[MikeS]

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!

[MikeS]

I started on Fosamax a couple of months ago when I got my first osteopenia diagnosis (via DEXA Scan). I absolutely attribute it (osteopenia) to Prednisone, which I’ve been on for almost three years now. I’ve been cycling up and down (40 MG <–> 10 mg) in conjunction with the periods of flare-ups and remissions. To answer your question, I’ve had no noticeable side effects from Fosamax, and this is the first prescription drug I’ve ever taken with that result. Most of the other prescription drugs that have given me enhanced MG symptoms were listed on the MG precautionary drug list (http://nebula.wsimg.com/903ebe2c701eb4e72e3211dc9fb9064e?AccessKeyId=7F50FBE19A111D19DDAC&disposition=0&alloworigin=1). I’m sorry that your MG has become more difficult to control, and hope you get it figured out soon.

Mike S.

[MikeS]

I did a cursory search on Google and it seems, at first glance, that this shortage happened primarily in Australia starting January, 2023, with spot shortages in Canada and Great Britain. If anyone has current information on this issue, especially if occurring in the U.S., please reply and include any relevant link(s). I live in California and use Pyridostigmine, and there’s been no problem with supply here.

[MikeS]

I’ve kept up with all the Covid shots (vaccines and boosters) since the start of the pandemic (which happens to also be around the time my MG started). I’ve never had any symptoms from the shots (both Pfizer and Moderna) other than a little soreness at the injection sites. I don’t know if there’s a relationship, but I’ve also never had Covid symptoms whenever I’ve acquired a Covid infection (i.e., positive Covid test). I wonder, too, if the Prednisone or Mestinon that I am usually on are possibly responsible for negating the Covid shots’ symptoms. It’s truly fascinating that we’re all so different from each other!! MGFA should sell snowflake pins for us to wear.

[MikeS]

1. Besides just resting or meds, are there other ways to deal with MG-induced muscle fatigue?

2. What triggers have you discovered that will definitely induce your flare-ups and how did you learn to avoid them (the triggers).

3. What solutions have you found that will relieve (some of) your side-effects from Prednisone.

4. Same as (3.) but for Pyridostigmine (Mestinon).

5. How much have virtual (Zoom) meetings helped you deal with your MG and specifically in what ways?

6. Do you use cannabis for relief from MG and, if so, how does it help you?

7. What online sources and websites do you usually go to for finding information/resources to help you deal with your MG?

8. Would you support the establishment of an online “library” of information and resources for all MGers to use (not MGFA)?

[MikeS]

I thought Pyridostigmine was causing my watery eyes. I stopped “Pyri” a couple of months ago when I went into remission but the watery eyes haven’t stopped. Thus, I now attribute it to Prednisone, the only other MG drug I’m still taking. My Optometrist last year told me that I had Dry-eye syndrome, which I’ve only had since I started Prednisone a few years ago, so I still attribute the watery eyes to the Dry-eye (which I attribute to the Prednisone), because, ironically, Dry-eye does cause watery eyes (see: my.clevelandclinic.org/health/diseases/24479-dry-eye ).

[MikeS]

There are a dozen or more good remedies suggested in this comment thread. Each of us is different in how we are affected by MG and medications, so each of us finds different solutions that work well for us, individually. You might have to go through various trials and combinations of remedies to find what your body likes best. What I found that works best for me when I have to be on Pyridostigmine 60 mg 4x/day is some food in my stomach.

I developed lactose intolerance well into my adulthood (about 20 years ago) and now I have to severely limit my dairy products consumption or else it’s diarrhea city.

Most importantly for me, last year I completely transformed my diet to exclude all processed foods (when possible) and rarely eat beef/pork and inflammatory-inducing food, while making my main daily meal a smoothie filled with (all raw and organic if possible) various dark green vegetables, certain fruits (esp. lots of different berries), oats, different types of nuts,and a couple of other things.

I take Prednisone, so I include pre- and probiotics daily to counter the destructive effects of Prednisone on my gut microbiome.

These remedies have, each in their own way, eliminated the constipation and diarrhea I used to suffer from when I started Pyri (and MG) about 4 years ago. Also, the radical change/improvement in my diet has made me significantly healthier overall, which I think has resulted in a reduction in the intensity of my flare-ups.

Good luck with finding what works for you, and do come back when you’ve figured out what does and let us all know. ❄

[MikeS]

Prednisone will also cause memory problems.

[MikeS]

My current list of supplements are:

Omega-3 (fish oil)

Turmeric

Areds-2 (inhibits macular degeneration)

B-Complex

D3

E-400

Calcium

Ubiquinol (reduced CoQ10)

L.Reuteri Plus (probiotic)

Recently I changed my diet such that my daily main meal consists of (all raw): vegetables, fruits and nuts, all in smoothie form. Periodically I’ll eat protein-rich foods like peanut butter, chicken, dairy products, meat, and so on.

I recently discovered that Turmeric can be a substitute for GERD (reflux) meds (like H2 blockers and PPIs) so I’m excited that I don’t have to take those any more. I have bulbar-type MG and my recent flare-ups are significantly less severe and I attribute that to my new diet regimen which also has me feeling much healthier now that I’ve cut out all processed foods. I take Calcium because I’m on Prednisone. The ingredients of my smoothie (based on my research and a visit to a certified nutritionist) contain all the essential vitamins and minerals that are not on my list above. I can’t emphasize enough how good nutrition can have a positive effect on MG symptoms.

[MikeS]

Prednisone

Overweight

Patience

[MikeS]

I’m surprised that stroke isn’t on the list. Its common manifestation, diplopia, is often the first symptom to appear (as it was in my case and someone else’s here) when MG “starts”. So of course the ER docs thought (as did I) that I was having a stroke when I showed up.

[MikeS]

Basically, when my Prednisone goes up, so does my weight, and visa versa.  I find that I cannot control my hunger/cravings until the Prednisone is below 20mg/day, at which point I can start reducing my caloric intake and excess weight.  This cycle repeats with each flare-up I experience.

[MikeS]

Originally I only had ocular MG. But subsequently all my flare-ups include dysarthria (plus other bulbar-type MG symptoms). It usually starts (if I haven’t talked for a while) after a few sentences. It manifests for me only as slurred speech. If someone isn’t familiar with me, either in-person or on the phone, I always let them know upfront to expect slurring (or explain why I’m already slurring). I try to remember to slow down when pronouncing a word with an “s” as this is the most difficult type of word for me to say. I never let it bother me and nearly everyone else seems understanding and not bothered at all by it. Occasionally I’ll mention that I’m not drunk if I think they might think I am (usually it’s good for a laugh). When I’m in remission the first thing I always do when I wake up in the morning is to say, “She sells sea shells down by the seashore” several times as a check.

[MikeS]

I’m currently taking Prednisone.  I recently started wearing my mask only in public places that are crowded (indoors or outdoors) or poorly ventilated (indoors).  For example, when I go to Target, which is spacious and well-ventilated, I only mask up during crowded holiday shopping days when aisles are crowded and check-out lines are long. I also wear a mask when getting a haircut

I am also wary of getting close to anyone whom I don’t know well, especially if they seem like they might be even a little sick, and will mask-up.

[MikeS]

I’m on Prednisone (30mg) and Mestinon (60mg, 4xday (every 6 hours)). What I’ve finally figured out (for me) is that Mestinon is an hour-by-hour medication because it’s effect kicks in in about 1 hour and lasts about 3 to 4 hours, followed by the next dose at the 6-hour mark, etc. So I go through 4 of these cycles each day, scheduling my meals during the 3-4 hours it’s effective in each 6-hour period.

For me, it takes around 2-3 weeks for an increase in Prednisone to kick in, manifested by the start of improvement in MG symptoms (for me, just bulbar types, I.e., swallowing, chewing, slurring, facial muscles weakness including eyelids) . My most recent flare-up began at the start of April at which time I increased Prednisone from my baseline of 15mg to 30mg. I also adjusted Mestinon dose up to 60mg (4xday every 6 hours) for a total of 240mg/day.

My MG symptoms finally disappeared about two weeks ago. I will start weaning down the Prednisone next week (June 15) at a rate of 5mg/month, until I’m back to 15mg/day (around mid-August).

Today I started weaning down Mestinon by reducing one of the four daily doses of 60mg to 30mg. Each week (except for next week when I reduce Prednisone to 25mg) I will wean another of the 60mg Mestinon doses to 30mg, until all four doses are at 30mg.

I guess the next step, as long as I remain MG symptom-free, is to continue to reducing both meds slowly over time. My Neurologist has fully approved my current reduction schedule above.

Now I have a much better idea about what to do the next time a flare-up starts. Learning how to react to flare-ups by the above method really has reduced my anxiety tremendously!

[MikeS]

I think it’s best to ignore all mentions of a possible cause of Myastheina Gravis. There is no known, proven cause. Yes it’s likely from a defective gene in one of the precursor cell types of the immune system (at least in creation of the ACh receptor antibody type of MG, the most common type). Something (or some things) probably cause a mutation in the DNA of the associated precursor cell causing it to produce the autoimmune antibodies. Except for the possibility that the mutated gene was inherited, only environmental factors could probably be the cause: maybe toxic chemical exposure such as drugs, medicine, pollution, maybe a virus. Kinda like many causes of cancer. Maybe something else, but who knows?! We don’t even know for sure, in many cases, what triggers cause our flare-ups.

I believe my MG was triggered by a shot of Shingrix (a live-virus vaccine for preventing shingles) but I base that on the fact that my first MG symptoms appeared right after the first booster shot (I then refused the second required booster, of course). More recently I learned that vaccinations containing live virus are contraindicated (per MGFA’s Cautionary Drug List) for MGers, so that sort of helped solidify my current belief.

Even the NIH “hints” about a possible hereditary factor, but based only on anecdotal evidence (https://pubmed.ncbi.nlm.nih.gov/7308244/). But so far there is no scientific proof that there is a genetic predisposition for developing MG. If there is, then it would definitely be an inherited genetic trait.

I base all my comments on my educational background and what I’ve been learning about the disease through extensive research since my MG symptoms started in 2020. I strongly recommend that you learn as much as you can about MG, because we all still must be our own advocates first, in order to maximize our daily lives and minimize our suffering. Good luck in your quest for knowledge!

[MikeS]

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]

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]

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]

As with any other MG drug, it may or may not work.

[MikeS]

I agree with Bli shame. I’m only on Prednisone and Mestinon. I have exclusively bulbar symptoms when I get flare-ups. As each flare-up starts I pump up the Prednisone, leave it at that level for as long as symptoms persist. Symptoms abate gradually until they disappear. At that point I start reducing Prednisone by 5mg per month. So far the lowest level I’ve reached before symptoms return is 15mg. You have to go slowly on the reductions of Prednisone, as it takes weeks for the body to adjust, otherwise you’ll throw yourself back into a flare-up too soon. I’m currently navigating my latest symptom-free period and have Prednisone down to 20mg, with hopes of getting lower than 15 mg before symptoms return (if they do, and they probably will, but fingers crossed that I can get completely off Prednisone at least for a while).
Mestinon is a totally different story, as it doesn’t suppress the immune system (like Prednisone) but rather acetylcholinesterase for a few hours with each dose. So I look at Mestinon like I look at aspirin or most over-the-counter drugs: it’s short-acting and wears off after a few hours. (There’s also a time-release version but even that doesn’t last an entire day.) Since I take it every 6 hours I time my meals for those times the drug effect is at its peak (around 1-3 hours after taking) because of the swallowing issues with bulbar MG. Once all my MG symptoms clear up I start reducing (just like with Prednisone) the dose of Mestinon usually about once a week, and only one of the four daily doses at a time. So, for example, if I start at 60mg four times a day, when I start reducing I’ll pick one of the doses and drop it to 30mg and then the following week I’ll drop a second dose to 30mg and so on, until all four daily doses are at 30mg after four weeks. I’m waiting to see, after consulting with my Neurologist, if I should go from 30mg to 15 mg or to 0mg for each of the four daily doses.
So it’s like experimenting to see what works best so that I can be better prepared for future flare-ups.

[MikeS]

What is the source (web site, etc.) you used for learning about the multiple children in a family having MG? I’d very much like to read it. Thank you!
Mike

[MikeS]

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]

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.