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Ocular MG? Which Treatment Has Worked Best for You?

Do you have ocular Myasthenia gravis or at one point did before it turned generalized?

What treatment, if any, has helped you see any improvement?

If you had ocular MG that turned generalized, how long did the treatment keep your MG at an ocular level/type?

  1. 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.

    1. 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.

      1. It is great to hear your symptoms are now managed!

        -Jodi, Team Member

    2. 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.

      1. thank you so much for taking the time to share part of your story with us. We really appreciate you doing so and being a part of our community. I'm glad to hear you have not had any progression with general MG and that your symptoms seem to be managed well. I can imagine others here can relate to the roller coaster feeling of trying to manage MG related symptoms. Again, glad to hear you are managing well! Please know we care and are here for you anytime. Wishing you well. Kindly, Jessica, Team Member

      2. Wow that was a lot of changes to your meds to endure. Was it overwhelming to keep up with? Sometimes for me I get overwhelmed with all the medication changes.
        I was diagnosed in 2012. I started off with 20mg prednisone and increased until I was at 120mg. I was taking 180mg of mestinon 3x daily, mycophenolate 360mg twice daily, along with IVIG every 3 months. Long story short I was stable when I was doing 60mg of mestinon 3x daily, 10mg of prednisone daily and IVIG every month.
        I recently got a new neuro and he wants to change everything and start from scratch. I'm on a roller coaster of meds and emotions as we find a new plan that works.
        Thank you for sharing your story and your advice to stay positive. Happy road to remission. - Jazmin (MG team member)

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