Myasthenia Gravis News Forums Forums Life Hacks and Tips Any Tips for managing diarrhea from Pyridostigmine

  • Wayne Eisen

    Member
    January 21, 2024 at 1:01 am

    Has noone else heard or read about Vitamin D acting as a treatment for autoimmune diseases? I just started taking massive doses. There are serious concerns, of course. You MUST restrict calcium intake if you do this, to avoid Hypercalcemia. I’m hoping I get a better result than from my 1st 4 week round of Vyvgart infusions. I get my second round in February. I’ll keep you folks updated next month. Best wishes, Wayne

  • Wayne Eisen

    Member
    January 21, 2024 at 6:40 pm

    As you say, neurologists nd doctors in general, will disapprove non-prescribed treatments. And pharmaceutical companies will not spend a lot of money on R&D on vitamins. 🤣 If you do self-study like I’m doing, be very careful. Restrict calcium intake. I’m doing 80,000 IU daily. I’m not suggesting that for anyone. I’m taking 50 mg prednisone and a huge amount of collagen. Best wishes, Wayne

    • Barry

      Member
      February 2, 2024 at 2:49 pm

      Your body does eventually adjust. I would also take a probiotic, to ensure your gut bacteria are “somewhat” normal. Find a neurologist that specializes in Auto Immune diseases, like Myasthenia. I found a great Neuro at the University if Miami.

  • paul spychalski

    Member
    February 1, 2024 at 10:21 am

    What do you take for Collagen?

    • paul spychalski

      Member
      April 27, 2024 at 12:33 pm

      FOUND this: <b style=”font-family: inherit; font-size: inherit; color: var(–bb-body-text-color);”>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

  • robert-wright

    Member
    May 6, 2024 at 8:21 pm

    I found that if I take 1 pinches of celtic salt [about 4 grams ]4 times a day really help with my diarrhea.I changed from table salt to celtic salt. Barbra O’neil on you tune explains it in great detail , look for salt and water by barbra O’neil. hope this help .it takes maybe a week to work. bob

  • Keith Wilson

    Member
    May 8, 2024 at 2:08 pm

    Always have food on your stomach prior to taking the medicine. You might also try 180mg extended release 2 x a day and 2 60mg a day. Working wonders for me!

  • Glen Ackermann

    Member
    May 8, 2024 at 2:30 pm

    Here is what has worked for me. First thing is to identify other things that trigger a bowel movement. For me, excessive alcohol consumption which for the purpose of discussing diarrhea is more than one beer or drink for me. I now limit my drinking to either a Friday or Saturday night. Coffee can be an issue. Spicy food. I like my food HOT. Once again I prefer to indulge when I feel reasonably sure that I will have quick and unfettered access to a restroom. I always take my Mestinon immediately after a meal. Milk and ice cream have been greatly reduced to prevent lactose intolerance. In short, avoid the things that sometimes makes you go to the bathroom because it is only worse when you take Mestinon. I have found that increasing my fiber intake has helped. I usually try to eat an apple with my lunch. Fiber helps to bulk up and stabilize the stool and seems to stabilize the digestive track. As time has gone on, the diarrhea has become less and less. I hope my tips might help you or someone else. Good Luck.

  • JoeATL28

    Member
    May 8, 2024 at 2:52 pm

    Lots of good input from everyone so thank you! I have been similar to many of you and it has been a journey to figure it out with the tummy issues. Being that I take 180 MG once a day Pyridostigmine (Mestinin generic) and Prednisone (now 5mg once a day on MWF), my nuerologist has me take Omeprazole (Pepcid) 40MG daily which really seems to help. Like someone else mentioned, I start with a greek yogurt and eat something before taking my meds and that has really seemed to help. It can still vary based on what I eat, but an upset stomach is much more rare now if I just eat first and do one of the greek yogurts that is to help the tummy. Good luck and appreciate this community working through it together!

  • Lou DeYenno

    Member
    May 8, 2024 at 2:58 pm

    I used to have minor bouts with diarrhea when I took mestinone plus other drugs (prednisone) at the same time. Now I take a long acting mestinone pill in the AM with a little bit of food and wait about 2 hours before taking anything else.

  • Alan Bridle

    Member
    May 8, 2024 at 4:08 pm

    I have now been on 60mg x 3 pyridostigmine for nearly 2 1/2 years. For the first month or so I had terrible diarrhea and I also needed to take one dose shortly BEFORE I ate anything in order to be able to swallow safely and chew. This was a very bad regime but my neuro said to tough it out and it would improve.

    It did improve, without changing my medication regime. After two months I was not having any more “emergencies” and I could resume some social life using imodium as a short term preventative for hurried trips to the bathroom, as well as wearing Depends. After about a year, the timing of my pyridostigmine doses was no longer as critical and the diarrhea had gone away completely. I still get bowel urgency and pass a lot of gas but the initial very gross effects of the pyridostigmine seem to have worn off, as has the need to coordinate taking the drug with mealtimes or for wearing Depends. If I miss doses, I will still notice worsening of my ptosis and my ability to hold my head up, but I no longer see major dose-timing effects on my swallowing and chewing.

    I am 82 years old and my MG was late-onset (at 79) so my neurologist says remission is unlikely, but I am symptomatically stable and my body seems to have slowly adapted to the dose of this drug. I rarely have to take imodium as a preventative any more, but I will do so if I am going to events where quick trips to the bathroom would be a problem.

    So I would recommend patience, imodium, and toughing out the unpleasant early adaptation phase of pyridostigmine. The early stages were rough for me too, but I now live a fairly normal daily routine apart from residual ocular MG.

    However, we are all different in our symptoms and in our response to some of these drugs so there is no one-size-fits-all answer to our problems.

    Good luck with your treatment whichever route you and your neurologist agree on!

  • MikeS

    Member
    May 9, 2024 at 7:58 am

    Same problem here. I started Mestinon a couple of years ago and got diarrhea from the bloating. I asked the local pharmacist for the best over-the-counter (OTC) solution and she said to use simethicone-based relief. Gas-X was one OTC brand in stock so I tried it (the Ultra/180 mg strength) and it worked like a charm when taken with the Mestinon. Eventually my body adjusted to the Mestinon after a while and I no longer needed it. Gas-X comes in many strengths, so you would likely need to find one that works best for you. Good luck!

  • Jack VanWey

    Member
    May 9, 2024 at 4:55 pm

    First of all I take 60mg of pyridostigmine 4times a day. I occasionally have diarrhea for no apparent reason, at those times I use over the counter Imodium as directed on the box. Have had no issues or recurrent symptoms. My pyridostigmine is only good for a little over 4 hours before symptoms (double vision) will start to return.

  • Andy Coyne

    Member
    May 11, 2024 at 5:17 am

    Propanthaline tabs 15mg

    Helps with loose stools, sweating and urinary urgency.

    Made my life so much easier!

  • Tina

    Member
    May 11, 2024 at 8:15 am

    Reading everyone here, I’ve picked up some good tips. Unfortunately (?) I have the opposite problem and have to work against becoming impacted. I can’t tolerate Miralax and am on a plant based diet to eliminate bad cholesterol, so my GI dr says I have a lot of plant fiber already, which should of been helping. I just started taking pepcid minimum at night before my Parkinson’s med to prevent the awful nausea, and Pantopraze sodium dr 20mg to help my stomach burning, which my MG neuro says is not caused by my pyridstigmine 60mg 3x day. My stomach does feel better and with 8-9 glasses of liquid a day, and taking my meds with food, I know that helps. No one can figure out why my bowels aren’t moving. All my drs said it was the MG and spina bifida since it involved nerves and muscles in my intestines, but my MG neuro said no, it’s the Parkinson’s, and that dr said no. I’ve got a new neurologist I’m going to see this month for another opinion on the Parkinson’s and seizures, so maybe he’ll have some insight. Meanwhile my GI dr said my CT abdomen scan showed only a thickened bladder wall, and my stool tests were normal, so he put me on Motegrity 20mg to try to get the muscles in my intestines to move better. No one’s offered any insight on the nighttime bladder frequency/ urgency. There’s no infection and the Parkinson’s dr said nothing. Interestingly, years ago I spent a week in the hospital with seizures and bowel impaction, and the colorectal surgeon told me to stay off plant fiber unless it was cooked really soft. So I’m going to give up the plant burgers and take some probiotics and see if that helps. I’ve been eating greek yogurt but it’s not enough. I’ve only been taking 2 of my pyrido a day, so I’m going to try the 3rd dose and see if it helps. I’ve had diarrhea issues in the past—it seems to come back every 5 years or so. I use kefir, probiotics and greek yogurt when it comes back, along with bananas, tea, bread products and jello/gummies to reset the flora and bulk up again. It’s just I’ve rarely ever been blocked up, only surrounding surgeries. The only thing I’ve had done recently is an endoscopy/colonoscopy in October in which I was put to sleep and a precancerous polyp removed. Maybe that was enough to slow my intestines down again but that’s been awhile ago. It’s always been a battle between the diarrhea/constipation. The joys of MG/Parkinsons/spina bifida/seizures. Not that I’m complaining lol 😂

  • Darrylc

    Member
    May 13, 2024 at 2:40 pm

    I replied months ago but see this topic coming around again

    Another thing that you can try is eating some yogurt daily

    When women are pregnant and doctors don’t want to prescribe medication for this issue they tell them to eat yogurt

    The cultures in yogurt act like a anti diarrhea med without the possibility of harming the baby

    THere are plenty of flavored versions out there or you can mix it up yourself

    A little granola and fruit mixed in or some lemon curd makes it pretty good

    Again hope this helps

    Darryl

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