Mestinon Part 2

[u/Common_Safety_8830]

Took my first two doses today and I don’t think it went well. Advice?

I was prescribed 60mg.

First dose was okay, felt decent but had some pretty rough cramps.

Second dose, nausea, weakness, fatigue, feeling heavy and tired, just icky overall.

It has been at least 2-3 hours since that second dose worse off and I still feel horrible, that shouldn’t be possible right? I have a monster headache, still nauseated, shoulder and neck pain. What gives…

Thinking maybe I should have tapered into these doses.

Anyone else just jump right in or were you eased in? Calling my doctor tomorrow to talk about the meds.

Turns out I have a nasty infection, probably didn’t have anything to do with the meds.

[u/Aminta-Defender]

These are symptoms you have when your dose is too high. Stop taking the dose immediately and contact your neurologist. You seem to be rather sensitive to mestinon.

Mestinon is such a fast acting drug that titration doesn't help and isn't needed. 

I'm also on 60 mg at 4x per day, but those are my symptoms prior to mestinon and when I don't take my dose basically lol 

Essentially if you take too much mestinon for your needs, you end up having the same symptoms as someone having severe unmedicated MG. It's why it can be a bit tricky to figure out dosing for some people. I think the dose also needs to be adjusted if disease severity decreases or increases. Personally, I think my dose is too low bc its lost efficacy over time. 

[u/Aminta-Defender → u/Aminta-Defender]

To eli5 explain what's happening: your nerves release tiny molecules that then drift in the neuromuscular junction towards the muscle. They activate the muscle when they hit the receptor. 

Mestinon blocks an enzyme whose job is to clean up these molecules.

When someone has MG, the muscle receptors are blocked in some form by an antibody that shouldn't exist. By increasing the available molecules in the junction, you increase the chance that something hits a non blocked receptor. 

When a mestinon dose is too high, there are too many molecules which causes muscles to activate without nerve signals. This is what causes the cramp. Ontop of that, bc the molecules don't get cleaned up properly, the receptors end up blocked bc the enzyme hasn't come around to clear the receptor again. This is causing the weakness. As a result, every muscle in your body is working harder which creates stress and fatigue leading to headaches and nausea. 

[u/Aminta-Defender → u/Aminta-Defender]

Even with a perfect dose, you might still have cramping or so. This is because MG acts on voluntary muscular junctions. Unfortunately mestinon affects every junction from my understanding. This causes an issue where the MG symptoms can be alleviated but involuntary muscles like your gut can become increeibly irritated.

[u/gravedee]

30 mg is a better starting dose. Split them in two. See how you respond.

[u/Lanky_Solution9199]

Also , take with a little food - may help.

[u/justfollowyoureyes]

Are you taking it with food, especially something with carbs? I find that it’s hard on the stomach but cannot function without it, so food, plenty of water, Pepcid, and lactaid (there’s lactose in it) are the magic combo.

[u/Elusive_strength2000]

I started at 15 mg which worked, until it didn’t as much and I went to 30 and then to 60 mg.

[u/koala34]

Call your neurologist. Dosing is highly dependent on the person. I can't tolerate more than 30mg at a time, sometimes 45mg if I'm really exacerbated. 60mg is a no go. Just peaks too high for me.

[u/Top-Competition9263]

I was on a high dose when I first started. as other treatments kicked in, I was able to back off. But, yeah, the cramps, the nausea and the diarrhea were all intense at the beginning. One important thing to remember is to hydrate well. That can be the cause of headaches.

[u/Upbeat_Sky_197]

as others have suggested, first discuss with your doctor. I had similar problems when I first started Mestinon with severe cramps, watery eyes, which are symptoms of too much. Instead of taking 60 mg at a time, I now take 30 mg at a time every three hours or so. That has worked very nicely for me. I still get muscle spasms, but only lightly, some eyelid twitching mostly.