As most of you are aware of to the extent of boredom of my finding out I have Myasthenia Gravis (MG) last May, I will pass on the latest news.
After nearly a year over which I got quite weak and then, taking high doses of prednisone, much better by December, although messed up other ways by the prednisone, since January I have been gradually reducing the amount of prednisone I take each day.
The goal was to reduce prednisone until the MG muscle weakness came back. The good news is that I have reduced prednisone to zero (at zero for the past 3 weeks) and so far MG has not returned and I am almost normal physically again. I say almost, because when you take off 6 months when you can't really do much following another year or two of limited activity because of the leg and knee problems, getting back to full activity requires a lot of muscle rust removal.
For the past 3 weeks I have been not only off prednisone, but very active doing maple syruping. It has gone well. I do have lots of muscle aches, but they seem to be the kind that come about from prednisone withdrawal as well as using muscles that have been idling much too long. I figure I will make it through the last 3 days of the maple season--we pull the taps on Saturday when the weather gets in the 60s and sap spoils quickly.
15% of people who get MG go on to a remission that can last the rest of their lives (or maybe only months) where they don't have to take drugs to lower the immune system. Right now, it looks a little like that may be happening to me. However, I really have to wait a few more months to know for sure. In any case, I do know that if it comes back, I can beat it back by taking prednisone or something else to lower my immune system to stop it from making antibodies that attack my own muscles.
MG was bad! The treatment, prednisone was bad! But at the moment I am OK, at least as OK as an overweight out-of-shape 66 year old should expect to be.
And to top it all off, my mind is tarp as a shack!