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-   -   Mestinon (https://www.neurotalk.org/myasthenia-gravis/226023-mestinon.html)

mj 09-15-2015 03:41 AM

Mestinon
 
Due to being sero-negative, I am currently without a dx. However as my symptoms are on the rise, it was determined that I would have a trial of low dose Mestinon to see its effect. I was started on 30 mg with b'fst and with lunch, then in 2 weeks I am to take it with b'fst and supper. Both the GP and the Pharmacist told me it could take up to a month to note effect. I have taken it for 3 days thus far with no effect on muscle issues. Does this sound reasonable? It sounds as though most people claim it works immediately. Thanks

juliejayne 09-15-2015 04:48 AM

Quote:

Originally Posted by mj (Post 1171105)
Due to being sero-negative, I am currently without a dx. However as my symptoms are on the rise, it was determined that I would have a trial of low dose Mestinon to see its effect. I was started on 30 mg with b'fst and with lunch, then in 2 weeks I am to take it with b'fst and supper. Both the GP and the Pharmacist told me it could take up to a month to note effect. I have taken it for 3 days thus far with no effect on muscle issues. Does this sound reasonable? It sounds as though most people claim it works immediately. Thanks

Mestinon... 30mg.? In which form do you have it. There are 10mg tablets, but they are often not prescribed. (probably too expensive).

But you only have to read the info sheet that comes with the tablets, to see that the advice from your GP and Pharmacist is rubbish.

Mestinon, takes effect in 30-60mins. If it is working you will notice the results. It lasts for 3-6 hours depending on who you listen too and on what you are actually doing. It does seem that the more active you are the faster it runs out.

My personal experience it takes 45-60 minutes to kick in, and it lasts for 3-4 hours.

Meech 09-15-2015 09:36 AM

I started on mestinon only a few months back, 30mg (1/2 pill) then worked up to 60 mg. I only noticed some improvement with my ptosis, but it's quick within about 35-40 minutes. Good luck.

mj 09-15-2015 10:58 AM

Mestinon comes in 60 mg tabs as well. The Neurologist is also in support of this theory...?

juliejayne 09-16-2015 02:15 AM

I do also have the 60mg pills. But they are sugar coated and would be impossible for me to break in half. Maybe other people have other versions.

I started on 30mg 3 times a day.... now up to 90mg 6 times a day

Marr 09-17-2015 05:36 PM

I'm new and taking 60 mg. of the generic form and it has perforation lines. My Dr. had me bring a few in half. I was to take the half for just a couple of days before I was then on the full dosage.

gemini711944 09-26-2015 11:10 AM

Mestinon dosage
 
Quote:

Originally Posted by Marr (Post 1171657)
I'm new and taking 60 mg. of the generic form and it has perforation lines. My Dr. had me bring a few in half. I was to take the half for just a couple of days before I was then on the full dosage.

Does anyone out there take 60 mg of mestinon every three hours?

juliejayne 09-27-2015 04:25 AM

I am currently taking 90 mg every 4 hours... but it depends on what works best for you.

Every 3-4 hours is the best option, as it only lasts between 3-6 hours in the body.

Most doctors stick to every 4 hours, or some say 3 times a day, which is very imprecise. But I think that doctors worry that we, the patients, cannot cope with simple instructions like "every 4 hours" so hope that 3 times a day will be with each meal.

mimc 09-27-2015 04:13 PM

I take 60mg every 2 hours and 45 minutes because it is wearing off if I wait until 3 hours. This way my strength remains pretty steady instead of up and down so much

davew41 09-27-2015 06:54 PM

I take 10ML every 3.5 hours up to 5X per day MAX..
OR in pill form
120MG 5X per day every 3.5 Hours, I am on the Liquid which is 60MG per 5ML

FREDH 09-28-2015 01:04 PM

gemini
 
Quote:

Originally Posted by gemini711944 (Post 1173626)
Does anyone out there take 60 mg of mestinon every three hours?

I take 2 x 60mg in AM, and 1 every 3 hrs after, up to 6 total. Still seems not enough. I am seeing Nuro Wed PM.
FREDH

scrubbs 10-07-2015 01:06 PM

Anybody ever have a negative effect from Mestinon? Like having a hard time chewing after taking it but chewing was fine before taking it.

juliejayne 10-08-2015 08:42 AM

Quote:

Originally Posted by scrubbs (Post 1176148)
Anybody ever have a negative effect from Mestinon? Like having a hard time chewing after taking it but chewing was fine before taking it.

Any other negative effects. Too much Mestinon CAN make the symptoms worse rather than better.

Depending on how much you are taking, try reducing the dose, and try to vary the time between taking it and eating.

If in doubt go back to your Neuro. But the better that you can document the correlation between meds and problems, the better.

GI6607 07-15-2016 07:27 PM

Just to show how powerful this drug is...in the first Gulf War the Army had us carry bottles of 30mg pills of Mestinon (pyridostigmine bromide) to use as antidote in case of nerve gas attack.

juliejayne 07-19-2016 02:41 AM

Quote:

Originally Posted by GI6607 (Post 1217205)
Just to show how powerful this drug is...in the first Gulf War the Army had us carry bottles of 30mg pills of Mestinon (pyridostigmine bromide) to use as antidote in case of nerve gas attack.

LOL Shows how little they knew back then.... If you had been attacked by nerve gas it would probably have been too late to take the Mestinon.

Kimo 07-19-2016 02:54 PM

Quote:

Originally Posted by juliejayne (Post 1217509)
LOL Shows how little they knew back then.... If you had been attacked by nerve gas it would probably have been too late to take the Mestinon.

In fact Mestinon was used as a pre-treatment for exposure to Soman nerve gas. It had to be used before the fact and was used in conjunction with the usual antidotes such as Atropine. It was found to increase the survival by a significant amount. (In rats anyway)

I assume if a unit was going into an area where the nerve gas was expected the troops would be instructed to start taking the Mestinon beforehand.

Mw40love 07-20-2016 09:04 PM

I take 30 mg every 4 hours. Even at night. I have to wake up to pee once a night anyway. It helps me sleep better because I can breathe. Take one before bed, one four hours in, one upon awaking. Of course I say I am taking one, but I am really taking half of one. I would never survive on 3x day and mine kicks in in 30 minutes.
Ask your neuro to schedule a tensilon test.


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