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What dose of Mestinon (Pyridostigmine) and how often has worked well for your body?
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60 mg 4X plus 2X Azathioprine daily has worked well for many years. However, just recently, I seem to be slipping downhill. I am experiencing the worst that those of us can experience, and that is increasingly weakening muscular strength in my diaphragm. I can’t walk even a city block without needing to stop and sit down 3 times during the walk. I can’t climb a single flight of stairs. My neurologist has set the wheels in motion for me to have a breathing study. It’s not the end of the world, I just will have to start wearing oxygen. I’m 81 and I have gotten this far without it so I can’t complain.
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I have been stable on five Mestinon per day for several years. I crept up from an initial three to four and then five to deal with specific symptoms: a lunchtime slump and then breathlessness in late afternoon. The extras worked for me. However double vision was not improved by the increases, but was partially ameliorated by the addition of immunosuppressants.
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60mg 3x a day
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60mg 3 times per day. reduced from 4mg 2 years ago. it was reduced at my request. no symptom change. looking for to reduce my medications. doctor did not make change. she has not contacted me in 2 years. i made contact.
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I haven’t read all the replies so hopefully there is a disclaimer that no dosage changes should be done without a doctor’s order. MG is different for all of us and what works for one may not work for another.
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I began with 60mg pyridostigmine 4x daily 10 months ago; no improvement. Added IVIG every other week; no improvement. Added 250mg mycophenolate 2x daily in January, increased strength of IVIG; continued to decline. Increased mycophenolate to 500mg 2x daily and added 180mg pyridostigmine ER 2x daily and I FINALLY stopped worsening. Now I can no longer get the 180mg ER (manufacturing shortage) and I am backsliding. It’s a shame that I finally found a regimen that offered some slice of “normal” and then lost it.
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Mestinon worked incredibly well for me. AchR positive. I was started on 180SR daily, then started developing some chest pains, and eventually moved to prednisone.
A pity since it was very fast acting and gave me almost no other side effects (other than vasospasm).
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Pyridostigmine 60mg 4x a day. It helps but I wish I could walk better, see w/out double vision, still have muscle and fat loss, dizzness, I swallow better, bite my mouth less. Wish there was something better!
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Originally 3×60…but upped it to 4 times now. Also on Cellcept…question, somebody said their Cellcept eventually stopped working….how can you tell?
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Pyridostigmine 60mg 2x a day. I have mild symptoms and was only recently diagnosed with MG via blood test markers. Some days there is slight blurred vision and now noticing fat and muscle loss. Since i have just found out about this disease, I do not know what to expect.
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