Question about how Mestinon works
 

I was wondering about how Mestinon is used up. Does it stay active for a certain period of time, or is it dependent on how active we are while it is in the system? I was wondering, because, since I am on a limited amount right now, I didn't want to "use it up" on unneccessary movement if that is the case.

Thanks,
Linda

Hi Linda,

Mestinon (pill) takes about 20 - 30 min to 'kick in'. On average, it lasts for 4 hours. For me, I get peak effectiveness in the 1 - 2 1/2 hour window.

You are right about the effectiveness being different depending on what you are doing. It's not necessarily that you 'use it up' - but rather your activity level, stress, heat, hormone levels, what you have eaten, other drugs you taken, etc. are taxing you more than on a day when you're sitting around the house in the air conditioning watching a movie drinking a cold ice tea!!

What you don't want to do is take more Mestinon looking for it to take away the heavy, tired muscle feeling...since too much can get you in a bad place too. There may come a time when you and your neuro will adjust your dosage based on experience and activity considerations. Right now, think of this as setting your baseline.

Re: food & drugs. There are lots of things that can influence MG (not Mestinon). Example: some antibiotics are contraindicated, caffine helps, alcohol can make us weaker, etc.

Hope this helps. Search some of the older posts for Drugs and Food threads. There has been much discussion about both in just that last few months.

Thanks, SueV
I was not looking for a ticket to do whatever I wanted as long as I had enough Mestinon. Just trying to understand how it works. My hubby had Addison's disease and was on hydrocortisone and florinef, which had to be adjusted according to his activity level, stress, emotions, illness, dental work, etc. Any stress had to be taken into consideration, which was really hard to get across to medical caregivers, of all people.
What I want to do is forego non critical activities and conserve energy for critical ones and just needed to know if this was how mestinon operates in the body.
Ironically, except for the localized weakness, his diseased behaved a lot like MG does. Too little or too much meds both being a bad thing.

Hey, Linda. I'll give you the scientific reason. ;)

The body has a lot of "checks and balances" systems in it. Like when you're dehydrated, the antidiuretic hormone kicks in and helps you absorb what water you do have in your body. If you're overhydrated, it backs off and lets your body get rid of the fluid.

In MG, antibodies attack the neuromuscular junction (NMJ), where the nerves and muscles come together. You get either damaged or destroyed muscle receptors, where the acetylcholine (ah-seat-ill-co-lean) is supposed to go in to make the muscles strong.

Acetylcholine (ACh) is the "muscle gas" that makes everyone's muscles strong. When ACh is done with its job of making our muscles strong, there's an enzyme called Acetylcholinesterase (AChE) that comes along and "mops up" whatever ACh is leftover.

Mestinon is called a cholinesterase inhibitor. It inhibits that AChE enzyme, so that we can use what acetylcholine is in our NMJ for a longer period of time.

Too much of that muscle gas and our NMJ gets overloaded and we get weaker. That's what can cause a "Cholinergic Crisis."

Too little muscle gas or other treatments and we can get a "Myasthenic Crisis."

For some people, they can take a steady dose of Mestinon only a few times a day. I do better on 90 mg. every three hours, round the clock. I don't even need to look at a clock to know what time I need it, though I write down all of my doses/times anyway. I can feel it run out. Some people take an extra dose when they run errands. I usually take an extra 10 mg. or so when I do that and then after I get home.

It takes awhile to get used to the drug and to know what works for you. Just keep having a conversation with your neuro about it. I'm sure he would really like to know about the dramatic response you are getting. Mine sure did!

Does that answer your question? Sue already gave the answer as to what variables are involved in how effective it is or not.

Give yourself time. Revel in feeling better! I don't know what I'd do without Mestinon.

Annie

Thanks, Annie for the information.
I have already noticed that the benefit of the mestinon is running out too soon in my case. The neuro prescribed 60 mg 3Xday, but even though it is working, there is a period when all my symptoms are returning. So I started breaking the tablets in half and taking them closer together.
So far this is working better for me as I am not experiencing the extreme weakness before it is time for the next dose. Yesterday I was having a lot of trouble swallowing, so I decided I would try this and if the swallowing was still a problem today, I would call someone about it.
I have taken two doses of 30mg today and so far have not experienced swallowing problems or return of any symptoms between doses. I think my body needs a steadier low dose to function better without the peaks and valleys. I will be calling and reporting this experience to him.

You say that you take yours every three hours around the clock. Do you wake up to take it? Or do you take time release?
I appreciate all your help and concern more than I can say. I don't know what I would do without all the help I have been getting from people like you.
Thank you so much,
LInda

Linda, You really need to talk to your prescribing doctor about any change in dosing! I don't feel comfortable with recommending any changes for anyone.

My diagnosing neuro (not my current one) does not really like Timespan. The release of dosing can be to "iffy." Since I can only have Mestinon, my MG management plan is different and needs to be consistent.

My body literally wakes me up with either shortness of breath or other symptoms at night. I have a "loaded" syringe of Mestinon syrup at the ready, so I can take it and fall back asleep.

What I do is not what you should follow! You're early on in this process and need to take things relatively slowly, unless your neuro says otherwise. Please give him a call and talk it over.

I'm glad the drug is working for you.

Annie