[Kasper1014]

I have recently been diagnosed with MG and was started on Mestinon. My Neuro wanted to start with 30mg twice a day, next day 30 mg three times a day and today I started 60 mg three times a day.

First day- 30mg twice a day- I really couldn't tell if the Mestinon was working. But after 4 hours, I could feel the med wearing off, I felt worse.

second day- 30mg three times a day- An hour after taking the Mestinon, my "lump in my throat" feeling would disappear, to return after 4 hours when I could feel the med wearing off. I also noticed that about 2 hours after taking Mestinon, I felt more awake. Still my muscles felt tired...I but I could feel a little more energy. My eyes are still crossing and I still see double vision with out my prism. Darn! LOL

third day- 60 mg three times a day- An hour after taking Mestinon, my tongue feels heavier and a little wider...but, I feel fine! 2 hours after taking mestinon, I feel more alert, a little more energy....muscles still fatigued and my tongue still a little heavier...

So, is the heavier tongue a side effect of the Mestinon? I have only taken the first dose of the 60mg....I will take my second dose around 3:30pm.

This is all new to me, and while there is info on the internet about MG and Mestinon...I couldn't find enough info regarding Mestinon side effects.

Thank you all for reading this and any info that you can provide.

[suev]

Hi Kasper...Welcome!

There is a great group of folks here - most with more experience than me. As you will find, Mestinon (and indeed the MG as well) is never exactly the same day in and day out.

Mestinon only lasts 4 hours and kicks in about 20 minutes after swallowing (pill). The side effects of too much are about the same as when you have none. The weakness and heaviness isn't improved and may be worse.

Each of us has to find what works best. Keep some notes and share with neuro. Don't make any med modifications without your neuro approving. But if you consistently feel worse an hour or so after the 60 mg dose - - and better as the pill wears off, then I would call neuro with that info pretty soon. He may want to adjust dosage.

Glad you found this site...but sorry you have MG!

Sue

[Kasper1014]

Thanks Sue! I am glad I found this place also. Not that I am happy to have MG....I am just glad it wasn't a brain tumor or MS. Now later, I may feel different.

I did notice that the heavy tongue feeling did disappear....and now that the med has worn off, my tongue os feeling heavy again. I didn't realize that Mestinon is such a short lived medication!

Today during my full dose....I noticed for the first time that my eyes didn't cross while wearing my prism. Without my prism, I am still seeing double....so that hasn't changed...yet. But it least it wasn't crossing WITH my prism.

My crossing of the eyes and double vision was what brought me to the Dr in the first place....othewise, I was able to explain away all the symptoms...haha

I am really glad I found this board. And I am also from Texas!

[Pat 110]

Hi Kasper,

Welcome to the group! Sounds like Mestinon is working well for you and in time you may find your eyes improving more as well. Everyone reacts a little differently, some a lot, to mestinon. You may have to work up to a higher dose a little more slowly. Your neuro will be able to advise you on what you should do. Be sure to tell him/her of any new symptoms, no matter how small they may seem. Do you see a neuro ophthalmologist in addition to a neuro? Take care and keep on posting!

Hugs,
Pat

[Kasper1014]

Thank you!

I am seeing a pediatric opthamologist and a neurologist that specializes in MG.

I do have a name of a top notch neuro opthamologist if I need him.....but I am taking a wait and see approach. My health team has been awesome and listen to me and take all my concerns very seriously. And hopefully this remains to be true.

I am keeping a journal of how I am reacting to the med. I am going to talk to my Dr also about maybe taking smaller doses, but more frequently...I can feel the Mestinon wear off right at about 4 hours....I didn't realize how bad I felt until the med wears off!

Thanks everyone for the welcome! I know I am going to learn so much here!

[rach73]

Welcome to the group. They are a great group of people here, that you will find supportive and caring whilst you are adjusting to the crazy world that is MG!

They are also great if you have been ill for sometime.

Keeping a journal is a great idea and helps you pinpoint how the medication is working for you.

You may find like me that somedays you need 30mg of mestinon and other days 90mg. It all depends on how you are doing.

Keep us posted on how you are doing

Love
Rach

[DesertFlower]

Welcome! Here is all the info I can think of about my experience with Mestinon. I hope it helps.

I take 30 mg of Mestinon 3-4 times a day every 4 hrs (none at night) and it works wonders for me.

It took 5 months of Mestinon for my double vision to become rare instead of constant. Part of the reason it took so long was that 60 mg gives me double vision/dizziness/nervousness so now I only take 30 mg at a time. I started out taking 60 mg 2 times per day and I was having major ups and downs every day with my energy, it was terrible.

Here is how my bad experience with the 60 mg doses felt:
1-About 20 minutes after taking a pill I was nervous and dizzy with double vision and actually thought I had something mentally wrong with me because the nervousness was so extreme I avoided people, including the phone, for about 1 hr. But at least I could do something besides lay in bed, so I was happy with the results even with the side effects.
2-After this initial craziness wore off, I felt pretty good for about 2 to 3 hrs, then this faded by the 4th hour. When the Mestinon effect wore off I went to bed most of the time, some days I was able to function for longer but I was exhausted.
3-I took my second dose at various times trying to figure out the best time, but the dizziness was worse with this second dose of the day and also included muscle cramps. My doctor decided that I should only take a second dose every other day instead of daily. When I took 2 doses in a day, I had a hard time going to sleep and was staying up late not doing much since I had bad double vision. On the one dose day, I planned my day knowing I would be in bed by the early afternoon. I was still happy with this, since again it is better than laying in bed all the time, but I had a lot of bad days due to the ups and downs from too much then too little Mestinon. Yuck!

After lots of research and insights from people on this website I learned that I most likely was taking too much Mestinon and talked with my doctor about 30 mg doses. He didn't like the idea of cutting the pills in half (and I still can't figure out why, he didn't have a good reason but insisted it wasn't a good idea!) but he finally gave me permission to do so (I gave him lots of facts and I insisted on facts from him and in the end he had none to support his 60 mg dosage only). Finally, and just recently I have figured out what works best for me.

I noticed that Mestinon only works for 4 hrs whether I take 30 or 60 mg. Taking Mestinon every 4 hours makes me feel almost normal again.

Everyone is different with what works best for them.

Remember that too much Mestinon call feel almost the same as not enough.

Talk with your doctor before you adjust your dosage. Remember that the doctor can't always understand how you are feeling but that YOU are right about how you feel. The doctors don't have to live with the results of their doctoring. I would probably still be on my miserable 60 mg Mestinon schedule if it wasn't for me (which in the beginning I thought was wonderful after having MG without Mestinon-which is what my doctor was trying to explain to me as his reason for not splitting the pills in half).

I feel like I have to say here that my doctor has been very good in all other aspects and overall I am very happy with him.

Drink lots of water! Your body needs more water to absorb the Mestinon and extra water helps avoid some of the side effects of Mestinon.

The journal idea is great at least until you figure out what works best for you.

[Kasper1014]

Thanks everyone!

My experience with mestinon today....pretty strange.

First, this morning I had my fasting blood work. So I had nothing to eat or drink since the night before, except sips of water. I did take my Mestinon this morning before leaving for the lab. And hour and a half after taking the medicine, my words were slurring...I had a hard time getting some words out. However, I felt fine! My breathing was normal, my heart rate was normal and my "lump in the throat" was also gone. Finally my speech returned to normal after I finally got some breakfast.

I took my my next dose around noon. By this time, I had food in my stomach. Everyhour, I was documenting how I was....and I was fine. Even though I still felt tired...I didn't have that exhausted feeling. And my speech was fine.

Again with evening dose....I was fine!

I can still feel the meds wear off after about 4 hours. That seems to be the norm for me.

Tomorrow, I am going to eat breakfast before taking the Mestinon. And I will see whether my words slur or not.

This is really frustrating! Haha

Thank you all for even just listening to me!

[Kasper1014]

I think I found a connection.

If I do take my Mestinon on an empty stomach...an hour after taking the med, my speech does slur.

Today I ate breakfast before taking my morning Mestinon. And never once did my speech slur.

So, I will from now on, start eating breakfast.

I guess it has to do with the absorption rate...I am just glad that food solves that problem.

[Joanmarie63]

Welcome Kasper, I am glad you found us here and wow, lots of Texans in this group {not me} I always have to eat a little something when I take my mestinon, even if it is just a few crackers, I too learned through trial and error. Thank goodness for this site and all the support and friends you will find here.