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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Generalized Myasthenia Gravis

AngelsKiss
AngelsKiss

Hi All,


How are you? I am new to the site although I have been reading every now and then since I was last diagnosed with GMG Oct 2016. My journey has been a very long one.


I had surger for Thymoma in December 2, 2016 and I noticed since then it seemes the MG has gotten worse. I am currently on 60Mg Mestinon 4 times daily and I am suppose to start taking Imuran but really scared to take it.


Anyway, it was interesting to read what others have been experiencing.


I have to go out now hence my short post but would be interested to read the posts here and learn from you all.


Have a great weekend.


AK


Rhanson
Rhanson
Hi,
Welcome to the group! Sorry that your MG is getting worse after the surgery.

The reading I have done (I didn't have the surgery), is that improvement is often gradual--sometimes over years rather than months.

Imuran does not take effect immediately either; the time range is 3 months to a year before it helps, so if you are having difficulties, sooner is better than later.

I used prednisone which takes effect sooner to get my MG under control, with the plan to add Imuran later and eventually switch all to Imuran (if it worked and I cold tolerate the side effects). My MG went into remission after a year, and now is almost 4 years in remission.

Good Luck Russ
nnyguy1960
nnyguy1960
My understanding is that a thymectomy can show improvement, but not right away. It can take up to a couple years. My mantra is hit it early and hit it hard. Things can get much worse while you are waiting for things to take effect. I hate prednisone, but the sad fact is that it is effective but is not something you want to be on forever. Other surgical and prescription options take a while to take effect. To me, I chose to live with the short term benefits and effects of prednisone, and use it as a bridge to a longer term solution.
susagoode
susagoode
I am interested to know why MG is worse after your surgery. I realize the surgery results may take up to a year or more but did your neurologist say why this would be?
whales86
whales86
Surgery is a major stress on the body. Any stress surgery personal physical will make you MG worse
AngelsKiss
AngelsKiss
Hi All,
How are you all doing?

So sorry it took so long for me to return to the site.

For a while things got stressful. I am also a caregiver to an elderly mother in wheelchair.

I started working again end of Jan.

All in all Is think I have improved. My biggest challenge is learning to not over do it but it is hard when you have an elderly mother to take care of and work too with no can't support.

I started the Imuran Jan 27 and had a tough time for about 4 months. Really bad joint pain. I switched from taking it in the morning to nights.

I saw my neurologist and she thinks I am doing ok so won't see her again until Jan since the Imuran takes up to a year to work.

Earlier this week I saw my Thoracic Surgeon to get the results of my CT Scan and the great news is my tumor has not returned.

Anyway I am hoping to pop in a bit more frequently when I can.

Thanks everyone for responding

AK