Hi Again
 

It has been years since I was here...and I need you guys. I am on Pred and Imuran for the thirteen months and have started tapering the pred and am having MG symptoms--ptosis and diplopia. I am just so sick and tired of being sick and tired. I don't want to be on the pred anymore-I miss my body and my face and I am just not sure all the side effects of immunosuppressants are any better than dealing with MG fatigue and symptoms. I'm supposed to call neuro if my symptoms get worse but I don't want to bump up the pred again...now on 30 mg even days and 10 mg odd days. I've had MG for 40 years, diagnosed at age 11. A long time and have managed my disease so well until last year. Oh, I am just so tired. I just need some encouragement!:(

Hi Dawn. I totally understand the sick and tired of being sick and tired. Vent. Let it out, rant and roar :D. I don't know what encouragement I can really give except a virtual hug... so :hug:

Hi Dawn,
welcome back, just unfortunate its under these circumstances.

I know what you mean by being sick and tired of being sick and tired. Its frustrating!!!

Are you on mestinon?
I do really understand not wanting to ring your neuro, I have been there before, but if you are getting worse, better to sort it out sooner rather than later.

I can't imagine how frustrating it must be to have been able to manage your mg so well, and now having to cope with all your symptoms. Like Brennan said, vent, its a great place to do it, we all know where you are comming from!!!!
Everyone here is wonderful, supporting and helpful, they've helped me out more than once.
take care
Kate

Dawn,
I understand your frustration. It is best to just let it fly. This forum is an excellent for vents whenever you need to. I know what you mean about wanting your face and body back. We had my mother's birthday party last week and I was just looking at some photos, I did not recognize myself. Somebdody should have told me that I have turned into the pillsbury doughgirl. I am on a taper now so hopefully I can start to get some of this weight off soon.
You have managed this disease for forty years, my hat is off to you. I hope that you get off the pred and start to feel better soon.
Take care ~ Melanie