Mestinon question
 

Hi there, I wonder if you guys can tell me if this is correct.

1) the amount of mestinon a MG patient takes, says a lot about the severity of the disease (f.e. someone who takes 8 x 90 mg a day has "more severe" MG in comparison with someone who takes 4 x 60 mg a day)

2) the maximum safe dosage a person can take is around 1250 mg a day.
This means that taking 200 mg at once (not timespan) is not likely to cause a cholinergic crisis.

Greetings

I would say “yes“ to your question n° 1 but “no“ to your question n° 2.
I think the max normal daily dose for Mestinon is about half the amount you quote, around 600-700 mg...
Maurice.

I myself thought both were wrong. But I have no scientific evidence, just my thoughts.

1: if someone takes only a small amount of mestinon (in comparison) it can also mean they have a very small amount receptors left, and will have cholinergic symptoms very soon, and mestinon will only help a tiny bit. In this case, giving less or more will both cause weakness. So in a sence, they have a more severe MG because they have less receptors left in comparison to someone who benefits from higher dosages.

2: it leaves the body very soon, so you can't compare the maximum daily dose (if this is 1250 or 600 mg, doesn't matter). Because this is the maximum dose you can take in a whole day, not at once.
But what is the dose someone would expect a cholinergic crisis to occur, I wonder.

The MG Manual has a great section on Mestinon:

No fixed dosage schedule suits all patients. The need for cholinesterase inhibitors varies from day to day and during the same day. Different muscles respond differently—with any dose, some muscles get stronger, others do not change and still others become weaker.

Myasthenia Gravis: A Manual for the Health Care Provider (PDF) - page 17

The Mestinon only treats symptoms. One should take the minimum amount necessary to achieve a relative symptom free experience. It may take a bit of trial and error to get the best Mestinon schedule.

-Mark-

If I take 120 mg, I have a pretty bad result. I guess I should spare you the gory details, but it is bad. :eek::eek:

Hi, Ravenclaw. Good to see you.

It helps to understand exactly what Mestinon does. And what MG does. ;) You might already know this, but I'll put it out there anyway.

Acetylcholine (ACh) is the muscle gas that keeps everyone's muscles strong.

Acetylcholinesterase (AChE) is the enzyme that cleans up ACh when it's done with its job of making your muscles strong.

They both work together to make sure the body has a normal balance of ACh.

You're right that we have fewer muscle receptors for ACh to go into. Some does get in, even with severe damage to the receptors.

Mestinon blocks the AChE enzyme, so that we can use ACh for a "longer" period of time. If you consider two hours long! Mestinon is called a cholinesterase inhibitor.

Mestinon kicks in after about 1/2 hour and then wears off about 2-1/2 hours after taking it. So we get about two good hours of optimum ACh use.

And you are right that too much Mestinon can flood the neuromuscular junction, especially if there is a more severe destruction of muscle receptors.

There is no way to tell, though, how many muscle receptors you have. That is why using Mestinon can be tricky.

100 - 110 mg. is the amount most neuros say is the max for ONE dose. Some push that, but it can be dangerous. At that "tipping point," more won't do you any good.

Why? Because Mestinon keeps AChE from going in and cleaning up the excess amount. That's what can cause a cholinergic crisis. Whereas not enough ACh causes a myasthenic crisis.

ACh is also about supply and demand. The more you do, the more ACh you use up and, therefore, the more you need. So some doctors will say to take a larger dose (i.e., 80 instead of 60 mg.) while you run errands, etc.

The amount someone takes doesn't necessarily relate to the severity of the disease. In my case, for example, I can't take the other drugs (contraindicated) unless I crash. So I take 90 - 100 mg, every three hours around the clock. For me, a consistent dose is best. But that's me! Every dosing amount/spacing has to be tailored to each person.

And it can take a while to know what works for you. The frustrating part is that that dosing can change, depending upon what other drugs you're on, what your activity level is, how you metabolize drugs, etc.

Some people also have stomach upset with Mestinon. That's because you need acetylcholine to MAKE stomach acid! So too much of it for some people causes too much stomach acid. I don't have that problem because I don't have stomach acid. :cool:

And what can make it even more confusing is that the nightshade foods, to a lesser and variable degree, do what Mestinon does. That's why so many MG articles talk about avoiding nightshades.

Caffeine is a cholinesterase inhibitor, too. Have you noticed how they have more warnings lately about caffeine? That's because it can cause an overdose of ACh in people without MG.

I hope this all helps. MG is not an easy disease, nor are the treatment options. Doctors don't often have the time to lay all of this out for patients. They usually talk in more simple terms. They forget that we're all inquisitive and need to know this information.

Funny, Celeste. I like the gory details. ;)

Annie

Don't make any changes in Mestinon dosing without speaking to your neuro first!

Thanks for the easy to understand info on this subject.

I have not had this problem with Mestinon. I have a yogurt every day with my first meal. This change two weeks ago when I replaced the yogurt with a cup of Kefir.

I wonder if it is the active culture in the yogurt and the kefir that helps prevent the GI issues?

-Mark-

Thanks y'all!

I have a special reason to ask this.

I took a double dose by mistake, so I took 200 mg at once. At first I did not notice much, but very soon I started to feel funny.
I was drooling a lot, like drooling cups of water, started loosing my sight in a weird way and my voice got very, very weird. I felt very weird in my head. Are there muscles in your scalp to? It felt like worms or something...
I could still see colours, but focussing was all gone.

Went to the doctor, but they didn't make much of it. They left me waiting, alone. for almost an hour after only measuring my O2 and my blood pressure by a nurse. I felt very weird and weak. But a different kind of weak. When the doc finally came most of it already subsided. I just got MG weak once again.
Reason they didn't check on me faster was because you can take much more mestinon a day.

And yes, it went away without life threatening situations, but still...it was kind of scary. Leaving me like that makes me feel like I overreacted and should've stayed home waiting it to subdue. Come to think of it, that would have been better.

Edit: about the GI problems, never had any with mestinon. Even with the 200 mg I didn't have any. I guess we're just all different.

Ravenclaw, I'm sorry the ER doc didn't know what to do. If that happens again, tell him you're having cholinergic symptoms and might need a SMALL dose of Atropine to counteract it.

Have you ever had Atropine? If you've had an eye appt. you've had it! That's what they put in their numbing drops to dilate the eyes.

There are muscles on your head. I get tension headaches when the head/neck muscles get too weak.

The "worm" thing might've been the Mestinon affecting your peripheral nerves.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC487008/

You did NOT overreact! Even two hours in a cholinergic crisis can injure or kill someone. You could've stopped breathing. So it is absolutely not an overreaction to head to the ER. In fact, if it's a severe situation, there should be a 911 call!

I wouldn't recommend this, because you really need professional help when that happens, but I have used Benadryl on the rare occasion when I took a dose too soon. Your symptoms were not good and you did EXACTLY what you should have!

Speak to your neurologist and get his/her opinion on how to prepare or act in the future. You needed help right away, and the ER doc didn't help you. Ask your neuro to come up with a plan for you if this ever happens again. Some people are prescribed Atropine for times like this. But too much Atropine can throw you into a myasthenic crisis, which is why the ER (usually) is the best place for you.

I hope that helps.

Panorama, The live cultures help, but you are also getting sugar and fat that you wouldn't have in a pill. Only you can decide what works best for you.

Annie

Thank you SO much, Annie.
I did ask if I didn't need a little bit of Atropine, but they said no.
The doc himself did think he knew what he was doing.
But I guess they didn't really get, just how awful I felt.

Days after, I still had issues. Intense muscle pains f.e. And of course, a total MG blow, so a few days 100% bed and liquid food once more for me.

Why Benadryl, it's an antihistamine I believe? I know some of those can make you tired, but does this one affect the muscles? (no, I will not randomly take anything without discussing with my doc, but I am curious how this works)

I think that benedryl has some anticholinergic properties. So it would make MG worse and a cholinergic crisis better. I think.

Celeste is right.

http://pharm09.wikispaces.com/Cholin...ticholinergics

Its tricky to use Benadryl if you don't know how it affects you, because it could make MG worse. I use liquid Benadryl (for allergies) because I can take the smallest amount possible.

I'm sorry you got so bad afterwards. I get that way after having Atropine drops for an eye appt.

Talk to your neuro instead of leaving this stuff in the hands of an ER doc who might not "get" MG!

Annie

I am super sensitive to Benadryl. When I had an allergic reaction to rituxan infusion they gave me 50mg IV and it fixed my allergic reaction, but I could not move my limbs or even speak for a while.

Oh my, that's so stupid if you think of it.
You get a disease, and start with a treatment A.
The treatment A gives a reaction, treated with another treatment B.
And B makes your disease worse.

Anyway, thanks y'all for this information. I will ask my doc (a true neurologist) what to do in the future.

benadryl
 

I have taken Benadryl for allergies. Maybe I need to ask my Nuro, but have never had a problem. I sometimes take 1 or 2 a day of the over counter Benadryl. I will ask as soon as possible.
Thanks
FREDH

I stopped taking the pre-med benadryl for IVIG and felt much better this time.

kathie

Interesting.I got on this forum today because yesterday I accidentally took two mestinon tablets very close together. However, I felt stronger than ever. Now I am wondering if I should ask for more mestinon. I have been so grateful for the increase in strength, but now I wonder what the limits are. Do you just keep increasing mestinon until you start feeling weaker instead of stronger?

There is a limit which most doctor feel is safe and do not have to worry too much about cholinergistic crisis. I think I read somewhere about 540 per day seemed a max safe number. I was up to 660 a day and my neuro did not want to go any higher and ordered IVIG. After IVIG I was able to decrease mestinon again. Many on this site take higher doses which I think are more carefully monitored to ensure they can safely take it. It all depends on how severe the MG and how well you tolerate Mestinon and how well it improved you. I would not play around too much with the dose without talking to your neuro.


kathie

My doctor says there is no upper limit for Mestinon. I take 13 to 18 per day with a Timespan at night. As you can see my dosage varies quite a bit.

13-18 a day? I wouldn't have enough on hand.how is your Rex written?? I need that kinda access. My doc has me on 4x per day an some days it's not near enough...

Wow so I think I will ask for more mestinon then. Do you take prednisone or ivig also?

I can't take prednisone - bad reaction. I had IVIG once but had aseptic meningitis (diagnosed with lumbar puncture) and now 2 neurologists says that based on those results, I am no longer a candidate. I take 200 mg Imuran daily. Dr tried to increase to 250 but I had severe anemia. I take 180 mg of mestinon in the morning and follow with 150 to 180 every 3 hours (sometimes more often). I see Dr Weiss in St Petersburg - previous Neuro was afraid to do anything but I was in bad shape. This works for me but like most here, I was afraid of taking too much. It's been almost a year at this dosage and the Dr is right. I was diagnosed over 30 years ago. I know when I have too much and my Dr understands how experienced I am with this. I can increase or decrease as needed. Don't suffer - talk to your Dr about your dosage.

Jennie, I guess Dr. Weiss has changed his mind about an upper dose of Mestinon then. I saw him for years, and he diagnosed me.

I still hope you'll be careful, even after all of these years of having MG. Not everyone can take that much at a time.

Annie

My dose has fluctuated from 60 to 120 mg 4 times a day and 180 at night. I know when I am getting too much, my pupils look like the size of a pin and I start cutting back.

kathie

Of course I am closely monitored but before this dosage, I was not sure I was going to make it. I specifically asked about an upper limit and he said that there is not one but most people cannot tolerate this much. For now it works but I'll see how I do this summer.

As I go to the neuro on March 19th, I have been experimenting with my dosages trying to figure out what works for me. My opinion is I am taking to much and side symptoms are worse than they should be IMO. When I was diagnosed back in November, the only issue I had was a droopy eyelid. Now with taking Mestinon, Speech issues as well as sore body all the time and fuzzy head most of the time. Last night I went from 60MG to 90 as 60 wasn't cutting it. My current dose is 60MG 4x daily. My body aches were worse this morning. I am now cutting back to 30mg 4x to see if this gets me back towards normal. I just can't see my MG getting so bad in such a short amount of time so I think I am over medicating. This Medication is so hard to actually know where you are with this disorder.

Yes, Mestinon dosing can be tricky. Pdsmith, did your docs say if you had generalized MG? Or was it strictly ocular at the time of diagnosis? It doesn't sound like it is now, though.

Give your neuro a call.

Annie

It was easy enough to diagnose after a head and throat Cat Scan I had at the ER ruled out a stroke and tumors. The Neuro checked my eye by putting ice on it and it got better momentarily. I then had some blood work done the following week and it confirmed that I had MG. At this point, I believe my throat muscles are involved as well now as my wife is saying that my sleep apnea has gotten much worse along with my speech. I have had major work on my palate, had my adenoids and tonsils removed 6 years ago. I can really feel it in my eye and throat tonight as I pushed myself and rode my motorcycle 270 miles to see if I can make a rally next month that is 850 miles away. I did feel better with the lower dosage before I pushed myself today.