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.
I need to use mycophenolate mofetil once or twice a day along with pyridostigmine thrice a day... This will work
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.
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
My neurologist prescribed pyrodostigmine which was worthless-,did not help at all
I'm sorry to hear you had a frustrating experience with pyridostigmine. It can be incredibly disheartening when a medication doesn’t provide the relief you were hoping for. Have you had a chance to try another treatment since? Jodi, Team Member
Mestinon and prednisone
Was just put on them. I found out on11/12/2024 I had gmg I was in crisis. They did plasma exchange went home after 10 days still weak then 12/02/2024 another crisis did IVIG just got out12/11/2024. Still have some weakness just trying to learn my limits. Meds seem to work so far. We will seeHey there! Welcome to our community. We are delighted to have you join us. I'm really sorry to hear about the challenges you've been facing. I'm sending you compassion and support as you navigate this new journey in your life. Please feel free to reach out if there's anything about MG that you need clarification on or require any resources. We're here for you. I'm glad to hear that the medications are helping so far. Just remember to be kind to yourself during this recovery process. Jodi, Team Member
