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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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Which Immunosuppressent??
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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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180mg ER 2x daily
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I take 4-60mg of Pyridostigmine a day and the best brand for me is by Major Phar. it gives me less bloating, gas and diarreha.
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I take 120mg of mestinon 3 times a daily for my MG.
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I’ve been on Mestinon 60mg four times a day since I was diagnosed about 12 years ago. So far it’s worked well at controlling my symptoms. I had a Thymectomy in 2014 so I think that helped the drug in controlling things. Had a couple of relapses 6 or 7 years ago but luckily supplemental IVIG treatments help to settle that down.
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Pyridostigmine 60mg 3x a day last few years, up from 30mg 3x. Lately more fatigue affecting walking and activities, which I think is due to stress and summer sun, as migraines are back somewhat. In the am it’s hard to get out of bed for dizziness and fatigue. An hour before a dose I get the fatigue, lid droop, a little double vision. Sometimes breathing and swallowing issues in the afternoon, and hard to hold head up.
I take a collagen and protein powder in my decaf coffee 3x day so my weight has stabilized from 114 to 121 lbs now. Having sores inside my mouth again, which happens a month or two for a few times a year, not sure why. Have an appointment with my GI dr next month.
My MG neuro didn’t change the med this year again so I guess I’ll just poke along as usual and see how it goes. Summer is usually the worst so if it gets bad I’ll call her and see if I can take an extra dose but I usually just stay inside and rest. I’m already on 2 seizure meds for those and headaches so she’s not keen on changing my MG meds. August I’m going to see the grandkids and I’m trying to rest up for that now lol
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