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...

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experiences with MG

alfredsr2
alfredsr2

I have been dealing with MG for two years.  During my 2 years I have taken MESTINON (it did not work for me)  I was on 40 mg of PREDNISONE and I am now down to 5mg per day (hope to be completly off early next year).  I have been on 150mg of IMURAN.  I also have had 2 years of IVIG treatments (one a month for 5 day stretches).  My next treatment will be for a 4 day stretch, but will continue on a monthly basis into the near future.  I have been hospitalized several times in the past two years, but all worked out. 


For those who are worried about the IVIG treatment.  I had no ill affects and it worked and still does work wonders for me.  My biggest problem was the prednisone (the weight gain was the biggest side effect).  The other effects were minor in comparison. 


The IVIG is and was no problem.  The MESTINON did not work.  The IMURAN worked.  My point is that you have to keep trying different treatment until you find one that works.  It all take time, and you need to be patient.  Trust your doctor and you will be fine.


I credit my doctor with her aggressive treatment style.  Right now I am in a good place but lately I have been sufferng with muscle aches and pains.  Its getting harder and harder to walk, get up out of the chair, and generally move.  Is that part normal with MG sufferers?  Thank and good luck and MERRY CHRISTMAS.  AL

wskimball
wskimball
Hi Alfred, You are correct, the medicine must be adjusted to each of us. Some combinations work for one but not the other. I have been on 240 mg of mestinon for 6 months now and that was after being on 360 mg for the first 6 months. I am hoping to go to 120 mg per day very soon. Prednisone is tough on the diabetes for me, weigh gain is not. I am already fat, LOL. I have been getting better and better as the weeks go on. The Celcept has do me wonders or at least that is what I am attributing this good feeling to. I can fight through the muscle aches and pains and now go to the store to walk if nothing else. Still have to stop and rest a little and I know not to push too far. I have not been back to the hospital for a year, and that was after plazmapharisis. Hope your holidays are good and The new year brings you some good health. Merry Christmas Al and all.
Rhanson
Rhanson
Good to hear you have been able to cope with MG.
One of the difficulties of getting off prednisone is that when you drop below about 15mg per day, your adrenal glands, which have been sleeping, have to wake up and produce cortisol again. Prednisone stops them.
They don't start up easily. They can cause lots of muscle aches and pains. I think it took me about 4-5 months before I started to feel better after I stopped prednisone.
I distinguished between adrenal insufficiency symptoms vs MG by if pain killers made the aches and pains better. I took a couple of aspirins each morning, sometimes ibuprofen or tylenol to get through that phase of getting off of prednisone. I knew that was going to happen as my neuro had explained it to me, and so I just toughed it out and eventually and gradually the aches and pains went away -- maybe a year before I got off of the pain killers.
Good Luck
Russ