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  • MikeS

    Member
    May 5, 2023 at 5:09 pm in reply to: Mestinon Side Effects

    I’m currently in the middle of a moderate Bulbar MG flare-up. The following is what happened when I changed my Mestinon regimen about 10 days ago.

    My Neurologist had me on 60 mg Mestinon three times a day: morning (6 a.m., noon and 6 p.m.) and then 180 mg Mestinon ER at bedtime (around 9-10 p.m.) I was getting upset and frustrated when I woke up in the morning due to the severe and painful muscle cramps, esp. in the legs/feet. I convinced her to let me replace the 9 p.m. 180 mg Mestinon ER with just another 60 mg Mestinon at midnight. Her big, but only, concern about my idea was the expected loss of sleep and the consequential side effects of insufficient sleep.

    When I told her that, since I always got up at least twice during the night anyway to urinate (side effect of 180 mg Mestinon ER or maybe the 30 mg Prednisone), I would just go ahead and urinate at that time since I was awake taking the (proposed) 60 mg Mestinon, thus replacing one of the urinate-only wake ups. So she let me try. Well, I’m so happy I thought of it because it’s made a huge difference for me. Now when I wake up (for good) in the morning at 6 a.m. to take my first 60 mg Mestinon dose of the day, I have very little, if any, muscle cramping and no pain!

    Secondly, before the change, my MG symptoms at 6 a.m., especially the swallowing, were more severe than at any other time of the day. I think this is due to the weirdness of the 180 mg ER Mestinon, but I don’t know why. With this new regimen of 60 mg at midnight, I now feel even better at 6 a.m. than during the remainder of the day, with no problem swallowing the 6 a.m. Mestinon and other meds taken at that time.

    Also, now my daily Mestinon amount has dropped from 360 mg to 240 mg. Yay!

    I’ve noticed, especially now, that 60 mg Mestinon takes about 30-45 minutes to become fully effective and starts to wear off after 4 hours or so, but still fairly effective up to 6 hours, the time I take the next dose. The better-balanced levels of Mestinon throughout the day and night makes eating meals easier to schedule (to avoid choking) and hours 5 and 6 (of the 6-hour periods) are easier to anticipate and navigate with respect to eating and activities.

    Please note that all this info is based on just my experiences and not necessarily applicable to anyone else. I’m not advising anyone to try this. But often one must be their own advocate, as you know, because Neurologists don’t usually think or know about some of the more subtle and variable effects of, in this case, Mestinon, that each of us experiences.

  • MikeS

    Member
    April 30, 2023 at 6:11 pm in reply to: Weaning off medications

    I was in the process of weaning down Prednisone from 40mg to zero (I was in remission) and got as far as 15mg last month. But then I had a long, severe sciatica episode with excruciating chronic pain, combined with a strong and emotionally stressful incident. As a result my MG symptoms returned a couple of weeks ago (particularly the swallowing/slurring) and I had to go back up to 20mg (and, unfortunately, Bactrim too, which causes G.I. symptoms that I REALLY dislike). The current flare-up is better managed now that I have learned a lot since my previous flare-up (as has my Neurologist, I might add) and thus my current symptoms are comparatively less severe due to better use of Mestinon. If the symptoms don’t start subsiding very soon then I will have to go back up to 30 to 40mg Prednisone and restart the weaning process (again). Grrrrr. The one good thing is that each time I go through all this I learn more about how to best manage the usage of both Prednisone and especially Mestinon.

  • MikeS

    Member
    April 30, 2023 at 5:23 pm in reply to: How Is The Pandemic Still Affecting Your Life?

    As long as I am taking Prednisone I will continue to mask in crowded and/or poorly ventilated public buildings, particularly as long as COVID continues to be a thing.  Basically I only go out to shop for groceries/necessities.  It’s easy to manage since I’m retired, but it still severely limits having any social life (restaurants, movies, etc.). I also refuse to travel in any vehicle (plane, train, bus, etc.) other than my car.

  • MikeS

    Member
    February 18, 2023 at 2:21 pm in reply to: Managing Prednisone Weight Gain

    As mentioned above, to lose weight you have to consume fewer calories than you use. It’s really not complicated; fewer calories and more healthy food is what you need to control.

    The hardest part (for me) is the constant craving and hunger, no matter how much I just ate. I found that happens when my Prednisone is 30mg or higher. Between 20 and 30mg the craving starts to wane, making it easier to control my diet.

    I’m currently at 20mg waiting to reduce to 15mg next month. I’m hoping I can then start to actually lose some of the 30 pounds I gained over the past seven months.

  • MikeS

    Member
    February 2, 2023 at 1:29 am in reply to: Managing Prednisone Weight Gain

    I gained 30 lbs during my most recent MG episode that started in July ’22 when I was put on 40 mg prednisone. Once all the sugary food in my fridge and pantry was consumed I was able to halt the weight gain. I still get strong food cravings in the evening but at least I’m not satisfying them with sweets any more. I’m now on 20 mg and am hoping the cravings will stop soon, as my prednisone is decreasing 5 mg each month. I guess you could say that half the battle is just getting the weight gain to stop. At some point I hope the cravings will come under my control and I can successfully return to a more reasonable weight.

  • MikeS

    Member
    January 23, 2023 at 1:23 am in reply to: Probiotics for MG

    Because my Neurologist wants me to take Bactrim (an antibiotic) when my daily prednisone dose is 20 mg or greater, I’ve been on it (Bactrim) for over 7 months now.  I hope to be on less than 20 mg prednisone starting in about six weeks if the weaning I’m currently undergoing is successful.

    Does anyone have suggestions on how to restore the gut microbiome once a person is off antibiotics? I’m familiar with (but have never used) pro/pre-biotics. What meds or OTC preparations have you found to be successful? Did you happen to go to a nutritionist for advice? Thanks for any feedback.

  • MikeS

    Member
    December 22, 2022 at 2:35 am in reply to: Smoking and MG

    I vape cannabis.  Normally I have no problems with it unless I’m having an MG episode, in which case the cannabis accentuates the symptoms and I have to stop it until the episode recedes.  Otherwise, it’s terrific (for me, at least) for moderating the pain and anxiety from MG.  I think the nicotine in tobacco might trigger MG in some people.

  • MikeS

    Member
    October 14, 2022 at 2:05 am in reply to: Liquid Mestinon

    3 months ago I had to be admitted  because I couldn’t swallow any solids including mestinon.  The liquid form probably could have prevented admission.  Wish I had known.

  • MikeS

    Member
    October 8, 2022 at 2:21 am in reply to: Describe Your Journey With MG in 3 Words

    Unexpected

    Unpredictable

    Uncurable

  • MikeS

    Member
    October 3, 2022 at 1:59 am in reply to: Mestinon 60 mg verses Mestinon XR 180 mg

    I’m currently on the tail end of a flare-up.  I take 40mg Prednisone, 90mg Mestinon 3x/day at 6 a.m., noon and 6 p.m., and 180 ER Mestinon at 9 p.m.

    The doc wants to wean me  down to less than 20mg Pred (which will take about 6 months), 60mg Mestinon as needed, and remain on 180mg ER.

    It’s hard to tell how well the 180mg ER is working, but once remission symptoms are as low as they can go, I might try skipping a night or two of the 180mg ER to assess any difference the following morning.  I should probably try to find a recording O2 Sat monitor and compare before/after stopping the 180mg ER.

    Any suggestions?

  • MikeS

    Member
    July 28, 2022 at 2:39 pm in reply to: Pain and Myasthenia Gravis

    I think it’s obvious from all the comments that mestinon enhances muscle cramps.  I never used to get them until I started mestinon around 2 years ago.  I get them primarily in my feet and usually at night.

  • MikeS

    Member
    July 28, 2022 at 2:26 pm in reply to: First Signs of MG

    Diagnosed 2 years ago.

    Most severe symptoms:  1st flare-up was ptosis and diplopia; 2nd was slurring; 3rd and subsequent were/are slurring and swallowing.  It seems to have settled on (unfortunately) swallowing/slurring going forward, with less severe symptoms attached (e.g., face muscles such as around eyes and mouth, eyelids, slight diplopia at edge of visual field, reduced stamina).  It’s the swallowing that put me in the hospital for the first time (last month).

  • MikeS

    Member
    July 22, 2022 at 4:29 am in reply to: Chewing With MG Weakness

    When my chewing and swallowing are at their worst, I’ve found bananas to be the easiest food to eat.  Otherwise, I defer to nutrition drinks like Boost and Ugain.  I’m looking forward to hearing what suggestions others may have.

  • MikeS

    Member
    July 22, 2022 at 4:22 am in reply to: Best/Worst Foods for MG Oral Symptoms

    For my most recent flare-ups swallowing was my main culprit.  I also have had phlegm/mucous issues in my throat and at the back of my tongue, which made swallowing the much-needed mestinon/prednisone combo very difficult.  I’m still recovering and am progressing well.  However, when I could barely swallow I found bananas to be the most edible/swallowable food, otherwise just protein/veg drinks like Boost and Ugain.  Eventually I was losing too much weight too quickly and got admitted for IVIg infusions for the first time.

  • MikeS

    Member
    July 18, 2022 at 3:37 am in reply to: Hearing loss in Myasthenia gravis

    I’d be surprised if it turns out that MG can cause hearing loss.  Since MG only affects voluntary muscles, and I don’t know of any voluntary musculature in the ears, it seems reasonable to suspect an MG med, or else another condition or disease.

    Mike Stabile

  • MikeS

    Member
    July 10, 2022 at 1:56 am in reply to: Magnesium and Myasthenia Gravis

    I just wanted to be clear about my previous comment… I’m referring to not taking Mg ONLY during a flare-up. not while in remission.

  • MikeS

    Member
    July 10, 2022 at 1:39 am in reply to: Magnesium and Myasthenia Gravis

    Today I’m in the middle of my first 5-day IVIG infusion series and I hadn’t really eaten much of anything for about 2 weeks because of my swallowing difficulties. Upon admission they did bloodwork and my Magnesium was 1.6 so the admitting doc ordered Magnesium, of course. I am so fortunate that a couple of months ago I just happened to have read a comment by someone on this website that mentioned about not taking Mg for anything (like, for example, leg cramps). I looked around here and at other MG forum sites, did some more formal research and figured there was something about this so I did something I’ve never done in my life and refused the order. While an inpatient I dug around some more and, voila, Mg inhibits ACh production! I had to educate my nurses and the ordering MD and they soon realized what might have otherwise happened (exacerbate my flare-up or cause an MG crisis). My advice is to learn as much as you can about MG and known triggers because about 99% of the medical community know very little about MG, and there may be times that you’ll have to stand up and be strong and insistent and have some reference(s) handy to back up your decision. This website might have saved my life.

  • MikeS

    Member
    May 14, 2022 at 2:12 pm in reply to: Mestinon Side Effects

    I’m on 180mg ER mestinon which I take right before bedtime (as instructed). The side effects have continued to mostly be GI cramping, bloating, mild nausea and mild diarrhea.  To stimulate my appetite (i.e. supress the nausea) I use cannabis, otherwise I would lose weight.

  • MikeS

    Member
    April 27, 2022 at 7:48 pm in reply to: Mestinon 60 mg verses Mestinon XR 180 mg

    I take it (the 180mg XR).  I take it at the same time before bed each evening.  That’s all the mestinon I’m taking right now.  I also take 10 MG prednisone daily in the a.m.  It does give me some leg muscle cramping at night, some diarrhea in the morning and stomach cramps at any time during the day.

  • MikeS

    Member
    May 19, 2023 at 3:33 pm in reply to: Vyvgart side effects

    Three years now with MG.  Last summer I got my worst flare-up ever (ended up hospitalized for 5 days) as a result of doing daily power walks (1 mile in 15 minutes) for a couple of months.  I’m personally convinced that I must avoid strenuous exertion at all costs.

  • MikeS

    Member
    May 5, 2023 at 5:31 pm in reply to: Mestinon Side Effects

    Because I’m currently at or above 20 mg Prednisone (I’m at 30 mg right now), I have to take Bactrim (a general antibiotic allowed for MG). I’ve always dreaded being at/above 20 mg because the Bactrim has terrible and very painful gas and bloating side effects (much worse than Mestinon, at least for me).

    I got desperate and decided to just try some over-the-counter anti-gas medicine, and the CVS pharmacist, when I asked, said Gas-X (i.e., Simethicone) was the best. I of course first checked a drug-interaction site (e.g., WebMD or Medline) before taking the first dose. I also made sure my neurologist was okay with it.

    I take the Gas-X with the Bactrim in the morning, with some food (applesauce or a banana). It has helped me A LOT. No more spending 3-4 hours in the morning running back and forth to the toilet, and unable to leave the house as a result, on the three days each week that I’m required to take Bactrim.

  • MikeS

    Member
    October 19, 2022 at 11:25 pm in reply to: Describe Your Journey With MG in 3 Words

    There’s some weird issue with the forum software.  It seems that if you take too long to type up your comment it seems to freeze when you submit, thus making you think it wasn’t accepted and so you’re hitting submit again, etc.  What I do now is type up my comment on another app and then copy and paste it and immediately hit submit.  Then I exit the forum and re-enter and find my first submission is there.  If it isn’t, then I already have it typed up and can easily copy/paste/resubmit one more time.  It’s usually there the first time, and it’s always if I submit a second time.  I contacted the webmaster about this, but never received a reply.

  • MikeS

    Member
    May 26, 2022 at 1:00 am in reply to: Mestinon Side Effects

    Wow, I’m really impressed that you have no  symptoms from either the prednisone or the Mestinon.  You are really lucky.  Currently I am on 5mg Prednisone and 180 mg Mestinon ER (extended release).  I take the prednisone in the a.m. and the Mestinon a little while before bedtime (around 7 p.m.).  The prednisone causes increased appetite (with weight gain), acne in various body sites, and some other minor issues.  The Mestinon causes significant G.I. problems, especially in the morning (diarrhea, constipation, etc.), muscle cramping and twitching, and night sweats.  The good news is that I’m currently (for the past 4 months) in remission for my MG issues, so the trade-off is definitely worth it.  Again, you are really lucky not to have any symptoms.  Good luck!

    Mike

  • MikeS

    Member
    May 13, 2022 at 9:04 pm in reply to: Mestinon Side Effects

    I have Kaiser, Southern California.  My Neurologist so far has been considerate and helpful, but her experience w/ MG seems quite limited.  Does anyone have/know a So Cal Kaiser MD who is experienced in MG treatment?  If so, please tell me their name so I can look them up.  Thank you!  Mike

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