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...
Background: I am about 8 months newly diagnosed with ocular MG. My symptoms were managed until a month ago, when I had a relentless week of constant double vision. Felt like I was walking around cross eyed. My daily dose of Mestinon was doubled to 120mg 3xs a day. It only lightly suppressed the issue. And so I began my first ever course of prednisone. I am barely 2 weeks in, on 20mg a day for the foreseeable next 30 days.
Like most people, I have a very bare understanding of Prednisone. In my minimal research, I did learn that Prednisone can help the possibility of it generalizing. That benefit alone should be enough.
But in my minimal research I came across far more about the contraindications that makes me nervous about being on this drug (typical internet). Bad for your bones (I take 5,000 ius of D), can make you bloated, maybe nutty or jittery, hard to get off them, cushings, psychosis, moon faced, the list goes on. And I have a (perhaps) baseless fear that I am going to be on a revolving door of, off and on again prednisone treatments for life because they are difficult to get off.
I have to do whatever it takes to maintain a quality of life with this disease. I just hope through shared wisdom I can get a better understanding of this drug and in turn feel better about taking them.
My Questions:
-I was hoping some of you could share your experiences with prednisone. I know there are other medical options, but I want to hear about this drug specifically.
-How long did your courses run and what was the dose? What was the outcome?
-Did your doctor provide an exit strategy? I understand that symptoms may reappear in full force even when tapering off. So my confusion is, I can't imagine you should or can be on corticosteroids for life. How did you and your doctor know when to take you off?
-Do you get off a course and it's like two steps back one step foward? Bad for a time till your body re-adjust to own natural productions?
-It is my meager understanding that Prednisone at best should "calm"/reset our out of whack immune systems? I am hoping that someone could help me understand how it addresses an incurable disease. (Please explain it like I'm in 6th grade)
-I do run 3-4 miles 2xs a week, and unenthusiastically work out 4xs a week at the moment. My diet is maybe a 7 in terms of healthy, 10 being like an organic only macrobiotic dedication. Never gonna happen. But is there anything you've done to help mitigate the bloat that I still seem to be experiencing? Or anything you've done to counter any of the typical side effects that you could share?
-Is there anything you wished you knew about before you started taking them?
Feel free to answer any, all or none of my many questions. I greatly appreciate any experiences people are willing to share! Thank you!
for mgers, the basic treatment is generaly staged with mestidone (pyristygamine generic for mestdone and prdnisone ' mestidone is for control or mg, to be able to function, and perdnisone an inmune suppressant (corticoid steroid
all the oters mentione are drug generally given to organs transplants and may or not help.
i am in my 82 yrs, with 11 1/2 yrs into generalised mg. started in the hospital at 1000mgs daily of mestidone and 200mgs dayli of prednisone , after a week anss been realesed i start drawing down my meds until i reach the minimal doses of 30mgs fo mestidone dayli and 5 mgs of prednisone every other day,
have change my dayli intake food totaly healthy , walk every day 5 miles, do some other excersices but i will explain what will work to get total control of your mg.
you must have total control of your emotions and stress as they are the major draw back for mg.
also you must take iniciatice and control of exerscises as soon you feel tired take a break, i found that walking is the best exersize at least for me
all activities must be under control, do not overdoo.
also you should have a very long conversation with your neuro in regard of meds and where you want to get with your mg.
one thing that i have in my favor is a wonderfull neuro (a woman) which by all means are better than mens, are they are more willing to lessing more to details and not push pills are others
plasma and ivg's are only needed for cleaning the blood in your blody of dead neuro,and get with the infutions newly neurosthis is done as your body can turn for the worst, they have not other function to control mg
since mg is the oldest autoinmune desease (450yrs) i dont see any major improvements done,
in some ways we are the ones whom are in control of our destiny
best of luck
Andre
as i see by your answers, you are taken to manny inmunsuppessantss, , prednisone should be the only one, the others are given but most are for organs transplants and are known to have serious side effects
since mg is the oldest autoinmune desease in the word (dated 450 yrs ago), doctors seems to be very nochalant in this matter, since we do not die from mg, but mostly from respiratory complications altough mg, is secondly recorded. this has mean to me at least that we have to use lots of logic and commun sence to manage our desease,since it look like we are mostly in are own, we experience we tell our doctors , because it is the only way it make sence to learn luckely i have a great doctor (see is a woman) as i prefer to the mens since they are mor dilligent to lessing to one with out getting all sookup as they (men drs) have the tendency to pile on meds working or not.
you in Adelaide should be able to get a good neuro noleagable and willing to work with you.
only one thiok a like to clear all visits are done every 3 to 4 months to explain what we going thru and plan the meds. so dont feel forgatten by them, it is a basic set of steps taken. but do not hesitate to contact them inmediatly if you run into trouble they are there to work with you
best of luck
Andre