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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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07-02-2018, 07:20 PM | #1 | ||
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Junior Member
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Long story short. After over a year and a half of intermittent explosive diarrhea and rt side back/abd pain; after multiple emergeny rm and urgent care visits; after multiple doctors, MRI's CT scans, bl work, stool specimen's for bacteria, virus, exotic pathogens (all negative) I see a G.I. doc who says, " After all the tests you'very had, if there was anything to find, they would have found it" and gave me Miralax. (Wow. That will really help the diarrhea)In other words, you must be making this up. Went to surgeon thinking it might be chronic appendix. He says probably not. Gives me a colonoscopy then sends me for a second opinion. He notices I was hospitalized a year ago for pancraeatitis. Orders a stool specimen. Surprise! Discovers pancreatic enzyme Insuficiency and orders Creon a pancreatic enzyme supplement. . Result, no more diarrhea. Wait. I have been on Mestinon for almost 2 years, faithfully following dr's orders. I discover Mestinon can cause pancreatitis. How come no other Dr for 1 1/2yrs
made the connection.. Why no communication with my neurologist. My neuro and I decide to discontinue Mestinon. (am also on 2,000 Cell Ceph). But after remaining on Mestinon for a year after the diarrhea started I may have injured my pancreas. Will probably need pancreatic supplement for rest of my life. (Good thing I'M 72. Also VERY expensive) Not complaining . Glad problem solved BUT why did it take so long. Exhausted and disappointed |
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07-03-2018, 07:22 PM | #2 | ||
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Grand Magnate
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I would like to caution you about making suppositions about relations between drugs and side effects, especially when there is virtually no evidence of Mestinon causing pancreatitis. Some people with MG can end up having pancreatitis, but not from MG or Mestinon.
https://www.hindawi.com/journals/crim/2011/309149/ People can lose enzymes (and stomach acid) with age. Also, have they visually looked at your pancreas? If not, they probably should to rule out cancer. Some patients with MG can have autoimmune paraneoplastic syndrome (multiple cancers). Imuran has had pancreatitis associated with use. Not sure about any other immune suppressants. Pancreatitis, which my last dog had, also requires a low fat diet. Did they discuss that? The Creon might be enough. But if you have symptoms down the road, you might need to reduce the dietary fat. Diarrhea occurs in the GI tract in Mestinon intake (in some people) due to increased peristalsis (how quickly food moves through the intestines). I just don't understand the logic here. Diarrhea can be a sign of pancreatitis, but does not cause pancreatitis. I have never heard of Mestinon causing pancreatitis. The drug does not need lipase, amylase, or protease to digest it. Mestinon is metabolized in the liver and cleared through the kidneys. Pyridostigmine - an overview | ScienceDirect Topics This article relates to use of Mestinon in the Gulf War vets, but those articles often have more detailed info than the Mestinon PDFs. https://www.fda.gov/downloads/drugs/.../ucm133154.pdf You could ask your neurologist if trying Mestinon again would be okay. What if this was just a coincidence? What if you can use Mestinon? Have you had your liver and kidney functions tested lately? I think more questions need to be asked here! Science usually makes logical sense. This relation between Mestinon and pancreatitis does not. Sorry, just can't even see how this is possible. Annie |
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"Thanks for this!" says: | ErinBear (07-04-2018) |
07-09-2018, 04:00 PM | #3 | ||
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Junior Member
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I just don't know. I can only tell you what I experienced. A year and a half prior to this I had acute pancreatitis. Admitted to hosp. I had follow up EUD. Showed some irritation but nothing else. My diarrhea never totally went away. Also had the rt side back pain. After all the tests the stool specimen indicated pancreatitic insuffiency. The Creon worked immediately, while I was still on Mestinon. Diarrhea stopped. I have found studies on line that indicate mestinon has caused pancreatitis in elderly pt. ( 60 and older). Apparently it acts or the physiological changes in the elderly cause a potentially unusual reaction.
I will be seeing a pancreatic GI specialist at end of July. |
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07-09-2018, 05:59 PM | #4 | ||
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Grand Magnate
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I'm glad you're seeing a specialist. Make sure you write down all the foods, drugs, and supplements you take, or have taken in the past couple of years. Figuring out what caused the pancreatitis is very important.
In some people, inflammatory foods can be an issue. If Creon helped with the diarrhea, while on Mestinon, then the culprit was likely the pancreatitis. There is dairy (inflammatory) in Mestinon tablets. There isn't in the syrup. The important thing is that you're better! You have a complex medical history, and really need someone to take everything into consideration. Aging really sucks, doesn't it?!! I turn 60 in a couple of weeks. Annie |
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