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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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03-04-2019, 08:24 PM | #1 | |||
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Junior Member
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Funny, I remember when I was a kid, my mother would eat cereal with an inch or less of milk in the bowel. It seems that many women just don't have a taste for many types of dairy or may even have an aversion to it, which must be some kind of cruel joke considering that women need more dairy than men. The day after my above post, I finally convinced my wife to go back to the 1/2 tab 3x's per day that her doctor started her on and that has made a HUGE difference. But at some point she is going to have to go back to a full 60mg tab, or possibly even more to adequately address her vision and her muscle weakness, so I am DEFINITELY going to pick up some Lactaid or Dairy-Eze as the concentrated lactose could very likely be the culprit. Excessive gas is definitely a byproduct of the Mestinon in her case, whether it's a loud rumbling in her digestive tract, painful pockets of gas in her gut, a hard knot in her chest as well as the most obvious type of gas. So you really may be on to something with the lactose, and I cannot Thank You enough for this valuable info. This is why I turned to a user forum such as this, as people have real experience that might take doctors months or longer to figure out, if they do at all. When she goes back to a full pill, hopefully her body will also be more acclimated to the medicine, which could also help. And I know that eating before hand is always sound advice, but sometimes this poor woman simply could not eat due to so much digestive misery. You have really given me some incredible insight. [QUOTE=kiwi33;1273082]Daniel, what you have described about what your wife has experienced is a known side-effect of Mestinon. It might be worth encouraging her to discuss this with her doctors. Mestinon Side Effects in Detail - **/QUOTE] Kiwi, Thank You for your post. I/we are in continuous contact with her PCP and Neurologist, though some days they are on rounds and not at their private practice. Also, although stomach pain and intestinal cramps are common side-effects of Mestinon, it is worth noting for anyone who finds themselves being prescribed Mestinon, the SEVERE stomach pain and SEVERE intestinal pain/cramps from which she has been suffering are NOT common side-effects and should be addressed IMMEDIATELY by a physician: ** One of the possible causes for these kinds of severe reactions can be due to over-dosage, which is why I urged my wife to go back to 30mg 3x's/day, which was prescribed to her for only 1 week. It might be that - at least for her - going up to 60mg 3x's after one week was just too much too fast. If anyone else has some theories, I again welcome whatever info you might have to share. Thanks again to winic and kiwi for the care and consideration in reading and responding to my post. As always, I am humble and grateful. Daniel |
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03-05-2019, 11:13 AM | #2 | ||
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Grand Magnate
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Hi, Daniel. I'm pretty busy right now, but wanted to pop in to say something about the Mestinon tablets. They contain dairy. So if your wife has an issue with dairy/lactose, tablets might not work for her.
I use Mestinon Syrup, which has no dairy. There's also Mestinon Timespan. She may want to discuss those options (and costs) with her neurologist. I'll come back when I have more time. I hope your wife is doing well. Annie |
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03-05-2019, 06:32 PM | #3 | ||
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Hoping it's something as simple as the lactose, for her. At least it's an easy and pretty much harmless thing to try solving. Still don't know why they would choose to put lactose into the pill formulation. Seriously, what is wrong with those people?
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03-18-2019, 10:32 PM | #4 | |||
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Junior Member
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Thanks for taking the time to pass along this valuable information. As so many adults (esp. post-menopausal women) have issues with Lactose, it almost seems like some sort of subterfuge using it as a filler in this way. As Winnic1 brought to my attention, the Lactose filler may be a contributing factor. I haven't been on in a number of days as things have been very hectic, but I did bring it up with her doctor. In the meantime, I got my wife to go back to a half pill (30mg) which helped her in the short-term. We conferred with her neurologist and now she is back to a full tablet with an added prescription for Hyoscyamine Sulfate, which is a common med for IBS. Unfortunately, she just filled her script for Mestinon, so we'll have to wait a month before she can try the syrup, but I believe that is the way to go. Why have the added potential for Lactose problems if they can be avoided altogether? She is not a candidate for the time-release because she cannot swallow pills and needs to crush her pills. We'll see how she does with the added med. - so far since going back to a full 60mg she has experienced less distress, but it seems to be bothering her a little more each day. I think the real test will be when we can get her on the syrup and hopefully not even require a supplemental medication. Will keep everyone posted as to how it works out. Many thanks, Daniel |
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