I would be interested in everyone's replies on this too, as I am playing with my mestinon dosages trying to figure out if the symptoms are from too much or not enough.

Hi. Im really sorry youre feeling all of that. First of all what I understood from the neuro we see is that the moment you have excess saliva you need to call him/her immediately as that is due to swallowing problems which can be dangerous. Another thing I would suggest is to ask your doc about your dosage and see what he says. In my humble opinion thats a bit risky to decide for yourself.Hope this helps:)

From all that I know, excessive salivation and muscle twitching are definitely overmestinon sx. I have not heard of either of those for under use of mestinon. The other things to watch for in overdoing it are diarrhea and muscle cramps.

You can have muscle weakness from overdoing mestinon too. In fact, overdoing mestinon looks a lot like undoing it. That is why the medical profession is concerned about not being able to tell the difference between a myasthenic crisis and a cholinergic crisis solely based on symptoms. Don't mess around too much with your dose. Your neuro should be on board with how much you are changing it.

debra

I agree with the others that you should check with your neuro before changing your mestinon dosage.

RE: whether you're taking too much Mestinon and the side effects are too much... it's a tough call. I don't think the saliva and muscle twitching are necessarily a sign of "overdosing" (though they can be). They are definitely side effects of Mestinon, but, some neurologists will prescribe hyoscyamine or glycoppyrollate to block the side effects of Mestinon (excess salivation, stomach cramps, diarrhea, etc) so that patients that need it can take higher doses of Mestinon. Some neurologists disagree with that and prefer to not use one drug to block the side effect of another drug (but still prescribe it). I fall into the category of patients needing the hyoscyamine to block the Mestinon side effects so I can take as much Mestinon as I need to keep me going. Do you take anything to block the Mestinon side effects? If not, you may want to ask your neurologist about trying either Hyoscyamine or glycopyrrollate so that the side effects don't keep you from being able to take as much Mestinon as you need. (and, yes, I know that the warnngs on both of those drugs say that people with MG shouldn't take them, but they also say that people with MG can take them if they are being used to block the side effects of Mestinon).

As for whether you are overdosing on the Mestinon and experiencing a worsening of your MG, do you notice that your MG symptoms get worse within 30-45 minutes of taking the Mestinon and don't improve until 3 hours or so after taking the Mestinon? That's how we figured out I was on too high a dose at one point last year - at 120mg, my MG (double vision, difficulty chewing, weak arms) got significantly worse within 30-45 minutes after taking the Mestinon, and significantly better 3-4 hours after taking the Mestinon. At 90mg, it was the exact opposite - I had improvement within 30-45 minutes of taking the Mestinon, and worsening within 3-4 hours after taking it.

RE: excess saliva being a sign of problems, I think the issue is more that the saliva builds up in your mouth because you can't swallow it, not that the Mestinon is causing excess salivation. In that case, it's definitely time to get in touch with the doctor (or past time). I ended up in the hospital because I couldn't swallow anything, and believe me there was LOTS of saliva in my mouth. They gave me a spit sucker like at the dentist, and that thing was my best friend. :)

Hey there,

I may take more Mestinon than most people around here because I take 90MG to 120MG if I am very active at times of Mestinon every 5 hrs(I take 90Mg and then like 2-3 hrs later 30MG) and 2 Mestinon TImespan in my mornings(9AM), one in the late afternoon(3:30) and one at bedtime. It usually totals about 900MG daily, and sometimes just over 1000MG.

Excessive salivation is a side effect of mestinon, and doesn't mean you're overdosing I would say. If it were really excessive and constant, than perhaps. When I was messing with my dosages, I had runny nose when I had too much, along with the constant salivation I mention at times also. It can be difficult to figure sometimes, but you should know when it is too much spit, and make sure something isn't stuck in your throat or something else isn't causing you to have a lot of saliva. Muscle twitching in my legs or other is not something I have experienced. I have had a night waking up yelling due to a cramp in my leg once though. I had no bananas for two days prior and try to eat them and potatoes. I I had to adjust into my schedule, and I do not deviate far from it. Sometimes I go 6 hrs between mestinons and sometimes I do not take my afternoon timespan. The doubled morning Timepspan really kicks my day off well, I feel. I take this schedule above along with Cellcept at dinner and breakfast. I feel it has been going pretty well.

Do not EVER exceed more than 120MG of Mestinon in a 4 hr period, and you should not be clinically overdosing from what I know. I think because the timespan I take breaks down over a period of time and not at once is the reason I can follow this way. I hope Mestinon will always work for me. It is my crutch, it really is.

More on mestinon:

http://en.wikipedia.org/wiki/Pyridostigmine

Be well Christo, and as always we are all here for you!

Peace,

TJ

I wonder about this too -- when I was first diagnoses and got the mestinon, it worked really well, but it seemed that the more I would take, the worse I would feel after the stuff wore off. Perhaps it was because I was just diagnosed and it came on so fast...

But I also wonder if the Mestinon aggravates the immune-response problem that is the root of MG --

I'm also worried that mestinon sometimes stops working on some people when the receptors get burned out. So it might be better to be conservative in your use -- and take more naps. Anyone have any feeling about that?

But the MG is so episodic -- I also am feeling it more in my neck and arms and diaphram recently, but my eyes seem better. I could probably use more sleep and relaxation. Over the long term I believe I am getting better with the steroids.

Finally, I just can't get over the fact that I am always looking at my supply of mestinon and worrying about running out! I'm addicted!

I agree, it can all be so frustrating and we all hear different opinions from our neuros.
At present, I feel like my symptoms are less stable, fluctuating...my symptoms vary week to week, more so day to day... so I am having to adjust my dosage. I have been thinking that 90mg/dose may be too much at times (worsening symptoms, more saliva) and have backed down to 60mg/dose. I think it can trial and error to see what works for you. (Let me state that at present I am not having any dsyarthria problems so feel fairly safe in doing a little experimenting on my own)
This morning, I tried taking 1 timespan plus 30mg. It worked really well. I am trying to be aware of my changing symptoms and adjusting accordingly, I am starting tacrolimus (FK506) and hopefully can reduce the fluctuating symptoms and cut down on plasmapheresis.
~sherry

I firmly believe that once you find a regimen schedule that works for you, to stick to it. You may have a bad day in there, but realize what exacerbates your MG, including what you are doing(stress, hot temperature), and the foods you are eating especially. I cannot tell you how bad soda water, carbonated water, mineral or bubbly type water, lemon, lime, and anything with Quinine(all of those things have quinine in them) is for people with MG, and even moreso with Mestinon. It could very well be that over a period of time the mestinon seems to be less effective and that likely would be due to your MG progressing, not the mestinon becoming less effective. I will agree that in some cases and sometimes, less is more effective also. However, I would like to reiterate that I feel a consistent schedule is most beneficial, whatever your tolerance level for being most productive and comfortable is. Find it, and stick to it! That would vary person to person, and may depend on diet and the individual in general.

I've been on mestinon 4X60mg daily plus 180 mg timespan at night for the last 5 yrs. Diagnosed in 1991 and started 4X60 mg daily at that time.
I started off with days of excessive saliva, leg cramps, and feeling MG weakness in neck/arms/legs...but nothing like I experienced before being diagnosed.....my point.....it's early on for you.........stay the course you are currently on....mestinon OD will be quite apparent with bigger weakness problems.....you will know.......won't need to second guess....

Are you doing any other treatment that will help you need less mestinon ?(healing from a thymectomy, steroid treatment etc) Until I started Prednisone 5 weeks ago I needed more and more mestinon daily (2 time-release 180mg and 3-4 60mg pills daily just to function almost normal and sometimes that would not work).
I know Prednisone is not something everyone is fond of but I really felt like I had no choice (I need my speech to not be slurred so I can do my job as a teacher, need neck muscles to holdup my head and wanted to not look all saggy in my face/eyes). So I have tried that and now am able to start weening off of the mestinon and it is working. I went down to 3-4 pills in the first 3 weeks and now am down to 1-3 a day so I am noticing the difference.....and I do notice that if I have too much Mestinon I get the goofy symptoms and side effects. So it is still kind of a guessing game but I do feel like there is hope. The first 5 months after my thymectomy only made the symptoms go wild so I finally feel like I might be on the right track now. (helps by having a new neuro in Denver that is willing to try sometime other than just waiting for the tymectomy to kick in in 1-2 years).

@ likespurple
I am taking 20mg Prednisone a day, as well as recovering from a thymectomy that I had on the 13 of January 2011.

Hi Christo

The only way is to experiment with mestinon.
But do it in smaler adjustments like 5-10mg at a time.
mestinon has timed effect, so you should see effects within hours. It definintely won't take days to see an effect.

Although you could observe for effects over a few days after changing mestinon dosages to get a better idea of whether it was the mestinon that helped or one of the 'unknown fluctuations' in MG. Like make sure you're not just having good or bad MG day. Then you'll know it was the mestinon adjustment.

Regarding overdose: Once when i first starting mestinon last year, I was on 30mg. I tried 60mg instead of the 30mg once, and boy did I overdose! I didn't go into crisis or get seriuosly bad symptoms, but I was salivating like a rabid dog. Standing over the bathroom basin saliva streaming, I mean STREAMING, from my mouth. It lasted about an hour and then slowed down to normal.
I guess that time my MG was not so bad as now, so the overdose didn't make symptoms worse.

So exessive saliva due to overdose is more than just a little more than usual. It pours out of your mouth.

i get twitching muscles all the time, in my calves and lately on my forehead. yeah my forehead, that's great!
I beleive twitching is a side effect and not overdose symptom.

Adjusting dosages also depends on what time of day you feel weak. Is it in the morning? closer to evening?

I began to feel very weak in the mornings, worse than at night. At first I thought MG was gettting worse, but usually that would mean I'd feel worse in the evenings not the mornings. So I decided to take an extra dose in the middle of the night. As I thought perhaps the 8 hours in betweeen the evening and morning dose was too long. It worked!

But getting up at 2 thirty am to take pills was too much, and broke much needed sleep for MG sufferers. Now I take it at around 5am which is when I usually get up, and make sure that I take the nxt dose on time, which is actually at 6 thirty am. Then I'm fine till the next dose at 10am. Howver if i missed either the midnight dose or the 6am dose, I'd be weak the whole day no matter what.
Mestinon kinda works in a timed manner. So I can stretch the gap from evening dose at 9am to midight dose at 5am AS LONG AS I TAKE THE 6 THIRTY AM DOSE ON TIME. I don't know how it works but I guess it's something to do with the way mestinon is released in the body. And even though the 6 thirty dose is only 1 half hours after taking the 5am dose, I don't get any side effects. I guess it's coz catching up doses are ok. But not more than that.

Try increasing the dose at the time of day when you start to feel weaker. Like if you feel weaker towards evening, perhaps increase the dose in the afternoon. Try taking 90mg in the afternoon before the time of day in which you get weaker.

Hope this gives some insight. After experimenting I have mestinon down to a science for myself. Others will have different experiences. But it doesn't help a;lways. Sometimes all i need is a good forty winks.

Take care
Fatima