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?
Pyridostigmine completely cured my ocular MG and did it within a matter of several days. It's a little less effective against my gMG but still highly useful. Azathioprine used in combination works well in the long term but takes a long time to show any benefit. I use a daily maintenance dose of Prednisone (just 5 mg) because it gives me added strength, energy and ambition.
Welcome to the group! We're so glad to have you here. It’s great to hear about your experience with Pyridostigmine, how it has positively impacted your ocular MG, and that you have found an effective combination of Azathioprine and Prednisone!
Jodi, Team Member
Prisoms
Those taking prednisone for occular issues, are you taking it prn as symptoms arise or low dosage constant. I have been dealing with double vision episodes for about a year. Maybe every 2 months. Prednisone dosage to resolve issues has grown. Now taking 3-4 days of 40 mg before titrating off.
Hey there! I can totally relate to the challenges of dealing with double vision. I hope you find a treatment regimen that works for you soon. Have you ever looked into prism lenses to help with the double vision?: https://myasthenia-gravis.com/clinical/prism-glasses. Wishing you a happy new year! May it bring you peace and improved well-being. Take care!
Jodi, Team Member
I’ve got ocular MG too, and honestly, Mestinon has been my go-to. It doesn’t fix everything, but it helps enough to make the drooping and double vision manageable. Also learned the hard way that pushing myself too hard—like too much screen time—just makes it worse, so taking breaks is key.
Mine hasn’t gone generalized (knock on wood), but my neuro keeps a close watch. They’ve mentioned steroids or IVIG if it ever gets worse, but so far, just sticking with Mestinon and resting seems to keep things in check.
Hey there, and welcome to our supportive community! We are glad to have you join us. I am happy to hear that Mestinon is working well for you. It’s reassuring that your neuro is closely monitoring your situation. Fingers crossed it stays manageable for you!
-Jodi, Team MemberHey, Jodi! Thanks for the warm welcome. It’s great to be here and connect with others who get it. Yeah, Mestinon has been great for me, and having a neuro who actually listens makes all the difference. Fingers crossed things stay stable—appreciate the good vibes!
