Norm

I tried pyridostigmine ER for 3 days, and it didn’t work for me. I had a bad incident of not swallowing.

My guess as to what happened is that the extended release never reached some threshold level of pyridostigmine in my blood. I’m back to taking the regular drug 3, sometimes 4, times per day and am doing well.

I will start the pyridostigmine ER on Monday or Tuesday.

Apparently I am charged the same, after insurance, for 30 or for 60 pills! If the doctor prescribes 2/day, I get 60 for X dollars; if he/she prescribes 1/day, I get 30 for the same X dollars.

Have any of you encountered the same kind of billing?

Thanks Alan. I will get a pulse oximeter.

Hi Amy,
I just texted my neurologist about extended-release pyridostigmine (Mestinon). Waiting for a reply. I’ve been taking 150 or 180 mg every day, but have been having difficulty swallowing late in the day, and wake up late and groggy. I don’t know how well or poorly I breathe while asleep.

Got it. Thanks.

I may add some of their exercises to my daily routine.

They said MGers should only exercise on alternate days. For me exercising briefly every morning is better, unless I’m going to be doing something physical, such as mowing the lawn.

Thanks Jessica.

I found Video #1, but have not yet located the introductory video or the others.

BTW, you can put links in your responses here. The moderators check that there’s nothing harmful, then post your message.

Jessica,

Is that exercise video available online?

My MG did not change much — some more weakness and pain in my arms and shoulders. I continue to taper off of prednisone.

There’s no peace of mind while the brutality in Ukraine continues — and the threat of insane Russian escalation. We’ve bought a solar/crank emergency radio and are working on our emergency plan.

They say covid-19 will remain endemic (regularly found and very common among a particular group or in a particular area).

I wonder if yearly shots will be necessary, possibly combined with the flu vaccinations.

Robert,

One consolation that I’ve found is that, being retired, I can now do things at my own pace. (Sometimes I may spread a 2-hour project over 4 days, etc..) During my working life, there was always the feeling that I should rush.

First thing out of bed, I do a moderate set of stretching and strengthening exercises. My muscles are at their best at that time. And I keep the routine moderate, so that I look forward to it and don’t feel like it’s drudgery.

I include caffeine (about 4 cups of coffee worth) in my morning meals. Then I feel energetic for the afternoon.

Sheila,

Every day I adjust my Mestinon (pyridostigmine) in the evening so that my calf muscles are just shy of cramping when I go to bed.

Mestinon only lasts about 4 hours, so my dysphagia may act up before morning. Seems like a Catch 22.

Troy,

I found this: “Myasthenia gravis itself does not cause pain, but the weakness may lead to non-specific aches and pains. For instance, neck pain may occur because of weakness in the neck muscles.”

which is part of this MG article

I’m having sharp pains in my left should when my arm is in certain positions. My guess as to its cause is…[Read more]

Taking pyridostigmine late in the day led to severe cramps and fasciculations in my calf muscles. Stopping the late dosage stopped the problems.

My tolerance of and need for pyridostigmine seems to vary every day.

I got it. I had a slightly sore arm and felt a little “off” for a couple of days. No other side effects.

I will continue to follow the CDC’s recommendations. I also continue to mask in indoor public spaces, especially since I live in a high-number-of-cases area.

Actually, I look forward to cutting the grass. Due to energy limitations, I spread it out over four days.

I’ve also started watching all the buds on our trees and bushes.
<div>Whan that Aprille with his shoures soote,</div>
<div>The droghte of March hath perced to the roote,</div>
<div>And bathed every veyne in swich licóur</div>
<div>Of which…[Read more]

Caffeine helps. Taking the equivalent of four cups of coffee mid-morning usually keeps me energetic through the afternoon.

I have not had tinnitus with my MG, TGFSF.

Ari, when I had ocular symptoms and would go to Home Depot or Lowes, there was no where to walk — the “aisle” appeared to be as full of stuff as the shelves.

Good luck in your fight with MG!

Hi John,

When I had diplopia, I had to use Nexcare Opticlude bandages to be able to walk around and drive. A patch did not work nearly as well. And my neurologist is guiding me on tapering down the prednisone — right now I take 10 mg or 7.5 mg on alternate days. He has mentioned that I may end up with some dosage on alternate days that is…[Read more]

Dev, when my doplopia got that bad, my neurologist put me in the hospital for five consecutive days of IVIG treatments. Two days after I left the hospital, my diplopia “magically” disappeared, and it has not returned. (I’m on prednisone and azathioprine.)