Quote:
Originally Posted by EZs Kid
My dad has been on Mytelase for several years as well. It is quite a scary thought that he will have to go on Mestinon. He has tried Mestinon several times and it simply does not work for him.
We are searching for other alternatives. Will keep you posted.
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I am taking Azathioprine 50 mg 4x per day. I also get IVIG infusions every 2 weeks. I'm in a research group at UCLA. My neuro at UCLA is getting me off prednisone which I was taking for several years along with mestinon. My neuro took me off mestinon. IVIG's are SO expensive but I have good insurance and am on SSDI and long term disability from my work (for 5 years). I'm 62 and started with occular issues at about 56. Had a severe crisis last year and ended up in hospital. That is when they started me on IVIG. It makes a huge difference - don't know if this is a possibility for you or any of the folks posted here. May we find a cure - in our lifetime!
