just wondering if anyone has experienced more weakness and/or confusion since starting Mestinon?
My symptoms never used to be this bad this frequently and I'm beginning to wonder if its because I am taking this medication?

I used to take 60mg every 5-6 hrs and it really helped with the double vision, but now (one month later) it seems to have no effect at all and taking 90mg just makes me nauseous.

Any suggestions would be appreciated!
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Unread 12-03-2012, 04:34 PM   #2
Stellatum
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This is a tricky disease. It's typical for it to have ups and downs. You might be having a flare-up that's not related to the Mestinon dose.

Mestinon can make you weaker if you're taking too much. But the key thing to know about this drug is that it has a short half-life. It leaves your system fast. If you were taking 60mg every five or six hours and it wasn't enough, the best thing to do (with your doctor's permission!) would be to take it more frequently, not in higher doses.

If you feel better about half an hour after you take it, but after five hours you are weak, that's a good sign that you need to take your doses closer together.

Abby
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Unread 12-03-2012, 07:34 PM   #3
StephC
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FYI i am now taking 60 mg every 1.5 hours consistently while awake for the last 7 days (i am setting my iphone alarm and sticking to it) and actually think doing so has given me the most improvement of anything to date - i have had more good days in a row than with anything else. Also FYI My dr told me i could do this 2 months ago but i had not done so because i was concerned due to reading on this forum that too much mestinon could cause crisis and because i wasnt sure if mestinon was causing increased weakness or illness itself. I now think it was illness getting worse, not mestinon. I also take timespan at night.

In interest of Full disclosure i had first ivig 10/28 and although was supposed to start monthly home teatment i am still waiting on insurance approval. At tht time of first ivig i was taking mestinon every 2 hours although because i would forget the time i was only tKing about 7 pills per day versus 10-11 pills per day now.

Of course, i am not suggesting anyone increase their dose without doctor approval.

Another fyi maybe true, maybe not but after 3.5 months of prednisone i think the only thing it has done is mAke me sad and fat!
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Unread 12-03-2012, 08:35 PM   #4
Quandry
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I was having problems with my dosage too. At first I thought I was taking too much, but because I was getting worse after three to four hours, I changed my dose (with my doctors permission) to every four hours instead of one pill (60 mg) every eight hours. I still have weakness, but not as bad. I even tried a dose every three hours, but I became weaker. So, I went back to taking Mestinon every four hours.
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Unread 12-04-2012, 06:59 AM   #5
alice md
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mestinon is very helpful for most patients with AchR "classical sero-positive" MG.

It can make things worse for some patients with rare types of congenital MG.

It can be very unpredictable and overall not very beneficial for most patients with MuSK MG.

So, your response to mestinon will first and foremost depend on the type of MG that you have.
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Unread 12-04-2012, 08:39 AM   #6
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What about sero negative people?
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Unread 12-04-2012, 09:24 AM   #7
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I'm not sure I have the following right, so please take with a grain of salt, and correct me if I'm confused...

Seronegative MG doesn't mean there aren't antibodies; it just means that the doctors and lab technicians haven't found them.

I can think of two reason why a person with MG would test negative for the antibodies: because they're there, but not in the blood at the time of the test; or because they're there, but they're not the kind that the tests are looking for.

The two best known antibodies that cause MG are AChR and MuSK, but there are several others that we know about. It seems likely to me that there are many other kinds that we don't know about yet.

So "seronegative" doesn't describe the MG, really, just like a UFO isn't "unidentified" in itself. It's something, all right. We just don't know what. The title just expresses the testers' ignorance. It doesn't describe the disease itself. "Seronegative" is a misnomer. It should be called sero-unidentified MG or something.

I have seronegative MG. I was tested three times for the AChR and once for MuSK (and once for LEMS, too). I don't respond to Mestinon, and my symptoms are atypical (almost no eye involvement). My best guess is that I have an antibody that hasn't been discovered yet (or one of the exotic ones that aren't normally tested for). But who knows. I think I am responding to the immunosuppressant drug I'm on (Imuran), so that's an indication that the problem is an antibody.

Abby
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Unread 12-04-2012, 01:23 PM   #8
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"seronegative" basically means that we don't know which type of MG it is.

It can be AchR, MuSK, or any other (including congenital and not yet recognized antibodies).

The response to mestinon is the result of the underlying mechanism, which is different in AchR and MuSK.

The mechanism is obviously not known in a not yet recognized type of MG.
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Unread 12-04-2012, 02:04 PM   #9
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"seronegative" basically means that we don't know which type of MG it is.

It can be AchR, MuSK, or any other (including congenital and not yet recognized antibodies).

The response to mestinon is the result of the underlying mechanism, which is different in AchR and MuSK.

The mechanism is obviously not known in a not yet recognized type of MG.
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