Any Tips for managing diarrhea from Pyridostigmine

[Kathy]

Sorry you are having this effect. I found that I got better as my body adjusted to the medication. But it took time and I still occasionally have a problem. Speak to your pharmacist. Mine told me that she could give me something to counteract this side effect if I needed it.

[paul spychalski]

I’m having the same problem as David, Bloating-gas-diarrhea. My Doc at the VA said it was because I was taking 60mg Pyrostigmine 3x a day. My Neuro started me wit 30mg 3x a day but it wasn’t doing much, so he increased it. Now I have brain fog, Diarreha and incontinence. I’m going to try and adjust that med.

[RobertS]

I hope you and I can figure this stuff out, I will say I definitely had the brain fog before meds. I am an instructor at our local community college, and for the last 6+ months I have been so worried that my mind was failing, I have been fighting weakness for 4 to 5 years. But this last year was very difficult until I finally got the diagnoses and started meds. I am better in all ways except for the diarrhea as far as I can tell, at least so far. I am not back to 100%, but brain fog is clearing much better, I started at 60mgx3 with no fog improvement but when I went to 120mgx3 I definitely could feel the difference especially in the fog and stamina areas. I will also say, as far as incontinences, my butt leaked wet clear mucus like stuff on and off for the last couple years or more. I always wrote it off as old man sweaty swamp a$$. but now since I up to 120mgx3 that is fixing itself too. So relieved that so many little things are slowly turning the right way. I wish you great success in finding solutions for your challenges. I have read a little about Huperzine A supplement but I am not sure it is for me or not. I seen a study that suggest that it helps to replace Pyridostigmine with few side effects but the people in the trial were tested MG positive for the AChR test, my positive was the Musk test, so I do not know if it would help me or not. Still doing my homework there. Good luck on your journey.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4734680/#:~:text=Vitamin%20D%20could%20be%20a,of%20vitamin%20D%20in%20MG.

ncbi.nlm.nih.gov

Remission of Severe Myasthenia Gravis After Massive-Dose Vitamin D Treatment

Patient: Female, 49Final Diagnosis: Myasthenia GravisSymptoms: Muscle weakness • shortness of breathMedication: —Clinical Procedure: Vitamin DSpecialty: Endocrinology and MetabolicUnusual or unexpected effect of treatmentVitamin D has ...

[paul spychalski]

“If your primary side effect from pyridostigmine use is diarrhoea, you can use any medicine that works to combat this. Examples are; Imodium, Pepto-Bismol, Codeine phosphate, Lomotil (co-phenotrope), and Rifaximin.Feb 9, 2024″. Found this on Google….

[RobertS]

I have read that others say the same, “your body has to adjust to the new drug” I am 4 weeks in, any guesses on how long it took your body to accept the new meds?

[paul spychalski]

My doc had me cut back to 30mg 3x a day of Pyridostigmine. The bloating and diarrhea are better.

[Stephen D. Turner]

My doctor prescribed cholestyramine which is in powder form. Take 2 doses each day. Worked like a charm to control my diarrhea. Also has other beneficial effects. Not cheap. But works well for me. I am taking Prednisone, Mestinon, and 2 other meds which have diarrhea as a side effect.

[Carrie McDade]

2 things I have tried that help somewhat:

1. Take Metamucil. It doesn’t reduce the frequency of the stools, but it does solidify them a bit.

2. Taking Imodium, 2 tabs, daily also helps me. My gastroenterologist says it is ok to take it everyday. More than 2 tabs causes hard constipation in me.

Good luck!

Carrie

[paul spychalski]

Thanks.

[Ann Marie Hetrick]

When I started on pyridostymine I had horrible gas pains and diarrhea. I started eating activia twice a day with a dose of the med and dannon lite and fit twice a day with a dose. This really help me tremendously. I am now on 120mg 4 times a day and tolerating well. I do sometimes have loose stools depending on what I eat.

[Keith Wilson]

Happened to me too. Took about 4 months before back to normal. Diet didn’t seem to matter. ALWAYS take with food!!

That seems to help the most. Dosage had no effect on it. Hang in there because the medication is worth the sacrifice of the side effects

[RobertS]

4 month, thanks for the target, I am going to keep pushing through. the Drug does a very good job at keeping the whole weakness thing at bay, but the poops are just too much. I will hang in there for a few more months.

Thanks

[Boss]

When I was originally diagnosed by my Neurologist with gMG he told me to take 60mg of Pyridostigmine 4 times daily and .125 mg of Hyoscyamine Sulfate to control the diarrhea. After about a week I decided to see what would happen if I did not take the diarrhea medication. As you can imagine that was a BIG mistake. It took me about a week to get the diarrhea under control again. I have since had to increase my Pyr to 120 mg 4 times a day and only take 2 tablets of Hyoc per day. Morning and evening. My diarrhea is now under control. I hope this information will be beneficial to the group.

[Jennie Morris]

Drug interaction notes that you should not take hyoscyamine sulfate if you have Myasthenia Gravis. Have you had any weakness from it?

[RobertS]

all good data, thanks, .125 mg of Hyoscyamine Sulfate, I have not heard of that but I will do some digging in.

[RobertS]

Thanks for that additional drug tip, If I dont get this under control soon I will see if my nero guy will give me a script for that

Thanks again.

[Bambilin]

Imodium helps. But then I’ll alternate between diarrhea and constipation. After 5 years I’ve given up and use disposable briefs. I have to admit that eating shredded wheat instead of donuts for breakfast will really help.

[RobertS]

Thanks for the info

[Charles Karcher]

I was originally on 60mg 4 times a day then increased to 6 times a day. My neurologist then moved me to 180mg extended release twice a day that has proven to be the best course for me. I still have 2-3 stools in the morning but the rest of the day is good.

[Gaylee lacorte]

I’m on 3 times a day but you’re saying by taking more it Will help with diarrhea

[Cheryl]

I also had diarrhea up to 6 times a day after starting Mestinon 60mg 3x/day. Neuro acted like this was an anomaly, sent me to gastro who wanted to do colonoscopy and biopsy but admitted it could be Mestinon. Switched to 180mg every 12 hrs. I increased uncooked oatmeal mixed with Kefir, eliminated red meat and pasta.Then decided to try limited feeding time to 4 hrs which resulted in good weight loss and reduction to 1-2 well formed. It took a year to get to this point but also have quadrupled how far I can walk,no longer get so breathless have to lay down for bipap breaks, can do better taking care of house, brain fog lifted but blurry vision if don’t wear sunglasses or try to read long.

As someone else said, have urinary incontinence with urge, stress and seems like a urinary retention the rest of the time. Again neuro said this doesn’t happen. From the support group I find this is common. Thank goodness Meijer puts pads on sale often.

As a side note, I am triple sero neg but can’t get testing repeated to see if it changed, despite the lived experience of support group as neuro says that doesn’t happen in MG but does in other autoimmune diseases.

So just seek to have balance diet, add fermented foods, eliminate alcohol, manage stress in all forms, keep a detailed daily journal while things aren’t great so you can track subtle changes.

Good luck

[RobertS]

going to start with a probiotic, as far as fermented foods, I do ferment my own sauerkraut and pepper hot sauces if that counts.

it is getting better for me, I have learned to never take my pills on an empty stomach, that alone has help alot.

Thanks

[Mama]

I have been on this medication for five months. Initially, the diahreah was very bad. Now, I do not take the medicine until I have eaten something. That has helped tremendously. Also, my neurologist told me to take fiber pills. All the ones I looked at had magnesium in them, which MG patients are not supposed to have. I did find some fiber gummies at Walmart without magnesium. I take these faithfully right after I take the medicine. On occasion, I do use Immodium. I rarely have diahreah anymore by faithfully following this regimen. Sometimes I am really not hungry when it is time to take the medicine so I may eat some yogurt, but I never take it anymore on an empty stomach. I hope this helps.

[Gaylee lacorte]

Thanks I will go to Walmart and get the gummies

[RobertS]

Agree, never on an empty stomach for me anymore. I usually skip lunch as I am trying to lose some more weight, but now I have to eat something with these pills every time.

thanks for the info

[Gaylee lacorte]

What is name of the script the pharamist said to help with mestione?

[RobertS]

I think the script you are looking for is .125 mg of Hyoscyamine Sulfate, that is what someone above said helped him with the diaherra

[Jennie Morris]

Always eat at least 15 minutes before Mestinon, preferably 30 minutes. Saltines help control the bloating, gas and diarrhea. I use liquid Imodium so I can take very tiny amounts to treat it. Once you’ve adjusted to the dosage, it will lessen the side effect but if you have to increase your dosage, it will return. I’ve been on different dosages for more than 40 years and what’s worse than the diarrhea is the extreme constipation that comes if you ever stop taking Mestinon. My body has come to rely on Mestinon for bowel production.

[RobertS]

Agree, I have learned to eat a bit before the pills, thanks

[Bill Wheeler]

I had loose stools for 3 years, 3 or 4 times a morning or more, on pyridostigmine and alcohol made my eyes jumpy. Started taking a probiotic in am with food and it was a real improvement; very rarely do I have a loose stool anymore and am on my 3rd month of probiotic. Really a miracle for me.

Just quit alcohol about 9 days ago after many years of moderate drinking, 1-2 glasses of wine per day [red wine made the diarrhea worse] or an occasional beer. Quit because of all the recent studies of mouth and stomach/intestinal cancer related to alcohol, not because of MG. I don’t know if anyone else has tried probiotics with success but no side effects whatsoever for me.

[RobertS]

I will try adding some probiotics and see if it helps

Thanks

[Darrylc]

I had the same problem when I was on the 60 mg originally 6x a day

Went to the 180 mg time release x 2 a day issue was better one morning one night

Now on just one pill a day 180 mg a lot better morning

My wife will disagree with me but I think that lettuce goes right through me

I love salads but I feel they don’t like me

I still eat a lot of vegetables both raw and cooked that do not effect me but every time I eat salad with lettuce it’s get out of my way if I’m headed to the bathroom

A big issue is fighting the insurance co to cover the time release 180 mg

The 60mg is under $10, the 180mg is as much as $700+

Right now I buy it off insurance at Costco 60 pills at approximately $120

Hope this helps

[RobertS]

I have switched my eating routine, now I never take meds on empty stomach and that has helped alot, still not perfect but no panic runs to the toilet anymore.

thanks for the info

[Ron Willson]

I suffered with d<b style=”font-family: inherit; font-size: inherit; color: var(–bb-body-text-color);”>iarrhea<font color=”rgba(0, 0, 0, 0)” face=”inherit”> at the start. I did not </font>take<font color=”rgba(0, 0, 0, 0)” face=”inherit”> any action at </font>the<font color=”rgba(0, 0, 0, 0)” face=”inherit”> </font>beginning<font color=”rgba(0, 0, 0, 0)” face=”inherit”>. I had two very serious </font>embarrassing<font color=”rgba(0, 0, 0, 0)” face=”inherit”> bouts. My </font>pharmacist<font color=”rgba(0, 0, 0, 0)” face=”inherit”> </font>suggested<font color=”rgba(0, 0, 0, 0)” face=”inherit”> </font>it<font color=”rgba(0, 0, 0, 0)” face=”inherit”> was the medication. I spoke to my doctor and he suggested taking loperamide twice a day. That was 3 years ago. I have no problem since.</font>

[Ray Bartholomae]

Imodium. Tried it all. Imodium

[RobertS]

I will get me some, at least on stand by, and maybe a spare for the work desk. 8 hour work day is a long long day if you are clenching for the whole thing.

[MAMJ]

So sorry you are having GI problems with Mestinon, but that is perfectly normal. The reason most of us experience this is because Mestinon (pyridostigmine) is extremely cholinergic. In addition to helping us at the neuromuscular junction (delaying the effect of acetylcholinesterase and giving muscles more time to enervate), Mestinon causes an increase in most of the body’s secretions and has an intense effect on the GI system. It can cause:

• nausea and vomiting
• diarrhea
• abdominal cramps
• increased saliva and mucus
• pinpoint pupils
• sweating more than is typical
• muscle cramps or twitching

If you take way too much, it can even cause muscle weakness and lead to a cholinergic crisis.

I have learned a few things about Mestinon in my 30+ years with MG. The normal dose is 60mg 4 times a day, but don’t be afraid to adjust this. We are all different and may even need different amounts depending on the day. I was so happy when a neurologist finally explained to me that I didn’t need to take a whole 60mg tablet at once or a certain amount in a day! Judge by your weakness as to how much you need. Some people, like myself, don’t tolerate mestinon well. Yes, your body will adjust a bit, but it won’t likely solve your problem, and who wants to spend their day in the bathroom?

What helps?
First, always take Mestinon with solid food. On an empty stomach, the GI side effects are much worse. Break up the tablets; they are scored and break easily. I generally take half a tablet (30mg) in the morning. An hour or 2 later, if I am still weak after breakfast, I usually take a quarter tablet (15mg). I rarely take a whole tablet. If my weakness gets worse in the afternoon, I take a quarter or half tablet, and I wait about 30 minutes. If I am still too weak, I may take another quarter tablet. Don’t be afraid to experiment to see what works best for YOU. I have known people who take one 60mg tablet a day and others who require 10 60mg tablets at at time (taken with Imodium (loperamide) to counteract the diarrhea. You can take antidiarrheal meds like Imodium, but be careful. You want to stop the diarrhea without undoing the good effects. I don’t recommend Timespan Mestinon to those who have bad side effects; it made me violently sick for hours. By the way, you can always add fiber to your diet or eat healthier, but that will not solve the entire problem for most people. The cholinergic effects of Mestinon are powerful!

Note: Mestinon also contains lactose as a binding agent. For those of us who are lactose intolerant, this just adds to the GI problems. If you do have a problem with lactose, take a lactase enzyme tablet along with your Mestinon dose.

This will get better as you learn what works best for you and your body. Trust yourself, and find a neurologist with common sense who understands the side effects of Mestinon and how difficult that can be.

[RobertS]

Thanks for all the data, I do eat pretty healthy, we seldom eat out, I have a very large garden that we can most of our daily veggies, 3 dozen hens for eggs, and during the summer months we have plenty of our own fruit. We keep 15 to 25 colonies of bees so I do not spray any chemicals which makes gardening a challenge but we still get more than enough good food for us. Neither my wife or I can tolerate most town food, it is just too processed with too much chemicals for us.

I probably need to find me a good MG doc, I live in a very rural area and there is not much for choices around here. Thinking about going to Kansas City and seakign out a specialist, they are about 5 or 6 hours south.

I have my next doc app this coming Friday, I will talk to him about moving my pills around a bit. I always thought that if I take at noon and petter out at 4, and cannot take the last dose for the day until 6p, how bad would it be if I took one at 4 and one at 6, that would help me get past that 4 to 6pm window of drag as well at the 10 to 12 window.

Thanks fo the tips That is why I am here, I am sure someone else has fought the same battles I am facing now, why not educate myself instead of just fighting it the whole way.

Thanks for the feedback

[Tim]

Mine eventually went away, presumably once my body adjusted to the Pyridostigmine. My dosage is, and has been, 180mg (slow release) 3x daily. Like a lot of meds, it takes a while to adjust.

[RobertS]

That makes me feel a lttle bit beter, any thoughts on how long it took to get back to normal for you?

I am likely in week 6 by now. I can honestly say, I may bee seeing a little improvement.

Thanks for the data,

[JustDeb57]

Before my body adjusted I took Benefiber and probiotics and it did help. I still use the Benefiber. It took about 6 months to get back to normal.

[RobertS]

thanks

[Marlene Laird]

I have had the same problems with pyridostigmine. The diarrhea can be really bad, and I had accidents many times. How humiliating! I have a couple of tips. Always ALWAYS eat something when you take this medication. It doesn’t have to be a heavy meal, but a few crackers for example helps your digestive system handle the meds. Also, I have been told that these pills are largely lactose. So I was being lactose intolerant. So if I did not drink milk or anything else with lactose, the symptoms decreased greatly. Also I took (the store brand of) Immodium. Personally I found that there is a sweet spot in the dosage for controlling these effects. If I take no more than one sixty MG and one quarter of a sixty MG pill, I do not have the diarrhea etc. But still, occasionally I do still have problems.

[RobertS]

Agree, always eat a little something

[MikeS]

There are a dozen or more good remedies suggested in this comment thread. Each of us is different in how we are affected by MG and medications, so each of us finds different solutions that work well for us, individually. You might have to go through various trials and combinations of remedies to find what your body likes best. What I found that works best for me when I have to be on Pyridostigmine 60 mg 4x/day is some food in my stomach.

I developed lactose intolerance well into my adulthood (about 20 years ago) and now I have to severely limit my dairy products consumption or else it’s diarrhea city.

Most importantly for me, last year I completely transformed my diet to exclude all processed foods (when possible) and rarely eat beef/pork and inflammatory-inducing food, while making my main daily meal a smoothie filled with (all raw and organic if possible) various dark green vegetables, certain fruits (esp. lots of different berries), oats, different types of nuts,and a couple of other things.

I take Prednisone, so I include pre- and probiotics daily to counter the destructive effects of Prednisone on my gut microbiome.

These remedies have, each in their own way, eliminated the constipation and diarrhea I used to suffer from when I started Pyri (and MG) about 4 years ago. Also, the radical change/improvement in my diet has made me significantly healthier overall, which I think has resulted in a reduction in the intensity of my flare-ups.

Good luck with finding what works for you, and do come back when you’ve figured out what does and let us all know. ❄

[RobertS]

Thanks for the info, we are still playing with the meds, we dialed the drug back form 120mg to 90mg x3 but that is not fixing the poo problem but I can feel the weakness creeping back fast. Got to get back to the 120mg dose soon.

[Jonathan A]

I was finally diagnosed with very SERO-POSITIVE MYASTHENIA GRAVIS on 3-24-2020, after 8 months of trying to get a diagnosis. I was finally diagnosed, by a more intelligent third floor nurse, at the second hospital, who met patients that had my symptoms, and got me a consult with the the correct tests. I belong to and ZOOM with 4 MG support groups. I am still on my original diagnosed dosage of 60MGs times 3 for PYRID (MESTINON) and 1000MGs times 2 per day for MYCO (CELLCEPT). I was also on PREDNISONE … but it is a VERY DANGEROUS DRUG and I quickly tapered off it. It gave me weight gain, and medically induced INSOMNIA and DIABETES II.

What I always wonder is … are my problems due to the side effects of my MG or the side effects of over 5500 MGs of my 12 meds? So far when I read my meds, 5 cause Diarrhea and only one causes Constipation. So far, I have had neither problem, but my floaters do look slicker and smoother, than the Kibbles ball-like “clusters” look pre MG.

One warning that I have found out. If one of your many doctor specialists wants you to do a POOP-POT or that FECAL SMEAR test, both the test instructions on the product and on their website, SAYS don’t do those tests if you are always having DIarrhea. I believe it causes you to get false POSITIVES, because of great chance of having a touch of blood detected in the tests, especially if your doctors, don’t know much about MG … and they are also giving you any Blood anti clotting or thinning meds. So as my 4 MG support ZOOM Groups say … you need to be YOUR OWN HEALTH QUARTERBACK, as you know best what MG is … and all the meds you are taking. STAY SAFE and INFORMED!!!

[RobertS]

Thanks for the info, there is just so much to learn. I live in a very rural area and I know of one doc in our area, seriously considering trying to connect with specialist in Kansas City if I can not get this under better control.

[jeri castellanos]

i had the same issues using the 60mg tabs. My Dr. had me taking a ‘swig’ of Imodium every night as a preventive measure. It worked but i wasnt all that keen on adding yet another chemical to my body……When i got up to taking (5) 60 mg tabs per day i had had enough, so my Dr. switched me to the 180 mg ER/per day. The diarrhea became much less frequent (and the pills worked better for me). I still get occasional diarrhea, but not as bad. These also don’t bother my stomach as the 60 mg tabs did. And i have stopped taking my stomach meds also.

[Wayne Eisen]

Hi, Folks –

I know that you’ve been discussing the effects of Mestinon (Pyridostigmine). However, RobertS included in a post a link to am NIH study report on mega doses of Vitamin D and its impact on MG. Nobody, including Robert, had anything to say about this study, which I found surprising.

I’ve decided to do my own study and just ordered a lot of Vitamin D.

Also, I’m going to discontinue taking calcium pills and take a look at my multi-vitamins to restrict my calium intake, to avoid Hypercalcemia. I’ll let y’all know how this works out. Btw, check out that link and let me know what you think. Best wishes, Wayne

[RobertS]

I did up my D3 to 5000iu morning and night. I was thinking I would do this for a couple months and then try to cut back on my pyridostigmine, currently at 120mgx3. I spoke to my nero guy, and he said it is not a good enough study and he did not believe it would make a difference. I also spoke to him about huperzine A and he advised against it. Unfortunately he seems to be against most all supplements in general and wants me to stick to prescription based solutions. I am not happy about that, I think I may have to find a new guy. Unfortunately, not many Neo people in rural Iowa to choose from.

I will attach the article I read on Huperzine A as well. It is a lenghty paper, the key parts start at section 5, but the whole thing is interesting.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9608237/#:~:text=In%20a%20study%20with%20128,compared%20to%20prostigmine%20%5B69%5D.

ncbi.nlm.nih.gov

Effects of Natural Products on Neuromuscular Junction

Neuromuscular junction (NMJ) disorders result from damage, malfunction or absence of one or more key proteins involved in neuromuscular transmission, comprising a wide range of disorders. The most common pathology is antibody-mediated or downregulation ...

[James Guthrie]

Try cutting back on your Pyridostigmine and when you start or need to increase do half a pill at time. Build it up slowly

Good Luck

Jamey