I'm looking for input.

I'm taking Mestinon 30mg/ 3times a day. Its been five days.

Wearing off - seems to wear off after 3-4 hours? Why would it say take at least 6 hours apart if it wears off after 3-4 hours?

How soon after your first dose do you notice it working? I think I noticed improvement within the first hour. All my symptoms improved.

Side effects - fatigue after about 2hrs of taking a pill. I've been thinking this is me not getting good coverage. Or is that my body getting used to the medication? After taking the next dose seems to make it better.

Sticking my neck out there again....
Love this group.
Thanks,
Jen

Most of us take 60mg 4x a day plus a 180mg time release at night. Your Neuro may be working you up to these levels. Your symptoms may be mild. Mestinon (60mg) usually lasts us 3-4 hours. You should see some improvement within 30 minutes after taking.
Mike

Thank you, Mike!

What do you mean by "working you up to these levels?"
Is there an issue with working up too fast? Or taking too much too soon?


Jen

H Jen - Mestinon does have some side affects for some people. They are generally not permanent, but they can be uncomfortable for a few hours. For me, if I take it closer than 3.5 hours apart, it affects my GI tract with horrible cramping and diarrhea. If I keep it about 60 mg every 3.5 to 4 hours, I don't have those problem. However, as with everything else with this disease, it is different for everyone. I do use the 180 Timespan at night and if I somehow forget it (senior moment!), I really notice it the next morning. I can hardly get out of bed and will delay my shower until my morning mestinon takes affect.

Good luck with finding what works best for you!

Juanita

Hi bizzymum42
I too am a newbe to this forum, ocular Myasthenia and Mestinon. I have been on it for five weeks 30mg/3times a day for a week, then 60mg/3times a day. Like you, they only last 3 or 4 hours, so time the dosage to suit your lifestyle. I take the last one around 6 pm. Improvement started for me the same as you described. But hang on in...it does get better once your dosage is sorted to your needs. i read on this forum about caffine being a help and it is... so dark chocolate and coffee. Keep smiling.

I have been on mestinon for about 2 years now. I take 60 mg with breakfast and 30 mg 3 more times during the day and evening with the last one at bedtime. I tried the time span for about a week 2 years ago and it made me feel drunk so I do not take it. If I take more than 30 mg at a time other than in the morning, my eyelids starts twitching and I can get slurred speech and feel a little weaker so I only increase from 30 mg if I feel really weak. Hope this hekps.

Thanks! I got an increase today to 60mg/ 3x per day. I'm hoping my neurologist knows the "suit your lifestyle" thing and isn't a stickler for 3x/day. I haven't had the chance to talk with her yet (just talking to her nurse). Very pleased with how well this works so far!

What is the purpose of taking Mestinon Timespan for ocular myasthenia prior to bedtime? Afterall I am sleeping, not reading a book. What is the benefit? Am I missing something here?

Most people that take mestinon at night do it because they have generalized MG. We take it so that we can breathe.

Hi Jen,
So you are now on 60 mg Mestinon 3 times a day. If it doesn´t fit your needs, there should be no problem to take Mestinon 4 hr apart as most of us do.
Neuro´s are usually cautious with newbees and increase the dosage slowly but you will quickly learn to listen to your body and adapt your dosage according to your activities and condition.
Be always cautious and modify only one parameter at any one time and I you don´t feel well, go back to your previous dosage.
Working with the time interval is always preferable to modifying the dose which you should not do without your neuro´s approval, but increasing the frequency to 3 hrs or 3.5 hrs is ok.
When you modify something and find yourself better, keep your neuro informed so he knows how you react to medication.
And for steelworker, time span is for MG´ers with generalized MG (general muscle weakness), as southblues said, so that they can breath during the night, swallow their pills in the morning, have a normal breakfast and then live through the day with normal mestinon.
I hope this will help you build safely your own experience.
Maurice.