Mestinon – why start with one dose daily and not 4 small dosages?

[Betty42]

Hello

Do anyone know why some doctors recommend starting with one daily dose? My doctor wants me to divide the dosage in 4 daily dosages because of the half-life. He has little experience with Mestinon and I see that most other on this forum start with one dosage and increase to two dosages after a week (+/-). I also see that many uses 4 daily dosages after a while.

I hope anyone can explain the rationale behind the starting dosage when starting with Mestinon.

 

[nsdn]

3-4 daily dosages... when you wake up and then every 3-4 hours.

 

[Rebeccare]

When I was on Mestinon I started off by taking it three times a day. The only reason I can imagine why you would only take a single dose in a day is so that your body can slowly get used to the medicine, which might result in fewer side effects? But generally Mestinon is well-tolerated, and I think many people go straight to taking multiple doses a day without any problems. If you only take a single dose, then the medicine would be out of your system by lunchtime.

 

[Mel9]

I think doctors are just trying to ensure the side effects (eg gut pain, nausea, blurry eyes) of Mestinon don’t become too overwhelming early on, so that we can persevere until these side effects disappear.

Btw: I am still learning of interactions between Mestinon and other meds and as a consequence, reduced the number of meds and supplements considerably.

I feel so lucky to respond well to this drug: haven’t felt so good since 2011. By taking it every four hours I now can be quite active every second day (as long as every second day is an almost ‘total rest’ day).

interactions I have discovered to be important for myself:

To stop extreme horrible nausea I had to stop taking Trental. Actually, I was so nauseous I ended up stopping nearly all my supplements (couldn’t keep them down).

At that nauseous stage, The only supplement I could handle was sub-lingual vitB12. When the nausea stopped I realised I didn’t need so many supplements and so put them in my ‘no longer use’ cupboard.

This week, I experienced some gut pain so googled ‘drugs that interfere with Mestinon’. It turned out that I was taking two interfering drugs: Plaquenil and amlodipine, so stopped these. The gut pain went away.

Please note that I am not a medical doctor. I just started following the advice of my own (excellent) doctor (LLD) regarding starting Mestinon slowly and increasing very gradually.
I then modified my supplements/drugs regime by listening to my own body.

 

[JES]

I hope anyone can explain the rationale behind the starting dosage when starting with Mestinon.

The half-life of mestinon is 3-4 hours, so your current doctor is more aware than most doctors.

 

[Betty42]

I think doctors are just trying to ensure the side effects (eg gut pain, nausea, blurry eyes) of Mestinon don’t become too overwhelming early on, so that we can persevere until these side effects disappear.

Btw: I am still learning of interactions between Mestinon and other meds and as a consequence, reduced the number of meds and supplements considerably.

I feel so lucky to respond well to this drug: haven’t felt so good since 2011. By taking it every four hours I now can be quite active every second day (as long as every second day is an almost ‘total rest’ day).

interactions I have discovered to be important for myself:

To stop extreme horrible nausea I had to stop taking Trental. Actually, I was so nauseous I ended up stopping nearly all my supplements (couldn’t keep them down).

At that nauseous stage, The only supplement I could handle was sub-lingual vitB12. When the nausea stopped I realised I didn’t need so many supplements and so put them in my ‘no longer use’ cupboard.

This week, I experienced some gut pain so googled ‘drugs that interfere with Mestinon’. It turned out that I was taking two interfering drugs: Plaquenil and amlodipine, so stopped these. The gut pain went away.

Please note that I am not a medical doctor. I just started following the advice of my own (excellent) doctor (LLD) regarding starting Mestinon slowly and increasing very gradually.
I then modified my supplements/drugs regime by listening to my own body.

I’m so happy for you Mel9

I guess you are right. The body needs time to adjust to the medication.

 

[Mel9]

I’m so happy for you Mel9

I guess you are right. The body needs time to adjust to the medication.

How are you going with the Mestinon @Betty42?

I am now taking 30mg Mestinon every THREE hours, after realising how much I was slowing down in the 4th hour.

I can now walk for almost an hour every second day and no PEM!

Still very careful not to overdo things though.

 

[Betty42]

How are you going with the Mestinon @Betty42?

I am now taking 30mg Mestinon every THREE hours, after realising how much I was slowing down in the 4th hour.

I can now walk for almost an hour every second day and no PEM!

Still very careful not to overdo things though.

Hi

I am increasing the dosage very slowly due to my bad condition. I have decided to increase the dosage with 5 mg every week until I feel my body is more “in balance” (I have been very sick since October. I have some sort of “sympathetic storm” – it’s horrible).

I’m tolerating Mestinon quite well, but I’m only on 25 mg at the moment.

It’s inspiring to hear that you are doing so well! Wish you the best!

 

[Mel9]

Hi

I am increasing the dosage very slowly due to my bad condition. I have decided to increase the dosage with 5 mg every week until I feel my body is more “in balance” (I have been very sick since October. I have some sort of “sympathetic storm” – it’s horrible).

I’m tolerating Mestinon quite well, but I’m only on 25 mg at the moment.

It’s inspiring to hear that you are doing so well! Wish you the best!

I am very happy overall with 30mg every three hours

But, unfortunately, I keep making the mistake of doing too much because I ‘feel so well’ and then forgetting to take my next pill on time.

Resulting in quite nasty ‘PEM’ that is a bit different from proper PEM: the delay might only be four or five hours.

 

[Mel9]

How are you @Betty42?

My latest ‘tweaking’ of Mestinon regime.

I learnt that sticking to strict 30mg every three hours works well except when I have done too much.

Eg if I have visitors, or do some gardening. If I take my next half tablet early (eg an hour early) and lie down I can now usually stave off an exhausted reaction leading to PEM.

It’s hard to adjust to a more ‘normal’ life but I am learning (mistake by mistake, PEM by PEM)

 

[wigglethemouse]

It’s hard to adjust to a more ‘normal’ life but I am learning (mistake by mistake, PEM by PEM)

I noticed you said on HTesters thread that your HR is going up. Perhaps that and what you say above is an indication that you are doing too much and need to back off. I'm guessing it will take time for the CNS to re-balance for the long term and you don't want to rush it and end up back even worse.

You may also want to discuss with your doctor if you need to increase your dose perhaps. I have heard of people taking 60mg 3x daily. Something to research and think about.......

 

[Mel9]

I noticed you said on HTesters thread that your HR is going up. Perhaps that and what you say above is an indication that you are doing too much and need to back off. I'm guessing it will take time for the CNS to re-balance for the long term and you don't want to rush it and end up back even worse.

You may also want to discuss with your doctor if you need to increase your dose perhaps. I have heard of people taking 60mg 3x daily. Something to research and think about.......

Thanks
Very good advice!

 

[Betty42]

How are you @Betty42?

My latest ‘tweaking’ of Mestinon regime.

I learnt that sticking to strict 30mg every three hours works well except when I have done too much.

Eg if I have visitors, or do some gardening. If I take my next half tablet early (eg an hour early) and lie down I can now usually stave off an exhausted reaction leading to PEM.

It’s hard to adjust to a more ‘normal’ life but I am learning (mistake by mistake, PEM by PEM)

Hello Mel9


My situation is still the same and I'm still battling with the "sympathetic storm”. I'm only on 4 x 5 mg mestinon due to the current situation. I will increase my dosage when i feel my body is ready. Hope it will be soon.


It’s uplifting to hear that you are still doing fine on Mestinon

 

[Mel9]

Hello Mel9


My situation is still the same and I'm still battling with the "sympathetic storm”. I'm only on 4 x 5 mg mestinon due to the current situation. I will increase my dosage when i feel my body is ready. Hope it will be soon.


It’s uplifting to hear that you are still doing fine on Mestinon

Hope you are feeling a bit better now? What is a Sympathetic storm?
One thing to watch out for: if the Mestinon does eventually work, watch out that you don’t get over enthusiastic and do too much. This has been my latest problem and paying for it with PEM.

 

[Betty42]

Hope you are feeling a bit better now? What is a Sympathetic storm?
One thing to watch out for: if the Mestinon does eventually work, watch out that you don’t get over enthusiastic and do too much. This has been my latest problem and paying for it with PEM.

It's when the sympatetic part of the ANC is more (very!!!) active than the parasympatic. It feels like my body is "high" and always on alert!

I'm still bedridden. When I have this sort of reaction it takes +/- 200 days before the Sympathetic storm is "turned off". And after the "switch" turns of the Sympathetic storm I need 3-4 weeks of rest to get back to my "normal" activity level.

 

[nsdn]

Hi guys.

Months ago I could leave home and the ideal was 4 daily shots of Mestinon. Now that I'm practically bedridden and I do not need Mestinon if I do not get up, I wonder if it's convenient to take it or not take it.

Thank you very much for your attention.

 

[wigglethemouse]

This Dysautonomia International Conference presentation at 3min 45secs shows some ACh connections. The presenter describers later that drugs like Mestinon boost ACh levels which may help some forms of Dysautonomia if your ACh levels are lower. If you happen to have too much ACh then Mestinon would make you worse.

 

[nsdn]

Thank you. What exactly is ACh and how can I measure it?

 

[wigglethemouse]

ACh is Acetylcholine which you can read about here.
https://en.wikipedia.org/wiki/Acetylcholine

It is a neurotransmitter—a chemical message released by nerve cells to send signals to other cells [neurons, muscle cells, and gland cells]
......
Acetylcholine is also a neurotransmitter in the autonomic nervous system, both as an internal transmitter for the sympathetic nervous system and as the final product released by the parasympathetic nervous system

You can read about Mestinon here
https://en.wikipedia.org/wiki/Pyridostigmine

Pyridostigmine is used to treat muscle weakness in people with myasthenia gravis or forms of congenital myasthenic syndrome

It is also being prescribed 'off-label' for the postural tachycardia syndrome

However for some forms of congenital myasthenic syndrome it can cause harm.

I don't know if it's possible to measure levels in a clinical setting.

 

[Gingergrrl]

The presenter describers later that drugs like Mestinon boost ACh levels which may help some forms of Dysautonomia if your ACh levels are lower. If you happen to have too much ACh then Mestinon would make you worse.

I think this is really a key point and is probably why some people do really well with Mestinon and others do so poorly. On paper, I seemed like a great candidate for Mestinon (not only b/c I had severe POTS but b/c I also had the LEMS autoantibody with profound muscle and breathing weakness). And yet an 1/8th of a Mestinon gave me respiratory depression (in 2014) and I almost went to the ER.

No one (not me or my doctor) knew that I had the LEMS autoantibody at that time, and it's possible that I did not even have it yet. We will never know since I was first tested for it in 2016 and then again in 2018. But regardless, people with LEMS do amazingly well with Mestinon and yet it was horrible for me!

I don't know if it's possible to measure levels in a clinical setting.

To the best of my knowledge, they is no way to measure ACh levels in a clinical setting (although I assume that there must be in a research setting). If there was a way to have this test, I would LOVE to do it.