Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
I am posting this for anyone new or not on Mestinon, but also as a record for myself. My Rx for Mestinon is a 60 mg dose divided (30 mg x2 per day). My neuro is looking at this as a trial I think to test whether the drug works at all and if so what the dose should be.
So, here is what happened when I took the first dose, at about 1 pm (with lunch--advised to 'take with food'):
About 20 minutes after taking, I felt something akin to a "flushing" sensation mostly in my head/neck area (no rash).
2 pm One hour later, feeling a noticeable reduction in achiness/fatigue in my shoulders/neck which had been constant. Increased strength in my legs (can rise from a chair without using my arms). Reduced fatigue in my lower arms and fingers which I notice as I am typing these notes.
3 pm. Two hours later, fatigue in neck/shoulders 50% reduced, closest I have felt to 'normal' since the onset of symptoms. Still able to rise easily from a chair without using arms to assist. Ate a mini-KIND bar; still substantial mouth fatigue while chewing.
4 pm Improvement has plateaued but has maintained a 50% reduction in fatigue symptoms. Enough that I can go about preparing dinner! Panzanella salad and potato/leek soup using homemade chicken stock.
5 pm not much change but starting to feel "heaviness" around my neck/shoulders.
5:30 Fatigue/weakness is rapidly returning to my neck/shoulders after I finished dinner prep.
6:30 Pretty much back to where I was before I took the Mestinon.
So... good news, I have made a new friend in Mestinon! And no adverse effects noted so far. I am going to take the remaining piece of the 60 mg tablet before bed and the next 30 mg before I go for a walk tomorrow.
Cheers,
Doug
So, I would encourage you to contact your dr and see if you can get in sooner if at all possible. If you can do a video call that may be even better. It sounds like you really need a consult on your meds, and that can be done by reviewing test results and talking to you on the phone.
Best of luck!!
As I thought, the neuro had started me on Mestinon to see what my response would be (positive response is confirmatory for MG). We agreed to increase the dose to 60g x 3 and add prednisone.
What is interesting is that she is starting me at 5g/day prednisone increasing by 5g every two weeks until I get to 20g and then see how it goes from there. She remains concerned about provoking a myasthenic crisis by starting me out on a higher dose of prednisone. Given the precariousness of going to the hospital at the moment, I agree!
The increased Mestinon dose is doing a good job for me (although the doses still wear off after about 2.5 hours). I haven't really noticed much impact of the prednisone yet but that is pretty much expected at the dose I am on.
Anyway, I hope all is well for all of you folks. Stay well, and out of the hospital right now especially!
Cheers,
Doug
After two and a half years of taking Mestinon, I am still tinkering with my dosages. Other medications, activity level, stress, and hot weather all affect my ideal dosages of Mestinon. I am glad that we MGers usually are eventually allowed to decide for ourselves how much we should take.
- Nan
Thanks for the response. Cheers!
Doug
Thanks for your comments and advice.
I also have an appointment in May but I don't think it is going to happen given the present circumstances.
When I do finally get the appointment, thanks to you I will a have few more searching questions to ask.
Please all stay safe.
Call your neuro or family doctor and tell them you need the prescription for mestinon increased now. Dont' wait, like I did, to end up in the hospital. I was told to take 3 per day-- and followed that with one every 8 hours. When I got put in the hospital for breathing problems, they upped it to one every 4 hours and told me to take at least that much until prednisone started. Then I got the "as needed" up to 8 per day prescription.
Just tell your neuro -- I can't breathe but when I take a mestinon it helps, but wears off to fast. Everyone who gets on mestinon, and for whom it works, eventually gets to the place where they know when they need it. '
Good Luck
Do it now!
Russ