• Posted by Jennifer Thompson on April 15, 2022 at 7:47 pm

    I was wondering as far as Mestinon goes does it help with the fatigue and muscle weakness? Also does it help deter a crisis? I’m trying to understand how it works and what all it’s supposed to be helping. Also I’m having winded feelings and hard times breathing at times when I eat. I explained it to my doc as not being able to breathe while I eat and having to take a deep breath and pause in between.

    she said these were “severe symptoms” I have no clue. And I’m like okay so the Mestinon is for this? You can tell I’m overwhelmed lol

     

    Thank you

    Jennifer Thompson replied 2 years ago 5 Members · 6 Replies
  • 6 Replies
  • Alan Bridle

    Member
    April 23, 2022 at 4:05 pm

    Jennifer – yes Mestinon will help you with your symptoms immediately but its effects are short lived.  You will need to take other medications, probably steroids and other immuno-suppressants, to handle your symptoms long term.  Difficulty breathing or swallowing while you are eating is something to be concerned about as it can turn quickly into a crisis, as I know from personal experience.  Mestinon will help you to eat if you take it shortly before each meal but it needs to be supplemented with other medications.  Your doctor should have a plan for your longer term treatment as well.  There is no quick permanent fix for myasthenia gravis, it’s a long haul for all of us, unfortunately.   We can live with this disease but we do have to adapt and make concessions to it.   There is a lot of good information in these Forums so you have come to a good place where people can share their experiences and you will see you are not alone at all in what you are confronting.

    • Jennifer Thompson

      Member
      April 24, 2022 at 8:31 pm

      Thank you for your reply! Very helpful and reassuring. I figured I would have more added down the road. I have my EMG next month. I am thankful for all the information available here.

  • Peter Livingston

    Member
    April 27, 2022 at 8:33 pm

    Getting to know your own MG is important. I have yet to find any MG person who has exactly the same symptoms in the same way as another MG patient. You will need to get to know your own response to the various factors.

     

    Getting to know your own MG is important. I have yet to find any MG person who has exactly the same symptoms in the same way as another MG patient. You will need to get to know your own response to the various factors.

     

    I have had MG since 2014. Diagnosed in 2015 with a sign MOMA and immediately had a thymectomy. I was placed on Mestinon 60 mg four times a day and had rapid improvement to a point .  My difficulty in breathing, swallowing and ptosis improved dramatically. But the fatigue and upper body weakness have continued.

     

    My difficulty in breathing, swallowing and ptosis improved dramatically. But the fatigue and upper body weakness have continued.

     

    With each successive year post thymectomy I was able to reduce the Mestinon to as low as 30 mg three times a day.  I reached a point where I was only taking 30 mg once a day when needed when I got my first Covid vaccination. No problem following the first Covid vaccination. The second shot threw me into a near crisis state. My neurologist began IV I G with a five day loading dose infusion followed by once a month there after. I noticed almost immediate improvement just as I had post thymectomy and starting Mestinon.

    This was followed once a month there after. I noticed almost immediate improvement just as I had post thymectomy and starting Mestinon.

    Some may think I’m crazy, but I went ahead and got the booster for the Covid vaccine while I was taking IV I G and had no further negative response .   I figured if I was going to get Covid I wanted to do it having been fully vaccinated so that I could minimize that infection and not complicate my MG.

    I am now on IV I G every seven weeks, no Mestinon, and I’m traveling internationally without complications.

    Yes it has changed my life but by paying attention to my own symptoms, and managing difficult times with Mestinon, and a regular routine of IV I G my quality of life is near normal,

    I hope your experience in learning about your own MG has a good course.

  • Ms.Will

    Member
    April 27, 2022 at 8:33 pm

    Hello,
    Yes it definitely will help with the fatigue and weakness. As you become more in tune with your body you may find yourself like some of us, being able to spot signs before an episode, flare up, or what I call a ruined rest of the day.
    In response to the other post, it is short lived but if you have a good neurologist, after your EMG, they should be able to get a good action.

    MG is unpredictable so it may take a bit of time, but hopefully it will get a bit better for you.

  • Amy Cessina

    Member
    April 27, 2022 at 10:00 pm

    To specifically answer your question. Mestinon will not deter a crisis nor will it stop progression of MG. It merely prevents acetylcholine  from being degraded quickly so it keeps your muscles functioning until it wears off in about 3 hours or so. Many people only take mestinon although sometimes it won’t seem like that from the posts. So eventually you have to know your body , symptoms, progression so you can best treat the severity you have.  I have not taken any strong medications myself after many years of this disease. But if I needed to I definitely would. I constantly put up with annoying mild symptoms of the face area that  I wish I could rid myself of but I follow my neurologists advice.

  • rene-mathieu

    Member
    April 29, 2022 at 2:29 pm
  • Jennifer Thompson

    Member
    April 29, 2022 at 7:10 pm

    Thank you for so many great replies! I started taking it and began having a reaction of raw burning mouth and throat… like if you stick your hand on a stove but my mouth and throat. So I am waiting to discuss a possible plan B.

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