Mestinon trial - am I doing it right?
 

To review - I fluctuate between 3 states: almost normal, painful muscle spasms, and weakness. Doc thinks it's not MG, doesn't know what it IS. Gave me a trial of Mestinon just in case, but he didn't discuss with me how to use it. Rx written for 60mg every 4 hours.

First time I took it, I was feeling almost normal, took 60mg. 30min later, was weak, brain felt drugged, and pupils got tiny. OK that was wrong!

Second time, I waited until a severe weakness episode, and took 30mg. 30min later, eyes popped open and I could get out of bed and do housework. BINGO! I thought I'd found the magic bullet.

Next 4 times, I took 30mg when my eyes were droopy, but I didn't feel terrible overall. Went straight from ptosis to spastic eyelid closure, had some GI side effects.

Next time, 30mg during a bad weakness attack. Eyes opened a little for about an hour, but I was still down for the count. Repeat in 4 hours with no benefit.

Next day 60mg with bad weakness attack. No benefit, GI side effects.
Today 30mg with weakness; no effect.

Any recommendations?
tatia

Sigh. Sounds like a severe case of Mestinon Confusion Syndrome. I have been having abortive attacks of MCS for two years myself. I'm sorry it's so unclear. I guess you could try 15mg for mild weakness and 30 for severe weakness.

When I take too much Mestinon, I twitch.

Reading your account, I see there was only one time when you got a really good response. The question is: do you ever get suddenly better after 30 minutes like that when you have an episode of weakness? If so, then given the other trials, I'd put that one good response down to coincidence. If not, then...well, then it's very confusing.

Abby

Tatia, The first time you took it, you OD'd because you took another 60 mg. 30 minutes after the first one! Is that correct?

Your doctor should've been more specific. What my MG expert told me is that starting out with a lower dose, like 15 mg., once or twice a day is a good idea. Then you can slowly build up the dose to see how your body responds.

More isn't always better with Mestinon. And DO NOT take it sooner than 4 hours in between doses! You could end up in an MG crisis, even if you don't have MG.

There will be plenty of time later to figure out if you have MG, get an expert's advice (a real doctor) and go from there.

How effective Mestinon is depends on a number of factors: How weak you are when you take it, how well your body metabolizes it, how accurate the dosing is, etc.

It is NOT a good idea to keep playing with the dose amount. My advice would be to start at that 15 mg. four times a day (no sooner than 4 hours apart) for a week. Then try 15 mg. 2x in the morning and 30 mg. later in the day for the other 2 doses. Again, I am NOT a doctor, so you need to attempt to speak to one about this.

I'm really sorry you don't have definitive answers. A Mestinon trial may or may not give you them. The one thing you definitely don't want is to take a drug that makes you worse! I hope you'll know soon if it works or not.

Annie

Tatia - Annie pretty much described what my neuro told me to do when I first started Mestinon.

1/4 Tablet (15mg) every four hours - - regardless of whether you are strong or weak for at least five days.
If weak, make a note of how long it was since your last pill - but don't change the plan

After 5 days, it everything was pretty good, then stay on this dose.
But, if you noted that you experienced weakness in between doses; then take 1/2 tablet (30mg) every four hours. Again note if /when weakness is experienced in between doses. And, as before, do this for 5 days.

At this point, I was told to call in and report how things were going. My neuro has always emphasized consistency...settle on a dose and stick with it every 4 hours. Until you have established a baseline (so to speak), it is really counterproductive to experiment.

Good luck....and if things are really crazy and not right...call neuros office. You might not get to talk to neuro, but (in my case) the PA or nurse always gets back to me within a 24 hours on any questions I have.

My neuro had me start with 30 mg once a day (usually in late afternoon) for 3 days.
If I was able to tolerate that, go to 60 mg once a day for 3 days.
Then 90 mg. for 3 days, and 120 mg. for 3 days.

If, at any time during that trial, I started feeling bad, I was to go back down to the lower dosage, and see if I was still able to tolerate it.

I think what she was trying to establish was: 1) If I had MG; and 2) What dosage I could tolerate.

I was able to tolerate 90 mg without any problem; 120 mg laid me out on the couch, wanting to puke my guts up. From there, we were able to establish how often I needed to take it (every 3-4 hours, depending on how "active" I am on any given day).

If you aren't able to tolerate it at all, you either don't have MG or you have a case that isn't treatable with Mestinon.

It's important to have some "consistency" when trying to figure out if Mestinon will work for you. If your doctor doesn't know this, it may be time to find a new one....

Thanks for the input. Abby, you're right it could have been coincidence, but my attacks are usually longer than 30 minutes. Will keep trying to see what results I can get.

Annie, I was not very clear, sorry. No, I did not overdose the first time. I was actually a little bit afraid to try the Mestinon because of what I've learned here. I planned to wait until I was supervised, and only take 15mg to start with. My husband got angry, and accused me of not wanting to get better and not being compliant with doctor's orders. Anyhow, I took 60mg, and felt the effects of it 30 minutes later. I did not take a second dose. It was so terrible and my husband could see that 60mg was making me worse, not better.

To all of you, thanks for the suggestions about dosing. I will try again with 15mg on a regular schedule, see what happens, and titrate up if appropriate.

Your husband and mine should get together!

Like you, Tatia, I am VERY adverse to taking any drug - perscription or OTC. And practically panic if I have to take two different drugs in the same day!! Perhaps it's because I have had bad reactions (like the time Pen made my tongue swell and landed me in the ER...or the time the Demerol they gave me in the hospital made me see the most astonishing paisley waves on the popcorn ceiling!!...or the time (well you get the idea)

My husband - on the other hand - thinks if a doc said to take it ....TAKE IT (lolol)

Input please
 

Hi guys! Please give input regarding my trial. I've been taking 15mg of Mestinon twice a day, beginning Sunday June 10th. For a week, I can't say I noticed any effects, good or bad.

Yesterday (my 8th day into this trial) I took the morning dose, and half hour later became quite ill. I felt extremely woozy, dizzy/lightheaded, tired, a little weak, a little nauseated, and explosive diarrhea. It lasted a couple hours and then I felt much better. It was not unlike the effects I experienced when I took 60mg cold turkey.

Does Mestinon build up in one's system? I skipped the second dose yesterday. I took 15mg this morning with no effects at all. What might I conclude from yesterday's incident? How should I proceed with my trial? At what point do I decide if this is working or not?

I can't ask my doctor. The prescribing neurologist said he will prescribe therapeutic trials for me, but he's done treating me and doesn't want to see me anymore. My primary doctor is on maternity leave, so I can't ask her or get a referral to another neurologist started for another month or two.

Thanks for any help you can offer
Tatia

That almost sounds like food poisoning to me. I've gotten pretty woozy and some nausea if I don't take my morning dose of 30 mg mestinon with food. Makes for a fun drive to work :) I don't want to discount what happened at all, but perhaps it's something ordinary like a food reaction, perhaps it's just needing to eat with the meds. Could be you don't tolerate the mestinon too. Mestinon leaves the system pretty quickly, thus the need for being on a dose every 3-4 hours for most who take it.

Is it possible your primary's office could take care of the referral for you even though your doc is on maternity leave? This is not a trial you want to do without supervision!

Wish I could be of more help, just trying to throw a few ideas out there. Best wishes!

My Neuro was all about the intestinal distress - this is the first sign you're taking too much. It aught not to cause any nausia or woosieness. Can you talk to your pharmacist about it? If your current neuro isn't treating you... you need to find someone who'll provide you with detailed info.