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 went into full drug free remission from MG with my last dose of prednisone on April 1, 2013. I was diagnosed with it a year earlier, rapidly went from ocular to general,went through the hospitalization early on for breathing problems, went on high dose prednisone and in about 6 months was mostly MG symptom free then another 6 months tapering prednisone and off ever since.
We had planned to begin Imuran about 6 months into MG when I was at 60 mg of prednisone daily so as I tapered prednisone, the Imuran would have time to begin to work. I had chosen that as more likely to be effective for me than the other choices.
At our meeting where we first agreed MG was under control and prednisone at 60mg per day was not sustainable long term and the Imuran/prednisone plan was essentially setup. I had one final question for her.
Me: What chance do I have of going into full MG remission?
Dr. 15-20%
Me How will I know if I am one of those who goes into remission if I start another drug before I taper prednisone?
Dr. You won't. If you want to see, we can taper prednisone to the minimum effective dose over the next 6 months and if it is quite low, maybe 10mg per day, and you can tolerate the side effects at that level, you could stay on prednisone only. If you can taper to 0 and MG doesn't come back you are in remission. You can't start another medication and know for sure.
Me: Mom has taken about 10 mg of prednisone from age 65 and is 90 now. She has tolerated it OK at that level (for polymyalgia rheumatica). I would like to just take prednisone and see what happens. (Mom died at 92).
Dr. Many of my patients with MG continue to take prednisone at low levels long term and do fine without other drugs other than Mestinon. If there are problems we can start an alternate drug in 6 months when we know what happens. Many patients do go into remission for varying periods of time from a few months, to years and some even for the rest of their lives. Remember, for most folks MG lasts the rest of their lives, so we may have many years ahead to adjust or change medicines, and each does have problems, so I support your continuing on prednisone and tapering. But lets try a new way of tapering that has worked for some quite well, that of taking the same dose, but increasing the interval between doses to skipping a day, and then 2 and then 3 very slowly.
Me: Sounds good to me. The odds of 1 to 5 of going into remission are worth another year on prednisone to find out. Otherwise I will always wonder if I am taking something I don't need.
And now 3 years later, I remain in full remission, my bottles of mestinon and prednisone slowly molding away in the cupboard, but handy just in case. Someone has to be the 1 in 5 that has the good luck.
Good Luck to you
Russ
We had planned to begin Imuran about 6 months into MG when I was at 60 mg of prednisone daily so as I tapered prednisone, the Imuran would have time to begin to work. I had chosen that as more likely to be effective for me than the other choices.
At our meeting where we first agreed MG was under control and prednisone at 60mg per day was not sustainable long term and the Imuran/prednisone plan was essentially setup. I had one final question for her.
Me: What chance do I have of going into full MG remission?
Dr. 15-20%
Me How will I know if I am one of those who goes into remission if I start another drug before I taper prednisone?
Dr. You won't. If you want to see, we can taper prednisone to the minimum effective dose over the next 6 months and if it is quite low, maybe 10mg per day, and you can tolerate the side effects at that level, you could stay on prednisone only. If you can taper to 0 and MG doesn't come back you are in remission. You can't start another medication and know for sure.
Me: Mom has taken about 10 mg of prednisone from age 65 and is 90 now. She has tolerated it OK at that level (for polymyalgia rheumatica). I would like to just take prednisone and see what happens. (Mom died at 92).
Dr. Many of my patients with MG continue to take prednisone at low levels long term and do fine without other drugs other than Mestinon. If there are problems we can start an alternate drug in 6 months when we know what happens. Many patients do go into remission for varying periods of time from a few months, to years and some even for the rest of their lives. Remember, for most folks MG lasts the rest of their lives, so we may have many years ahead to adjust or change medicines, and each does have problems, so I support your continuing on prednisone and tapering. But lets try a new way of tapering that has worked for some quite well, that of taking the same dose, but increasing the interval between doses to skipping a day, and then 2 and then 3 very slowly.
Me: Sounds good to me. The odds of 1 to 5 of going into remission are worth another year on prednisone to find out. Otherwise I will always wonder if I am taking something I don't need.
And now 3 years later, I remain in full remission, my bottles of mestinon and prednisone slowly molding away in the cupboard, but handy just in case. Someone has to be the 1 in 5 that has the good luck.
Good Luck to you
Russ
xmas25
What a wonderful day for you!! I hope it continues just as well for forever
Barbel
Wow! It doesn't seem like that long ago. I remember you went to work around your cabin, and you enjoyed splitting wood. :-D I was amazed.
annkemp
I am jelous
deleted_user
good for you!!
Joe-Fodor
I wonder if there's anything in your environment that's helping you -- I imagine you are living a very cozy, woodsy existence with minimum stress (tell me if I am wrong). Being stressed all the time in a dirty old city is probably not conducive to remission! ~joe
brenda2016
So happy for you. It gives me hope for my future.
cgreens
Buy a Wisconsin lottery ticket, even though your profile says you are from Minnesota.
padams96
congrats!
concernedb
Such great news,gives me hope for my husband .He does not use the computer and reading him the posts helps him. Thank you all for sharing.
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