Myasthenia Gravis Support Group

Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...

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larissaw 06/26/2016

When it's time for my mestinon I begin sweating profusely and my spine feels like it's on fire. Does anyone else have these symptoms? My hair is almost wet with sweat and my fingers feel like they are on strings when they move. I feel like a puppet and I can feel my fingers move all the way up to my shoulders. It's the weirdest sensation ever. Does anyone else have these same problems?

Rhanson 06/26/2016

Hi, Welcome to the group!

Your question is hard to answer without a little more information. As your problems sound more like what can happen when mestinon is at its peak rather than when the effects are ending some more information would be helpful.

Generally for most of us mestinon takes effect about 30 -45 minutes after taking it and wears of in about 3-4 hours, unless it is time release. I had heavy sweating about 1-3 hours after each dose. Too much mestinon per dose caused problems for me and so I took smaller amounts more often (60 mg every 2 hours when I needed to be functional). 90 or 120 every 4-5 hours was my prescription, but that was more of a roller coaster than the smaller dose more often

How much are you taking?
How often are you taking it?
Is it regular or time release?
How long have you been taking it?
Are you diagnosed with MG? How long?
What other medications are you taking for MG?

I didn't have problems with Mestinon as it wore off (i.e. 4 hours after a dose) other than my MG problems returned until prednisone worked to control MG. When prednisone controlled my MG, mestinon no longer helped and just created its side effects with no benefit.

Good Luck
Russ

limpnoodle 06/26/2016

I also had that sweating, but not when it wore off, but when at its peak.
And I also had to cut the dose and take more often to smooth out the peaks and valleys.

mw40love 06/29/2016

I also take every 3 hours, even at night, to smooth out dosage.

sailaway 07/09/2016

Hi. Diagnosed Feb 2015 on Mestinon 60 mg 4x a day. Started IVIG Feb 2016 with revamp of medical insurance policies. I believe I went undiagnosed for more than 30 years as symptoms started in legs and always told maybe MS. Respiratory and swallowing symptoms came late and eyes (ptosis and diplopia) last to appear. Mestinon begins to work for me after 20 minutes. I take dose every 4-5 hours. Depending on day and activity, it can start to wear off around 3- 3.5 hours. I have noted some times (less frequent) around 1.5 hours into dose I will sweat, nose will run and I have urinary frequency all at same time in a "spell" . Characteristically and reliably I do have profuse sweating around 4-5 hour mark when I need the next dose. The Mestinon relieves it until I need it again. I am learning there is GREAT variability in day to day side effects etc. Being new to IVIG I am also trying to figure that out too. The first 2-3 weeks after IVIG I can cut back to Mestinon 3x a day. I started cutting back the one dose and increasing time between doses due to increased profuse sweating 2 hours after dose, which seems to help. Still trying to figure it all out. Trying small doses of Benadryl 12.5 mg to treat side effects of Mestinon.

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