Ocular MG? Which Treatment Has Worked Best for You?

Jazmin. You certainly had a roller coaster ride for meds as well. And IVIG too. Do you have ocular or generalized MG. Getting control and then someone suggesting to start from scratch would be quite unnerving. I have thought of seeking changes to my med protocol but feel quite nervous about having a relapse. My last relapse caused my eyes to close 24/7 for a month and resulted in anxiety and panic attacks. I have had side effects from the prednisone , (just had cataract surgery,) that i am not thrilled about but risking a relapse is not something i am ready to do.
I wish you all the best and success if you try a new approach.
Thanks for sharing, it helps
Good luck and stay well.

It took over two months for my binocular oblique diplopia to be diagnosed as myasthenia gravis, then another few months to find a neurologist and get an appointment. Was prescribed Pyridostigmine 60mg 3 times a day. After a few weeks I decided to up the dose to 4 times a day, and a few weeks later asked the Dr. to increase it to 5 times a day. Double vision is now under control.

I was diagnosed by a neurologist who specialized in MG with ocular MG in the spring of 2021 after symptoms appeared in Oct 2020.
My eyes were completely closed, with severe double vision and both eyes pointing in different directions. I am considered sero-negative and was first started on mestinon which did not help , then on prednisone at 20 mg which did not help so i went up to 60 mg prednisone which brought my MG under control. Tapered down to 20 mg and my symptoms came back. Back up to 40 mg of prednisone and started mycophenolate mofetil 1000 mg twice a day. I tapered my prednisone down to 10 and 5 mg on alternate days and my symptoms came back. Back up on prednisone again and now have tapered to 12.5 mg prednisone with mycophenolate mofetil and my MG has remained stable. Tried adding mestinon again but made no difference. We have maintained 12.5 mg prednisone for an extended period of many months with the plan to try and reduce the prednisone further at some point in the future. Goal is to get to 5 or 2.5 mg of prednisone but this may not be possible.
I have not had any progression to general MG, and have remained ocular since 2020. The early introduction of prednisone may have helped prevent progression.
I have slight flares of eye lid drooping some days but generally my MG is well managed at this point with prednisone and mycophenolate mofetil. No double vision at all.
Has certainly been a roller coaster ride to get control.
Stay positive, there are things that work.