Hi everyone, I'd really appreciate your constructive advice.

A close friend is currently being treated with Pyridostigmine / Mestinon. She was originally on a generic brand but is now using name-brand Mestinon with generally positive effects.

Her current regimen is to take 1/2 a tablet every 3 hours. At or around the 3 hour mark, the improvement often has a sudden dropoff. The effictiveness during the ~3-hour period with name-brand Mestinon appears better but this sudden falloff in efficacy is even more pronounced.

This is generally effective and works well. However, in a work environment one can't always excuse themselves from a slightly extended business meeting or videoconference when the effects suddenly drop off and another dose is required. Additionally, it can be uncomfortable to communicate this need since the onset is sudden and can affect speech.

I understand that MG and the treatment thereof can vary widely from person to person and be trial-and-error, but with this situation in mind, I was wondering whether anyone had any similar experience, and I also had an idea that I suspect may be effective, and would like to know whether anyone has tried something similar or knows of a good reason why this should not be done.

The idea I had is that instead of taking 1/2 a tablet every 3 hours, to divide that dose again and simultaneously take:
- 1/4 a tablet
- 1/4 a tablet inside a do-it-yourself vegetarian cellulose capsule

My understanding is that the it takes 20-30 minutes for the cellulose capsules to dissolve (vs. 2-5 minutes for a gelatin capsule), so my instinct is that this would extend some of the positive effect for another 20 minutes. So, instead of being faced with an "oh no - it completely stopped working - and it's now uncomfortable to speak to communicate this" situation, she might have 10 minutes of feeling a more gradual dropoff and be able to excuse herself to take the next dose.

Reasons that I think this might work are:
- No change in schedule and no chance of forgetting to take an additional part-tablet
- The dosage rate itself (in mg / hour) is not changing
- It should be a minimal change to what we know is a generally effective regimen
- Some of the dose is still absorbed pretty much immediately and should hopefully start being effective quickly
- Sustained release versions of Mestinon exist, indicating that it is OK for it to be absorbed in the small intestine
- The time to dissolve the cellulose capsule (about 30 minutes according to what sources I could find) seems to be long enough to make a difference. According to simulations using a 1.75hr half-life, the concentration normally hit at ~3hrs is extended to ~3hrs15min. Other options to play with this delay period might be to use gelatin capsules and/or cellulose capsules in a Babushka doll/Nesting doll fashion.

I appreciate your advice and help!

Aaron

Aaron, Hi and welcome!

The dosing of Mestinon can be tricky and hard to get used to. What you are proposing, however, could get your friend into trouble. Too much overlapping of doses can actually cause her to have too much acetylcholine, making her weaker.

Has she had a conversation with her neurologist about this? There are two things a person can "tweak" with Mestinon: The dose amount and the dose timing. Sometimes people are allowed to take Mestinon every 2-1/2 hours. But, again, she needs to talk to her doctor about that first. The dose for her might not be high enough. For example, I'm on 90 mg. (Mestinon Syrup) every 3 hours, round the clock. There are times I might need a little less or a little more. I can go up to 100 mg. Some studies have shown that anything over 100 may flood the neuromuscular junction with too much acetylcholine. Some MG patients are on more than that.

This is a tricky issue. She doesn't want to go up too high on Mestinon or too quickly and end up in the ER with a cholinergic crisis (too much acetylcholine). Maybe talk about increasing the dose amount slightly, like from 30 to 60, and on the weekend when she can see how she'll do. No, I'm not suggesting she do that without her neuro's permission!

Mestinon is simply not enough for some people, especially if they want to keep working. It has finite possibilities for keeping you strong. While your idea sounds good on paper, in practice it may not provide the help she needs. I get only two "good" hours from Mestinon. It kicks in after about 30 minutes and wears off after 2-1/2 hours of taking it.

Only your friend and her doctor can decide what to do. I would not recommend that she try your idea. It's not that it's a bad idea but playing around with meds can be dangerous. It can also loose it's effectiveness if you change the form it comes in. For example, Mestinon cannot be put in the fridge. There's a lot to think about here and she needs to talk to her neurologist.

It's very nice that you are trying to help her. MG is an unpredictable disease and even with changes in a treatment regimen, it can still get worse. It completely sucks! Maybe she could log on and talk about it too. I hope she gets it all figured out.

Annie

Aaron, why not use the Timespan (the sustained release version)?

Abby

Aaron, unless your friend is "hiding" her condition from her co-workers, I suggest that she take a half tablet and put it under her tongue at the 2 hours and 50 minute mark. Mestinon used sublingually takes about 10 minutes to start acting (at least for me). OF COURSE she should run this by her doc, FIRST! (Or do it at the 3 hour mark if she'd rather NOT ask her doc -- her symptom recovery will be 10 minutes as opposed to 30 minutes.)

Mestinon melts fairly quickly under the tongue and does not have an unpleasant taste.

I agree with what everyone has said but would add that in addition to time and dose, STRESS can have a huge impact on MG. There are pleasant - and unpleasant - business meetings...so I know how much STRESS can build up in a difficult meetings with difficult clients!!

Very hard to hit the right dose for the tough meetings.

Aaron,

Mestinon can't do magic...sounds like your friend was in a similar situation as I was.

I was trying to work and tried taking 1/4 of a pill at shorter time periods (after talking to my neuro, he said is was ok for me to take any size dosage as long as I didn't go over the total amount he recommended per day).

It worked for a while, but MG is a strange thing to deal with. I ended up crashing big time and was unable to work and barely able to even care for myself for about three months last year. I crashed not because of the change in dosage but because i was pushing myself too hard.

Personally, I don't recommend using Mestinon to push oneself when you have MG. I learned that the more Mestinon I take, the harder I am going to crash later on. I haven't been able to return to work since pushing myself too hard last year. I overdid it because the Mestinon made me feel strong...

Going by my own experiences, I'd recommend your friend listen to her body and taking a break when she gets weak. Please don't try to help her push herself even more. MG has a way of punishing us for overworking. What she is experiencing, the sudden dropoff, if that were me, and it was me, would be a sign that I must take a break, not take more Mestinon. I no longer try to push myself or take extra Mestinon to do more (even though my neuro says that is okay, lol) because I was going downhill until I stopped working. Now I may be poor financially, but at least I am not experiencing those sudden crashes.

Of course, all that said, we are all different, and your friend may find help by adjusting her dosage timing (after talking to her doctor).

I replied because I was in a similar position, with people around me expecting the Mestinon to be a miracle cure so I could live a normal life, and work normally, and they were recommending similar things to me as you are suggesting to your friend. I felt pressured...and honestly, I wish I had more people around me that were supportive and could work around my weakness without pressuring me to push myself.

I wish your friend the best. She may find support by joining this forum. I think you should recommend it.

~DesertFlower

Hi Aaron,
How about taking ONE 60 mg pill and see when the drop-off occurs?
Maurice.

I had forgotten.........may I blame it on my dementia??

I did the same thing -- giving myself more and more Mestinon so that I could continue to perform my duties as a teacher (with my physician's approval) -- and I WAS able to continue -- to a point -- when I finally collapsed into an awful exacerbation -- and had to yell "uncle" and apply for disability.

Thanks for reminding me. MG "ain't" nothing to play around with!!!

I'd just like to say a huge "thank you" to everyone for sharing their experience. I really, really appreciate your helpful comments and kind words. I'm sure that my friend would benefit from your input and from a supportive, kind group of people such as you have demonstrated yourselves to be. Thank you so much!



Annie: Thank you so much for your constructive input, your response was very informative and helpful. My friend will be discussing things with her doctor, and seeing what he thinks. As I understand, 60mg was too much, but it's something that they can perhaps adjust. I don't believe she has been given the syrup as an option so I'll let her know that is an alternative, too (it might make it easier to make slight adjustments to the dose) and she can discuss that at her upcoming appointment.

Abby: Thank you for the suggestion. From what research I have performed, it sounded like the sustained release version is OK for using while sleeping or on an uneventful day, but i've seen quite a few accounts that say it's not accurately dosed enough (or easily manipulated enough) to support people working through the day.

Jana: Thank you for the suggestion about dissolving the tablet under her tongue for faster rate of action, I will definitely pass it on. I don't believe that the rate of efficacy is the constraining factor however, but rather that the occasional sudden dropoff of efficacy of the previous dose. Also, thank you for sharing your experience about pushing things too much.

suev: Thank you, I can see how stress can be a big factor, and indeed, thinking about whether symptoms will exhibit themselves within a meeting can be stressful. Adjusting the dose slightly based on the stress involved with the activity is something that my friend can discuss with her doctor, so thank you for the input!

DesertFlower: Thank you for sharing your experience with shortening the time between doses - that is very valuable knowledge. I know my friend has adjusted her expectations and been careful about managing what energy and strength is available and resting when needed, but your experience really does reinforce how important this can be. Thank you very much.

Maurice: Thank you, I am sure my friend will be discussing this and dosing in general with her doctor.

My most awesome friend, Aaron, shared your responses with me. I've been diagnosed with a mild case of MG and as Aaron mentioned, I'm trying to get Mestinon, life, work on track. The common thread amongst all of your extremely helpful posts is the importance of rest. You hear it so much: rest when you have a cold; catch up on rest over the weekend; rest when you feel overworked or stressed. It becomes just another word but I think for Myasthenics, it's THE MOST IMPORTANT WORD. Does anyone also suffer from headaches? My doctor feels that my frequent headaches are a result of my blurry vision and too much computer work. Just wondering if anyone out there has a similar symptom? Also, I have weakness in one arm and hand. Is this common?