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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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I believe the standard dose (starting) for Myasthenia Gravis is 60 mg 3x a day--so 180 daily. There is room to experiment....
Do you have Myasthenia Gravis?This is correct. I was prescribed, and take, 60 mg 2 to 3 times per day.
Do you have Myasthenia Gravis?
If I remember correctly from my own experience with mestinon, 30 mg 3 times a day is considered a subclinical dose, meaning it's not enough medication to make a difference in your symptoms yet. Doctors start you off on this low dose to give your body time to adjust to the medication. If you started off on a higher dose there's a higher likelihood that you'd experience very unpleasant muscle cramping and other side effects.
When I started mestinon, I was on a dose of 30 mg 3 times a day for a whole month. Then my doctor increased the dose to 60 mg 3 times a day (although some other people here on the forum have had their doses increased much more slowly). I was also advised that, even at the higher dose, I might not feel any effect for several weeks.
So take heart and give your body some time!
I do not have MG (or Lambert Eaton), but every couple of years some doctor re-tests me for both diseases via Nerve Conduction Study and Antibody testing.
I believe the question you want a response to is "how long does it take for Mestinon to show benefits," and to be honest, I can't remember back that far.
If it would be helpful to you for me to share the ways I have benefited from Mestinon, let me know.
I believe the standard dose (starting) for Myasthenia Gravis is 60 mg 3x a day--so 180 daily. There is room to experiment....
Every day for the last five days I’ve felt stronger and better than I’ve felt for a very long time.This all sounds very promising!