MG Ask Me Anything
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Reply To: Let’s Talk MG Treatments
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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.