MG Ask Me Anything
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Let’s Talk MG Treatments
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Let’s Talk MG Treatments
Q: Will the mestinon stop working after a while? Will i keep needing more is my question?
A: This is a really good question. I think a lot of MG’ers wonder about it. Mestinon doesn’t stop working in the ways some medications do. Based on my personal experience, my symptoms and needs changed over time, and my dosing had to be adjusted. I wasn’t satisfied with the side effects and frequent dosing, and eventually stopped taking it altogether.
You’d have to consult with your provider and ask if you’d need to continue taking it in the future.
Q: I take Mestinon 3 or 4 pills a day… Of course the fatigue is present every day in the afternoon… Sometimes when I am ready to go to bed I realized that I missed my last pil… Should I take the last one even when I am ready to go to bed?
A: I hate to sound like a broken record, but that’s something you’d have to consult with your provider and experiment to see what works for you. Some people take their dose before bed to ensure the medication effects are felt throughout the night, while others don’t.
If you’re noticing consistent afternoon fatigue or feeling unsure about missed doses, that’s definitely worth bringing up with your provider so they can tailor things specifically to you.
💬Let’s Talk About It💬
- Do you take Mestinon/ Pyridostigmine? What’s your dosing look like?
- What other treatments do you use to manage your MG?
✨Can’t wait to hear your treatment plans. Drop your replies in the comments✨
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3 Replies
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I don’t know if it really stops working. Based on my experience and conversations with my doctors, it is might be more a combinatination of how you respond and how your myasthenia progresses over time like with anything where a person takes medication – for example some diabetics like my mom never need had to have her medication dose changed in 30 years while my uncle with same type 2 diabetes could not get on a stable dosage.
Mine had to be adjusted as time passed until I was on a pretty high dosage and they decided to add something else. They added Cellcept since steroids are contraindicated for me and eventually IVIG. There wasn’t many options since I am seronegative.
My regimen is a perfect example of how everyone’s regimen is individualized. Currently I take 120mg of Mestinon 4x a day, 1000mg of Cellcept 2x a day. Last April my neuromuscular specialist was able to get me approved for Vyvgart so I get that infused at home 4 weeks on then 4 weeks off (from date of last infusion, the doctors count it as 8 weeks but they count from date of 1st infusion in the 4 week cycle), during the break between Vyvgart infusions I also have 1 day with an IVIG infusion. Prior to Vyvgart, I got IVIG every 3 weeks but we were at point of every week.
My doctor said typically he would have cut out the IVIG completely and reduced the Mestinon dosage with the Vyvgart. However even though I am having a terrific response to the Vyvgart, it isn’t one where he feels that cutting the IVIG completely or reducing my Mestinon is the appropriate path to take. And honestly, if I don’t take my Mestinon, I know it even with the other medications.
It really is something you have to feel very comfortable talking to your doctor about and letting him know your concerns. This may sound funny but let them know your annoyances too with your treatment, like how often you have take pills or get infused, the side effects, sometimes they can adjust things to make it easier. They don’t want your treatment to become so annoying you skip it, even unintentionally.
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Thanks for sharing your experience and treatment info Denise. It’s always nice to hear how others are managing.
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Currently I take 2 x 90mg of Mestinon retard (morning and evening), 1-3 Mestinon 60mg a day, 2500mg of CellCept and 5mg Prednisolone.
No idea if this is the best way to handle my disease and we have never discussed alternatives. I have decided for myself not to question the treatment as long as I keep on making progress.
And as a matter of fact, I have managed to go from being bedridden back to wlking upright and working from home.
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