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'm new to the group and newly diagnosed with MG though I likely have had it for quite some time. I am now on Pyridostigmine with good results. I am no longer using the wheelchair and have been experiencing fewer weak muscle situations. I am not able to get up off of the floor but I no longer need assistance with daily activities. My neurologist is suggesting that I start on some form of immunosupression in the next few months. I guess I am wondering how much more improvement I could expect after being on immunosupression. Is it really worth the relatively serious side effects? I am now able to walk a decent distance, do all of my housework and I have been able to return to my volunteer work at the animal shelter. I do not have the level of energy I had three years ago but this may be enough for me. Thoughts?
Your question on immune suppression is one that many of us face. We get diagnosed, find that with Mestinon we can do much better and then are told we should go on immune suppression medicine.
You need to talk to your neurologist and understand the reasons. If she thinks your MG is progressing, then immune suppression is what stands between you and death. About 40% of MG folks died in the first 2 years in days before immune suppression was available.
There are some folks who get by fine on just Mestinon, something like 15% of us with MG. They appear to have a milder form or MG than than others -- we all have varying levels of MG and our MG varies from time to time.
Most folks diagnosed with MG have it progress and although we start with mild symptoms they rapidly or slowly get worse. My own went from just double vision to head problems to whole body problems and ER and hospitalization in about 2 months. Mestinon didn't do enough to keep me functioning.
I was 65 years old when diagnosed and decided I wanted to be fully functional rather than partially, so went for the immune suppression my doctor prescribed. It took me about 4 -6 months and my physical strength and functionality was back to almost normal. I took prednisone. It has side effects, but it worked fast and got me functional.
There are other MG immune suppressants, the most often used are Imuran and Cellcept (brand names). They can take a year to work so starting early is important with them.
I started on 3 mestinon per day but was up to 8 per day to function at all before the prednisone worked. Mine progressed fast and the sooner I started immune suppression, the sooner I was getting back to living normally again.
Mestinon does not treat MG, but rather the symptoms. You take a pill, 30 minutes later you can do more and about 4 hours later it wears off. It is a little like taking an aspirin for a brain tumor -- makes the pain go away for a while, but does nothing for the underlying problem.
There is no clear answer on this, as you may be one of the folks who can handle MG with just mestinon. However, most of us can't. And most of us get worse on just Mestinon.
Good Luck
Russ
the druga of choice for mg are mestidone and prednison, mestidone for the control of mg, prednisone for inmunosupressants.
i am 80 yrs old and i am in total control and remistion since july last year, i am at 30mgs, of pirystigmine and 5 mgs of predinsone every other day, doing just fine
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but let me tell you 3 major facts that you need to control for mg
!) total control of stress, and emotions
2) control of your activities not to get excertion upon yourself, as soon you see you get tired, stop what you do and take the road of relaxing
3) you may have to change your life style, oof all intakes .
this 3 facts are the most important as rhey will send you into a roller coast ride, if you allow them to act freely
also i have writtem i new post that should interest you, with the site to visit
best of luck (fighter)
1) total control of stress and emotions