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What was the first treatment your doctor prescribed for MG?

Tell us how it worked for you. Did treatment help reduce symptoms? Did it bring any unexpected side effects? Your insight can provide valuable perspectives for other navigating similar journeys.

  1. I'm taking Pyridostigmine its helping open the eye , but I still have some double vision , not as much as I had when I first was diagnosed in 2024, it effects my right eye and on that eye I also have a wrinkle on my retina membrane that makes my vision blurry plus I have macular degeneration so a eye patch doesn't work for me I can't switch eyes because my vision is distorted, so I got prisoms that work great , I still have to rest my eyes if I use them a lot because they are very dry Neurologist want to try me on prednisone but my pcp told me to avoid it if I could because I have copd and when I have a flare up prednisone short term is what they use to treat it she said the more I take the larger dose I' all need and it has some pretty bad long term side effects.

    1. Mestinon

      1. I need to use mycophenolate mofetil once or twice a day along with pyridostigmine thrice a day... This will work

        1. Pyridostigmine was my first medication, which caused a bad rash on my legs so I had to stop taking it, but it was fairly fast acting, took about 2-3 hours for double vision to go away. After that Prednisone, for 2 months, my primary care (pre neurology) had me on 5mg a day, which after 6 weeks, double vision was back. Neurologist bumped me to 20..25..30..35, at 25 double vision went away. I'm still working my way up, trying to get chewing issues under control. The main downside for me with prednisone is insomnia. I can sleep and do sleep, but if something wakes me up at say 4:30am that is it, I am up for the day. I'm also taking a lot of vit D, K2, calcium to counter prednisone bone issues. Eventually i'm going to switch to something else, but my Neurologist wants me to stabilize before trying something new, change one thing at a time.

          1. I appreciate your doctor's approach of gradually adding treatments/increasing doses. Not only does it keep you on as low of medication and drugs as possible, but it is also a good way to be able to track which treatment causes what side effects. It's tough dealing with issues like insomnia on top of everything else, especially when all you want is a good night's sleep. It's great that you're being proactive about your bone health with vitamins and are working closely with your neurologist to find the best approach. Let us know if you have any questions or want some links to discussions about treatments you are interested in for the future!

            -Jodi, Team Member

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