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 celebrating two years of full remission from MG this week -- the last prednisone I took was at the end of March 2013.
May 2012 I was diagnosed with ACHR + myasthenia gravis and after starting with double vision and ocular mg, within 3 weeks was in full MG and in the hospital with breathing problems.
MG made it so chewing, walking, talking, typing, etc was very difficult. I had been having difficulty for a few years before the actual diagnosis, finally made by my eye specialist when one eyelid refused to stay open and I had persistent double vision.
I was offered IVIG treatment when I was at the worst, but didn't want to tie myself to hospitals and treatment until absolutely necessary.
After 8 months of treatment with prednisone (high of 60mg/day) and mestinon most of the MG symptoms having disappeared and I began tapering prednisone to find the lowest effective dose. At 30mg/day it some came back, so stalled there for a few months and then tapered on down, going to alternate day and then every 3rd day, 4th day and 5th day still at 30mg until finally at the end of March I took a dose per week.
As of April 1, 2013, I had tapered off all MG treatment and have continued in full remission since then with no additional treatment. The statistics show that about 15% of folks with MG go into remission of varying lengths from months to years.
I am 68 years old and have gained back much of my strength and functionality with no lasting effects from the year of disease and treatment. I have no idea how long the remission will last, but am hopeful it will continue for years rather than months.
During the three years since diagnosis, I have followed many friends here on dailystrength, some who have done well, some who have passed away and some who are still struggling.
I have never met another person with MG in person. We are that rare! My Mayo neurologist tells me there is no way of predicting if or when MG will return for me, so that in the meantime I should enjoy the good time.
Two years of normality almost lets me forget MG's misery.
Good Luck dailystrength friends.
May 2012 I was diagnosed with ACHR + myasthenia gravis and after starting with double vision and ocular mg, within 3 weeks was in full MG and in the hospital with breathing problems.
MG made it so chewing, walking, talking, typing, etc was very difficult. I had been having difficulty for a few years before the actual diagnosis, finally made by my eye specialist when one eyelid refused to stay open and I had persistent double vision.
I was offered IVIG treatment when I was at the worst, but didn't want to tie myself to hospitals and treatment until absolutely necessary.
After 8 months of treatment with prednisone (high of 60mg/day) and mestinon most of the MG symptoms having disappeared and I began tapering prednisone to find the lowest effective dose. At 30mg/day it some came back, so stalled there for a few months and then tapered on down, going to alternate day and then every 3rd day, 4th day and 5th day still at 30mg until finally at the end of March I took a dose per week.
As of April 1, 2013, I had tapered off all MG treatment and have continued in full remission since then with no additional treatment. The statistics show that about 15% of folks with MG go into remission of varying lengths from months to years.
I am 68 years old and have gained back much of my strength and functionality with no lasting effects from the year of disease and treatment. I have no idea how long the remission will last, but am hopeful it will continue for years rather than months.
During the three years since diagnosis, I have followed many friends here on dailystrength, some who have done well, some who have passed away and some who are still struggling.
I have never met another person with MG in person. We are that rare! My Mayo neurologist tells me there is no way of predicting if or when MG will return for me, so that in the meantime I should enjoy the good time.
Two years of normality almost lets me forget MG's misery.
Good Luck dailystrength friends.
are you on any treatment at all?
like cellcept or anything?
I am so glad you posted because I am doing so well too but I am on cellcept and prednisone...it might be time to try to get off those again.
Thanks again for posting.
I am on no mg meds for 2 years. I only took prednisone and mestinon 1 year and never tried alternatives
Thanks
Alix
Ann