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Pyridostigmine (Mestinon) is My Friend
Mestinon (pyridostigmine) was the first medication I was given with my LEMS diagnosis. Commonly given for Myasthenia Gravis, it is frequently tried for LEMS patients too. My diagnosis happened in a January when it was cold and I was on the treadmill just about every day. I knew my abilities (or lack there of) very well. My shipment of Mestinon arrived on a Sunday, and I began taking it. Monday morning I headed for the gym and treadmill. The result was eye opening. I felt better walking the belt and was easily able to bump the speed up a bit. I’d never felt this good on the treadmill in anytime I could remember. This sudden change in my condition was the first marker that my LEMS diagnosis was real. Do you take pyridostigmine? Many people report stomach issues with this medication and either add food to the dose, or can’t tolerate it. How is it working for you? Have you considered Mestinon in your treatment plan?
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14 Replies
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When I was first diagnosed with LEMS I was not able to get Ruzurgi. My doctor prescribed Mestinon instead. I must say that I am glad this worked for you because it did absolutely nothing for me. After a lot of “going around my thumb to get to my elbow” I was finally able to get Ruzurgi. It took a few weeks to get to the correct dosage, but it has given me my life back.
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@anngailn Glad you finally got on the Ruzurgi. Amifampridine can be a real difference maker. Many of us take a dose of Mestinon with the amifampridine, as there is anecdotal evidence, it enhances the benefits.
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I am on ruzurgi as well and it has helped a great deal. I had added mestinon but it gave me double vision. Anybody else have that problem.
I am also wondering what you do when you wake up in the middle of the night? I can barely walk to the washroom and I have had to put bars around the toilet.
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@joanneevans Joanne, I use Mestinon with my four doses of Firdapse. The last one is 180MG time-release. I was having bad overnight problems with extreme muscle weakness in my left shoulder and right hip. It has worked to alleviate these problems. Are you sure you can pin your double vision on the Mestinon? LEMS is known to cause double and blurred vision.
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Hi all.
I had my Zoom appt with the armory Neurologist today who has agreed to give me a go on the Mestonin even though not officially dx with LEMS. She also is sending labs to Mayo – one panel is Dysautonomia panel and another specialized test checking for neuropathies I think she said. The side effects of this med she mentioned sounds like it would benefit me as one was more saliva (I have dry mouth) and the other Diarrhea (I have severe constipation)
My VGCC was 151.2 from the Arup labs
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I can’t say for sure whether the mestinon is causing the double vision. It seems to happen though when I started supplementing my ruzurgi.
Is it slow release mestinon you are taking?Maybe I will wake myself up at 2 am and take a dose.
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@joanneevans My regimen with Mestinon is one 60 MG tablet with my first three Firdapse doses. The fourth dose is my 180MG tablet with my fourth Firdapse dose to get me through to the morning. This works for me. You should consult your neuro to come up with a plan. For me, sleep is precious. I wouldn’t be intentionally waking myself up in the middle of the night. That’s just me.
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I saw this in October but then I could not find it again. Could this be a separate forum as this drug is also a common one prescribed for LEMS as well as Myasthenia gravis. It is interesting to me that some drugs for MG work for LEMS & the other way around too. Lems is a pre-synaptic neuromuscular junction problem where MG is a post-synaptic problem. I still have no diagnosis but I started pyridostigmine to see if it would help strength. The very first thing I noticed the next day was waking up with less dry eyes and mouth. Then after a couple of weeks, I noticed that it was helping strength. I also just recently started prednisone as I know that helps my strength but depending on the doctor, some don’t like prescribing it.
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@searching4answers good luck with your diagnosis! I do understand getting off IVIG to test your antibodies. Also, if you do a single-fiber EMG to confirm, I’d suggest checking with your doctor a out holding your Mestinon before the test.
I’m sure glad the Mestinon is working for you. Just as a point of interest, there were NO FDA approved medications for LEMS, prior to the approval of Firdapse and Ruzurgi. -
I’ve been on mestinon since diagnosis in 2017. For me personally it does nothing for my muscle weakness or muscle spasms, but has been a blessing for my POTS which can be one of the LEMS dysautonomia manifestations. Helps with my tachycardia and prevents me from passing out.
My only complaint I have is the tablet texture/size. When my LEMS worsened and I developed vocal cord atrophy and dysphagia (swallowing difficulty), I had a hard time getting these pills down. I switched to the liquid form but it’s crazy expensive $$$ like $1,000 per bottle.
But other than that, I didn’t experience any side effects from it at all. 👍🏼
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Checking my 60 mg Mestinon tablets there are indent marks in an X making it east to split in half or quarters if needed. I’ve got a really nice, metal pill splitter which make easy work of splitting, but I’ve not needed to do this with Mestinon.
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Hi RDT
Darn I had an answer typed then hit something on the screen & got logged out! Anyway, I also find the texture & size of the 60mg tab hard to swallow. When I first started my dose was half a tab, then 3/4 a tab. The pill is scored so is fairly easy to cut, even better if you have a pill cutter. My pharmacy gave me one. Anyway I found it easier to swallow the tab in tinier pieces than one whole big one. I also rounded off the sharp edges a bit & licked the powder off my hand so not to waste any. Maybe this might help you but if the liquid is working for you do whatever is most helpful. Everyone is so unique in how certain things work best for them -
Yes, my generic mestinon tablets are scored as well for easy cutting, but each time I did that it hurt. Turns out ENT said I was cutting up my larynx. Since I have atrophy of the vocal cords & larynx with weakness of the trachea from my LEMS, my muscles weren’t strong enough to push it down. I’m even on a soft food diet since I choke so easily & often.
I recently switched back from liquid back to tablets due to the cost. My swallowing therapist told me to coat them in honey before swallowing & that seems to help a bit.-
I’m glad you’ve found something that helps you get those pills down. A bonus in my eyes, honey, which I love. I have occasional swallowing problems as well, but usually, with enough water, I can flush them down.
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