I have a question for any who would like to answer. As an MG patient I started out with a dosage of 3 x 60mg a day. I later had more problems, and today I take 5 x 60mg a day. I was still having droopy left eye problems that my Nuro said there was probably not a good answer for.
Anyway, it was finally suggested by my Nuro, to take 2 60mg tablets in the AM, and the rest about 4 hours apart.
My eyes are much improved so far and hopefully will stay that way.
Has anyone else been told to take 2 x 60mg at once, and then space the others out,if so what were your results. Positive or negative.
Would like to hear your ideas on this
Thanks --FREDH

No, but thinking this through logically.

On 5 x 60mg, you were probably taking your last dose late at night. Since the average effective time period for Mestinon is 4 hours, by the morning you were "empty". Taking 60mg when you wake up, was not quite sufficient, and so you were always a little behind throughout the day.

By taking 120mg first thing in the morning, you get enough for your eye to be ok. Throughout the day your level would be dropping, but it seems enough.

The 4 hour working period for Mestinon is an estimate. A more accurate estimate is 1.75 hours halflife, so that if you start with 60mg after 3.5 hours you are down to an equivalent of 15mg. So starting with that higher dose, keeps you that little bit higher through the day.

juliejayne,
That is the same way I figure it to be happening. At least it is working now, hope it continues.

My Dr. Prescribed 3- 60 mgs 2 times a day. That was too much and had real bad side effects so I dropped down to 2 1/2 60 mgs my eyes would hurt a little so I dropped it down to 2 1/4 - 60 mgs 2 times a day. My dosage is 145mgs when I get up and 145mgs at about 12 pm that will carry me till morning.

I take 3 x 60 during day and one 180 SR at night. Seems to keep me regulated

Hi jvaagen,
Your dosage is quite unusual.
Mestinon effect lasts about 3 to 4 hrs.
Have you tried to reduce the intakes and reduce the period between them?
Maurice.

In order to make it through the day I need to take 120 mgs minimum but still have limb weakness. The 12 pm dose does carry me till morning but also have limb weakness but I limit my activity from 4 pm till 8 am. I miss calculated it's 135 mgs 2 times a day.

Ditto on what Maurice is saying. A higher dose isn't necessarily better.

Mestinon does run out within 2-1/2 hours of taking it. It kicks in after about 30 minutes of taking it. So you are left with two good hours of increased acetylcholine getting to your muscles.

Speak to your neuro about this. Some people do better on a consistent dose throughout the day. Everyone is different and it might take some time to find the right balance for you!

Annie

The right balance... I have seen this mentioned many times. Can someone explain what is meant by this.

I started on 30mg 4 times a day, and the effect was wonderful.
But it didn't last, within 4 months I was back to where I started.
Increased to 60mg 6 times a day, the effect was a great improvement, but not so much as when I started on 30mg.
But it didn't last either, within 2 months I am back to where I started.

It feels as though I am running to try to keep up with an express train that is gaining speed faster than I can. How do I get the right balance.

I was taking Pyridostigmine 1/2 a 60 mg tablet 2 times daily but the symptoms were too strong for my body to handle. I even cut down the pill to 1/4 but got even sicker. Turns out I'm allergic to it. I haven't been diagnosed yet for MG but my doctor wanted to test it out on me. To see if it could help me.


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