[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 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]

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]

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]

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]

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]

Unexpected

Unpredictable

Uncurable

[MikeS]

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]

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]

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]

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]

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.

[MikeS]

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.