Quote:
Originally Posted by KJARVIS
Thank you Brian,
Here in the UK the whole process is very slow and I have to wait months to see anyone. China was super fast, but alas I had to leave. A Venezuelan friend of mine told me that it takes a bout 2 weeks for Mestinon to work properly. "It needs to accumulate in the body" Is this right? Most of what I read here suggest it is very quick acting. Do most people have to see their physician before changing their dose? Some people here seem to change their doses. Has anyone been given instruction if and when to change it? If I wait for my next UK appointment here in the UK I will have finished the course I was given from China long before! Is it OK to just go from 380 mg a day to 0 mg? Kev.
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Hi Kev,
I'm in Canada, similar systems but I have a fantastic gp who steers me through the red tape and gets things done for me. He does little actual looking after me, checks my bp, checks my weight, refills prescriptions but he is absolutely amazing at getting me in to see who I need to when I need to for anything.
If you find your symptoms returning or worsening (especially after you finish your Rx from China) go to the nearest emergency room. I'd not tell them you have or think you have MG until you can get an official diagnosis, but that you have these symptoms and basically what you've told us here.
When I first started taking mestinon, I went from not being able to swallow to eating a great steak dinner in about 30 minutes.... first pill. I disagree with the needs to accumulate. The effects wear off entirely within 4-5 hours in me.
I tweak my dosage when needed, but I've been on it for almost 5 years now. I know how my body feels when I need another pill or will soon. Also, I've worked with my gp and neuro to understand what they recommend and how to go about doing it. My Rx actually includes an extra pill per day to take at my discretion. My dosage is lower than yours 120 is a bit high as a starting point ... I've worked up to 120x4 during bad bouts and back down to my normal 60x3 when I'm not having a rough patch. But again, not my place to set your dose.
It is ok from a drug perspective to go to 0 immediately on Mestinon, I've done so in preparation for additional tests in the past. From a treatment perspective, I'd not want to be without mine.
Cheers,
Brian