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UPDATE - Mestinon

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Old 09-15-2013, 01:35 PM #1
KayoKelly KayoKelly is offline
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OMG I am having the same issue! I just signed on because I decided to give mestinon another try after a terrible week of weakness. The first week I noticed a marked improvement in my eye/face droop. I also had a significant energy level increase and also notice my sleep was much more restful. My coworkers even noticed that I seemed much more peppy and talkative (I wasn't dragging along as usual). But on week two, I seemed to be right back to where I started if not worse. I was taking 30 mg in the morning and 30 midday (if I take it too late, I can't fall asleep). I am so frustrated. I would happily trade the side effects (sweating and GI issues) for the increased energy in a heartbeat. Can someone build a tolerance that would need an increased dosage?
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Old 09-22-2013, 05:09 PM #2
Ron B. Ron B. is offline
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Quote:
Originally Posted by Brooketrout View Post
So I have been on the Pyridostigmine and at first it was dramatically improving my eye, but I guess now my body has grown immune to it because it no longer helps. This is a common problem for me with other medications, so I can't say I'm surprised. I was taking 60mg but only half in the morning and half at night. When it stopped working I decided to up the does to one whole tablet of 60mg in the morning and one whole tablet at night, but so far it hasn't helped. I'm pretty disappointed Now I'm back to looking weird again and it's hard to accept that this may be my new reality.

ORIGINAL POST:
Hi Everyone,

After having an MRI, 2 CT's, and numerous blood tests, I still do not have any concrete answers. Although I have tested negative for MG, my neurologist said that my droopy eye is the very first symptom of MG so she has put me on Pyridostigmine which I am starting today. She wants me to take this medication for 2 weeks to see if my eye improves. She feels that it is still possible that I may have MG, but still tested negative because I am in the early stages. To me, it feels like they are grasping at straws. Has anyone else tested negative and then it turned out they had it, or gone through a similar situation?
Hi,
That dosage seems to be low. I take 60mg every 4-5 hours. Plus I take Mycophenalate 1000mg twice a day. When I spoke to My Neurologist he said it wasn't unusual for people to be taking Pyridostigmine every 2-3 hours. So don't give up and give it time to get into your system. It took me a couple too three months to get to the right dosage for me...
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Old 09-22-2013, 05:32 PM #3
ujukmg ujukmg is offline
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Hi there.

Yes ask your neorologist for a nerve conductor test it was the only thing that positively identified my MG, blood tests often show negative. Also, I started mestonin (Pyro) 1 1/2 tablets 4 times a day with a 20mg steriod (Prednisone). It took a good month for any significant results so you may want to ask your doctor to up the dosage. Hope this helps
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Old 09-26-2013, 06:30 AM #4
davew41 davew41 is offline
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Shocked
well we had another visit with the Dr.
Cut the Prednisone to 30 mg every other day tapering down 5 each week til i hit 20mg.

and to start CELLCEPT, now with lambert eaton swallowing even cottage cheese is a mess and he orders the cellcept in 500mg tabs (WTF?) so they ordered me the liquid..


Reading the cellcelpt insert im a bit nervous to even take it right off the bat it tells you it can cause 2 types of cancer, stay out of the sun you can bruise easily etc etc.
anyone else on this combo?
Prednisone cellcept?
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