Quote:
Originally Posted by StephC
Thought i'd share some great news and how i got there.
After 10 weeks of mestinon, 60 mg every 2-3 hours up to 6 per day, 180 at night, three weeks of prednisone at 10 mg per day and three weeks at 20 mg, laast week i had a few days feeling pretty good (colleagues and friends said i was back)
I think i overdid it a bit so thursday and friday i was feeling not so great but sunday i went horsebackriding for first time in 2 months. Also today with doctor approval, i increase mestinon (i felt it was wearing off) to every 1.5 to 2 hours and wow, today has been great! Not that i am running a marathon but relative to how i have felt for the lasT 6 months, great!
I hope i am not just on upswing of the prednisone mood swings they say you can get from prednisone but since i dont think anyone else is tsking mestinon as frequently as 1.5 to 2 hours, i thought i would share.
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I think from the way you describe it that you have a good response to prednisone. Which is great
and gives a lot of hope that you will be one of those who eventually achieve a good and long lasting control of their illness.
At the same time, I am not sure it is a good idea to increase the dose of mestinon (even thought I can fully understand why you are tempted to do so).
Not because I am too concerned about a cholinergic crisis (you would have many signs before you go into that) but because it gives an illusion of doing better than you really are.
As I explained in another thread, what mestinon does is recruit more AchR. (we normally have a surplus of them). This means that next time you want to do something you will have even less.
Further more (and this is the wisdom of my occupational physician) people will be very glad to see you better and doing more (mostly at work) but will also be very disappointed when you can do less. They can adjust to a fairly constant decreased level of function, but not to an up-down level of function.
Taking more mestinon and having a seemingly better level of function and then going to a less good level again (even if you don't crash) will be confusing and frustrating for you and everyone.
So, with this illness it is much better to slowly recover and not confuse your body, yourself and those around you.
And this is the wisdom of my neurologist who always says that in MG he doesn't like dramatic recoveries, because they are many times followed by dramatic worsening. He much prefers a very slow and gradual improvement.
At least from my personal experience this is very true.