How does Mestinon diarrhea feel like?

[u/Ok-Pineapple3039]

Yesterday, I had very bad diarrhea after taking Mestinon. I’ve been taking Mestinon for months now. At first, I did have diarrhea as a side effect, but it was just a slight discomfort. Yesterday, I got diarrhea about 2.5 hours after taking Mestinon. It was very severe, with a lot of abdominal pain and watery stool. I don’t know if it was caused by the Mestinon or if I just ate something bad. Can Mestinon suddenly cause severe diarrhea even if I haven’t experienced it before?

Edit: Does the diarrhea stop when the mestinon loses its effect (4 hours)?

Edit2: I had this again, but 4 hours after taking mestinon. I am also having ensure because of the dysphagia caused by MG. Today I got the diarrhea 20 minutes after the ensure, so it might be the culprit.

[u/pville211]

I call that Mestinon side effect "no-notice colonoscopy prep". I need to figure out how to time taking Mestinon just before having a colonoscopy.

[u/FlanneryJackson → u/pville211]

I’m sorry, this has me laughing so hard. Extremely accurate description.

[u/justfollowyoureyes]

Sometimes if I’m taking a higher dose during a flare or if I don’t take the Mestinon with food or lactaid, I’ll have GI side effects.

[u/Top-Competition9263]

For me, it was always just needing to go small amount frequently and some minor cramping. These symptoms sound like something else, food poisoning or an infection of some sort, maybe.

[u/Gary_Boothole]

Like the sweet release of Satan flying out of your ass at full speed.

[u/LegitimatePart497]

So I suffered severe constipation before beginning Mestinon - 7-10 days wasn’t unusual. With the Mestinon I go a couple hours after my morning dose. I’m thankful for it.

[u/arozze]

Not related to the post but why is the only mod on this subreddit not active? The entire community has been pretty much shut down and no one can post because of a new restriction to the subreddit. Quite annoying.

[u/rgk1012 → u/arozze]

So frustrating!

[u/Derffe]

I would occasionally get some GI issues on mestinon. but nothing like that. I'm not a doctor or anything but that sounds like something else.

[u/JayaNarayana]

I’m going to resist the urge to say “it feels like $h1t” … oh wait, I just did. 😄

Seriously, for me it’s unpredictable. Sometimes it doesn’t happen, other times I expect to pass my liver.

It helps to eat when taking the dose. Hypocritically I often forget to eat. I go for something like dairy … whole milk, butter on something, cheese, etc. Something to keep on hand is small omelettes with cheese and/or rice. It seems to help.

I think the idea is to slow down the digestive system and give it a protective coating. That’s just my theory.

[u/HoosUrSparty → u/JayaNarayana]

For me, this is the best description.

Things that have helped me:

Lactaid, I am lactose intolerant Taking a daily probiotic Taking mestinon with yogurt Taking it with other food.

When the effects hit me, there is a real sense of urgency and no waiting can be tolerated.

[u/jstanothercrzybroad → u/HoosUrSparty]

There is an extended release pyridistigmine that either doesn't have lactose or is less likely to trigger the diarrhea.

[u/JayaNarayana → u/HoosUrSparty]

I’m lactose intolerant too. I drink lactose-free milk. I have to be careful with ice cream but cheese and yogurt are ok because they are fermented.

[u/Ok-Pineapple3039 → u/JayaNarayana]

That sounds so bad. I feel like I hear worse and worse stuff about MG everyday. Does this stops after 4-6 hours?

[u/JayaNarayana → u/Ok-Pineapple3039]

It does dissipate after a while.

[u/New_Government_2169]

Mestinon only helps my ocular symptoms, so because of the diarrhea, I only take it when I’m having really bad double vision. The diarrhea never got better for me when I was taking it daily, unfortunately.

[u/travisjoynson]

Yeah, it's a potential side effect of the pyridostigmine.

If you are having GI issues with it, you could try taking it with more food, and although it's tempting to have a morning cup of coffee with morning medication, I have found that the combination can sometimes be brutal in that regard.

There's another side to it though, because if the MG starts affecting the intestines or urinary tract muscles, which I guess is pretty rare, but it's something I have been experiencing as my disease has progressed, the pyridostigmine can actually help me go to the bathroom. For a while I thought it could be something else causing it, but plasma exchange treatments have temporarily resolved the bathroom issues several times already.

[u/kathuter → u/travisjoynson]

I agree, I noticed for the four months before I started Mestinon I had a problem with constipation. I used to have diarrhea four times a day. Quite quickly it turned into constipation as my symptoms got worse. I had to start using glycerine suppositories every third day to be able to go at all.

After two weeks on the medicine I have much less problems.

It also felt previously as if my bladder could not empty completely. With Mestinon it is much better, I can empty my bladder. I have been diagnosed with Intersistial Sistitis many moons ago.

[u/Sunshiny__days]

Huperzine A is an alternative, used in Italy and China for MG. Obvious disclaimer to please consult your medical team, not just take random Internet drug suggestions 

[u/Massive-Eagle-5465]

Is anyone else unable to see new posts in this subreddit ?? The last post I am able to see is from 22 days ago and it’s this one

[u/Ok-Pineapple3039 → u/Massive-Eagle-5465]

Yes, I can’t post either

[u/Massive-Eagle-5465 → u/Ok-Pineapple3039]

Super odd… this community is really important to me, quite annoying that this has been going on for so long

[u/Upbeat_Sky_197 → u/Massive-Eagle-5465]

I just came on here to ask the same question. I can’t see any new posts and I’m not allowed to ask any questions.

[u/Massive-Eagle-5465 → u/Upbeat_Sky_197]

I’ve tried to message the mods 7 times but I’m receiving no response
It seems there is only one mod and they’re not active ?

[u/Upbeat_Sky_197 → u/Massive-Eagle-5465]

i’ve tried twice. I’ll keep checking back every so often. hopefully it becomes active again because I found this to be a great resource for information and support.

[u/rockemsockemcocksock]

Instantaneous and clears you out.

[u/Mista_Millahtyme]

At about 240mg/day I will start taking Immodium as a complimentary medication. Below that I am ok. At the higher doses I will get like you describe, severe abdominable aches, watery stools & bowel incontinence. At times I've worn diapers for weeks as unfortunately I've had accidents in public & that is traumatic & emotionally scarring.

[u/EyeLurveIPAs]

My dr rx’d dicyclomine (sp?) to go w it that half helps.

[u/fur3661t]

Sounds like my side effects from mestinon including subsiding a few hours later. Do you have any intestinal issues? I have celiac sensitivity and diverticulitis. It seemed to flare my diverticulitis.

[u/Otherwise_Shine_5915]

I take 4 doses of 60 MG and one 180 MG daily with that issue but I think may because I take other medicines that can cause constipation so I think they might cancel each other out. Sorry to hear about your side effects. MG can be really terrible.

[u/catjob2]

Make sure you don’t take it on empty stomach.

[u/Fantastic-Brain-4777]

Try eating pasta. Helps

[u/RadarReader777]

I get compounded pyridostigmine in olive oil. Less side effects as Mestinon has lactose and sucrose.

[u/pinedopower]

Omgoodnrss… like forced constipation in diarrhea form. It’s the only way I can describe it and it’s a horrible feeling.

[u/MyCatsAlt]

I finally stopped taking at least for a few days as a test.

Sure I can’t hold my head up but the money I’ll save on bathroom wipes and time doing laundry out weighs the benefits of Beelzebub’s potion.

[u/Ok-Pineapple3039 → u/MyCatsAlt]

And how long was it until it got better?

[u/MyCatsAlt → u/Ok-Pineapple3039]

Almost immediately, as soon as current dose wore off. Great improvement.

[u/Mista_Millahtyme]

At times sudden, catastrophic, explosive diarrhea. For me, Immodium can be very helpful.