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?
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!
Thanks for reaching out. I’ve since had a relapse of my ocular symptoms. After a few months at 12.5 mg prednisone, things fell apart again. My eyes were closed tight 24/7. Double vision as well. Had to tape eyes open again. This time my symptoms caused panic attacks and bad
anxiety which I have never experienced before. I also started have minor seizures during the relapse but don’t know if there was any link to the stress or myasthenia. The seizures are under control now. My neurologist put me back up to 15 mg which eventually got things back under control. We then tapered at 1mg drops over many months. I am now at 12 mg and will see how it goes. Trying to get to below 10 mg at least. I have been working hard to lose weight/prednisone weight in the hope that less weight might have an affect on how well the prednisone works. My neurologist has discussed IVIG as an option if we can’t get to a safer dose of prednisone this time.
My eyes were great at 15 mg prednisone but my neurologist is not comfortable at that dose for long term. I have already had cataracts and bad irritability as a result of prednisone. So still trying to get to a stable med protocol.
Trying to stay positive. I remind myself how lucky I am to just have ocular symptoms. It’s been 4 years so not likely to progress. I am lucky to have a wonderful neurologist who specializes in myasthenia. He is easy to talk with, supportive and knowledgeable. And my wife is very supportive as well. The irritability has been hard on her. I think it’s important we remember that myasthenia affects the people around us as well.
Again thanks for checking in. It’s helpful to read the various experiences people have.I'm really sorry to hear that you've been going through such a challenging time with your ocular symptoms and the side effects of prednisone. It sounds like it is weighing quite heavy on you, especially dealing with the panic attacks and anxiety on top of everything else. Understandably, this could be overwhelming. Here are some articles and discussions with tips about managing anxiety that you may find helpful: https://myasthenia-gravis.com/depression-anxiety, https://myasthenia-gravis.com/forums/managing-stress-anxiety, https://myasthenia-gravis.com/living/positive-attributes, https://myasthenia-gravis.com/living/pain-and-emotions, https://myasthenia-gravis.com/living/changing-negative-thoughts, https://myasthenia-gravis.com/living/box-breathing-technique, https://myasthenia-gravis.com/living/happiness-effects, and https://myasthenia-gravis.com/living/finding-therapist-tips.
---
It's great to hear that your neurologist is working closely with you to find a stable protocol and that the IVIG option is on the table if needed. Finding the right balance can be a time-consuming process and drawn-out process. You're doing a great job focusing on the positive things, like having an excellent neurologist and a supportive wife. I think you may relate a lot to the following article: https://myasthenia-gravis.com/living/impact-on-spouse. We're here for you!
-Jodi, Team Member
These medications helped with double vision?
Closing my eyes, no tv, no reading and just closing my eyes to the world.
