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Any Tips for managing diarrhea from Pyridostigmine
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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
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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
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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.
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What do you take for Collagen?
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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
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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
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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!
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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.
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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!
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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!
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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.
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