MG Ask Me Anything
This is a space to ask questions and share topics for discussion for public AMAs with participants... View more
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Let’s Talk Remission & MG
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Let’s Talk Remission & MG
Q1: Have you reached remission and how’s your mental health ? I’m struggling mentally. I just can’t accept why me out of all people, I’m so drained…
A: This is a tricky one to answer. My symptoms are pretty well managed with medication, especially when I stay on top of my triggers like poor sleep, stress, and getting sick. But I still experience weakness and fatigue, especially toward the end of the day or if I overdo it. And I hear you on the mental side of things. That “why me?” feeling can be so heavy. You’re not alone.
Q2: Does myasthenia gravis musk positive go in remission after taking rutuximab?
A: I’m not too familiar with how rituximab specifically affects MuSK-positive MG in terms of remission, so I don’t want to give you the wrong information.
I personally took Rituxan for gMG for 4-5 years every 4 months and would say symptoms were well managed up until month 3 after infusion. I would definitely recommend bringing this up with your neurologist since they can give you guidance based on your specific case.
Q3: Any latest treatment options for ocular myasthenia which is in remission?
A: I’m also not too familiar with treatment options for ocular MG. I can only offer insight about the remission part. If you’re already in remission, most providers focus more on maintaining stability rather than adding new treatments. Congrats on remission! 😀
💬Let’s Talk About It💬
1. How do you define “remission” in your MG journey? Is it symptom-free, medication-managed, or something else?
2. Do you feel remission looks different for ocular MG versus generalized MG?
✨Let’s discuss in the replies 👇🏽✨
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1 Reply
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Good question. I would have thought that medication managed illlness would already be the optimum, meaning remission.
I feel like I am very slowly moving in that direction. After a 3 year MG journey I no longer dream of a symptom-free life.
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