Here are some links that may help.
http://mestinon.com/
http://www.drugs.com/mtm/mestinon.html
http://www.fpnotebook.com/Neuro/Pharm/Mstn.htm

Maybe we should all write our experiences with Mestinon.

For me, I can't take a lot of it due to it causing me horrible GI problems. Diarrhea became my life So, I was given Welchol to help conteract the effects, and I'm down to 1 to 2 pills daily of Mestinon.

When I'm close to the time when I usually take Mestinon, I can feel my muscles start to feel weak. I even get little eye twitching, and a tad shaky feelings, which calm right down once I take a mestinon pill.

I usually can't sleep without a Mestinon. It helps my breathing at night. And boy do I notice the difference in my breathing when I don't take it.

I can't think of anything else.
Love Lizzie

Well, it is TIME for my SECOND Mestinon pill of the day -- so, I can tell you what symptoms are most prominent right now:
*fatigue
*MAJOR slurring of words
*leg heaviness
*shoulders and upper arms are VERY tired
*fingers are slipping all over the computer keys

But, by FAR the WORST symptom that I WILL have IF I don't take a pill soon IS -- I will CHOKE on my lunch. So, I'm gonna go get my Mesty -- put it under my tongue to let it dissolve and get into my system -- and get something to eat.

I HAVE, upon occasion, FORGOTTEN to take a pill near mealtime (space-cadet here!!) and as SOON as I start eating, I am VERY quickly reminded that I DO have this beast called MG. The MOST fun is drinking tea and having it come out through my NOSE -- eeeeeekkkkkkkkk!!! NOT a pretty sight!!

I cannot drink liquids by tilting my head and sipping from a glass. I have to use a straw and keep my head at a normal angle. My lips are affected by MG, so it is difficult to hold onto the straw -- I do this "thing" with my lip and teeth. Whatever works, huh?!?!?

I like the Mestinon -- I used to have MAJOR constipation -- I am now REGULAR -- woooo-hoooo!!! (Yes, I know I'm weird!!) I do get some cramping with the first pill of the day -- not any worse than the Irritable Bowel that I've had for years. I can deal.

BTW, AWESOME idea for a thread, Lizzie!!!

I never knew about putting Mestinon under your tongue...... I always swallowed mine..... anyone else do it that way?

I never heard of the mestinon under the tongue either but it makes sense, I am going to try that in about 10 min

I take Mestinon syrup, due to my lack of stomach acid. It absorbs better than the tablets for me. It also goes to work a little more quickly.

I am on 90 - 100 mg. every three hours, round the clock.

Using an "under the tongue" drug, like sublingual methylcobalamin or nitroglycerin, is useful for a couple reasons. One, it goes to work quickly. Two, it goes directly into the blood stream and bypasses the GI tract for those with GI issues.

I don't have any side effects of Mestinon. Probably because I don't have stomach acid (if you want me to explain that, I will). I have had to go off of Mestinon for testing. When I go back on, I take the full dose. Nope, no side effects then either.

Mestinon also increases peristalsis. Peristalsis is how food is moved through the GI tract. It involves MUSCLES. The weaker them muscles, the slower food moves through. That's why on most bottles of Mestinon, there is that little sticker that says to take it with bread or crackers if it upsets your stomach. Carbohydrates "stop up" the GI tract.

Symptoms off of Mestinon depend upon the day (what muscles I've been using and for how long) and time of day for me. I sometimes choke when it runs out. Don't even need to see a clock to know that my 3 hours are up - actually my 2-1/2 hours since that's when it runs out. I am noticeably weaker and short of breath.

This is a good idea, Lizzie. Everyone has slightly different experiences with Mestinon.

Annie

The Mestinon works in a rather strange way for me...

First, the regular tablets don't seem to work at all...I have to take the time-release tablets to get any effect...

I also don't experience the GI side-effects...I sometimes experience them with the time-release tablets, but I always take both with food, so this might be why...

I went to the pharmacy today to get my rx for the time-release, and it turns out that my neuro. sent a fax saying that I should be taking time-release once a day and the regular tablets 4-6 times a day. I'm so upset. I already told them that the regular tablets don't work for me, and they told me to take the time-release tablets twice a day.

The pharmacist seemed taken aback by how bad my speech and breathing are...I could barely eat...only had oatmeal, and I had to move it around in my mouth with my finger in order to chew and swallow it. My face is so weak, and everytime I say a word, I wheeze and suck in a breath...It's like my lungs are stuck...My symptoms are so bad right now because I ran out of the time-release tablets...She said that she will call my neuro. herself to tell them that I need the time-release...

I hate this disease.

I'm new to this site, but I have been dx with mg for 3 years. My symptoms were so bad by the time I got a diagnosis that I was almost wheelchair bound. Finally after the 3rd neuro I was diagnosed.

I take high doses of mestinon 180mg 3 times a day 2 60mg short acting twice a day, I can't take the prednisone because it makes me psychotic.

Even with all of the mesitnon my symptoms are getting worse by the day,I used to have weakness in just my legs but now I feel through out whole body my mouth gets tired if I chew something for to long, I'm starting to have trouble breathing, my balance is way off.

So I need to go back to the neuro for a check up and see I need a med changed.

Has anybody else experienced the same after being on mestinon for a while?

Thanks Renee

Hi, Renee! Welcome. Another Floridian. How do you guys take that heat?

I've been on Mestinon for almost nine years. It has a bit less impact but still "works" for me.

There's always the possibility that something else could be making MG worse. The obvious culprit usually is the thyroid. There are other possible reasons. Do you have a good primary doctor too? It might be good to check with your neuro and them.

And do you have a pulmonologist? If you are having trouble breathing, you really should be assessed by a pulmy. Neuros don't do that nor do they have the equipment to do it! My pulmy has standing orders for MIP and MEP (neuromuscular specific breathing tests) to be done if I get worse. It's a great arrangement that every MGer should have.

Sometimes the Timespan can "overdose" you, making you weaker. The time release is not "perfect" and you can get too much at the time you are taking the other dose of regular Mestinon. Just a thought.

I hope you can figure out what's going on. What about IVIG? Is your neuro an MG expert? If not, there is one in St. Petersburg.

Annie

Lizzie - I would love to hear the all the details for what everyone experiences with mestinon.

I take 1 1/2 to 2 of the 60 mg pills every day.

Without Mestinon I would be stuck in bed almost all the time not able to read or even roll over. Mestinon is my life saver!

I have noticed that when I take my morning 60 mg pill, I have to relax for about 1 hour since sometimes it makes me dizzy or shaky like I drank too much coffee (did someone else say that Mestinon makes them feel like this?) After talking to my doctor, he said to spread the dosage out more during the day, the only thing he stressed was to take the SAME amount every day.

Today I am cutting all my pills in half and taking 30 mg every 4 hours during the day (I don't need Mestinon at night). This morning went great, no dizziness or shaking and otherwise I feel like I took the whole pill. Taking my next 1/2 pill now since I am starting to feel week (exactly 4 hours since first pill).

I have always been sensitive to medicines and need less than the average person so I think this smaller dose will feel better for me.

Also, if I take 2 pills every day then on or before day 5 I get twitchy muscles and I have to stop. 2 pills daily is too much for me so I only take 2 pills on my weak days and no more than twice per week.

Water is important for me to drink with Mestinon. If I don't drink plenty water I get stomache cramps and painful diarea and also stiff hands due to dehydration. Yesterday I didn't drink enough water and I have been regretting it terribly (staying near bathroom today and yesterday afternoon). Mestinon usually doesn't give me diarea (Note to self - drink extra water today and every day!)

I am still working out the best times to take Mestinon.

I found out that pills taken in the evening will keep me awake for about 4 hours afterward. When I first started taking Mestinon I took one in the morning and one in the evening 12 hours apart (6 am and 6 pm) and I couldn't sleep until 10 or 11 pm. After about 1 week I got the overdose symptoms of twitching, tight muscles and muscle cramps (scary!) and had to decrease my dose. It was such a relief to be able to relax and sleep after that experience. I almost did not want to take Mestinon anymore.

I feel like I am just rambling. I suppose I am just sharing any experience I can think of concerning Mestinon. I hope it is helpful to someone.

I hope everyone is feeling good today.