Losing Effect of Mestinon
 

I have been on Mestinon 60 mg for about a year and a half and it seems to be losing its effect. Has anyone else experienced this?

Hi,

Yes, this happened to me a few times when I was taking it everyday pretty much around the clock. My neuro did another evaluation and increased the dosage. When my MG started getting better and I had fewer symptoms, I was able to go back down to the lower dosage again. I currently take 60mg every 3-4 hours or as needed or I am able to tolorate it due to the side effects, per my neuro. Have you called your neuro? He may increase it or want to do another evaluation. Please let us know how you make out.;)

Hugs,
Pat

I saw my neurologist and explained to him how I feel that I'm losing the effect of the mestinon and he increased my fourth dose to 90mg which is before I go to bed. Any one else gone this route?

Yes, the body can begin to need more and more. If you've ever known anyone with pain issues, it's the same with pain meds.

Well, that kind of scares me. Why not try the increased dose during the day first, so you see if you have increased weakness?!!! If you try it at night, and have signs of a cholinergic crisis (increased weakness) while sleeping, it could be very dangerous. If it works okay during the day, then taking it at night should be fine. Ask your neuro about that!

And there's also the thought that when that 90 mg. wears out in the middle of the night, you will be much weaker. Your body may "wake you up" and need more.

I know that not a lot of doctors like to give Mestinon Timespan at night but what if you talked to your neuro about trying that at bedtime?

I hope you can get it all worked out.

Annie

What are you using to stop the antibodies occupying your muscle receptors
 

Patrick here,
what are you using to reduce your antibodies attaching to you muscle receptors pred or what ?
If nothing then like me where the pred is not working yet the mestinon usage becomes directly related to how you use it up ,high activity quicker to run out and you become weaker.
As I have got out this week and had more activity I first of all thought overdose weaker but I had m=no muscle flutters or eye flutters when I was weaker therefore for me no overdose .
I increased it by mistake when rushed by the gp to his office for early appointment took it before leaving the house .forgot I had taken it when I got to his surgery I took a second 60mg at two ,first at one .then I had to rush to catch neuro at three .my neck was down on my chest since saturday because the gp gave me an antidepressant that interfered .
when the neuro saw me now with 120mg in me no neck droop what a fool I felt excellent all round physical strenght during testing .
an hour later my head was on my chest
agreed to changing to 60mg every three hours .
would not put up with my head on my chest straining every other part of my upper body.went back to accident anf=d emergency new neuro says if that what it takes to keep head up change until we cansee if the pred stops the antibodies occupying the muscle receptors.
if not we may have to try adifferent sreoid to stop the anti immune system releasing so many antibodies that they occupy the receptors for too long for the mestinon to stay arounnd and your muscles weaken.
Thats me

Hi Patrick
 

Many people can not tolerate Prednisolone or the immune suppressant drugs so they can only take mestinon.

For me Im stuck with mestinon only because I can't get anyone to diagnose me, despite the fact my symptoms are pretty classical MG.

Ive been stuck in this position for a couple of years after the initial diagnosis of MG was withdrawn. At this point Id try anything to get well. My illness affects me to such an extent I have only been out of my house three times since the end of August.

Love
Rach

hi rach patrick here how big a population does your neuro guy serve as this may be why you are not getting enough of an expert if his polution is small when statistics show 1 in100000 people with mg and much bigger umbers the more severe the mg .I have diaphraprm problems.
It was not picked up because I bek=lieve with a popualtion in northern ireland of 1.5 million I don't think the neuro guy has ever seen someone ith chest muscles affected bymg ,no enough experience.

hi Patrick
 

My consultant sees all the patients in the East Devon area and North Devon and some in Plymouth. He actually sees quite a few its just hes not very good at thinking out of the box (all my tests are negative although Im positive for the ice pack test). Hence why I am going back to Oxford, as at the moment I am basically being told there is nothing wrong with me and its all in my head.

Where I live there is actually a bit of a hot spot for MG as we have over 50% of the population aged 65 and older. I know this as a friend of mine is a pharmacist and he obviously dishes out a lot of meds to people!

Thanks Patrick.
Love
Rach

Thanks Rach
Who's referring you to oxford?
I printed off the numbers for the uk mtasthenia gravis site and seems there are about 10,000 patients in the uk but the split of the classifications has not been done in any detail.
An average four Gp practice will have Obe Mg Patient . guess I am it for my practice.

Hi Patrick
 

My Gp is referring me to Oxford. Only because basically I forced him to as Im getting no treatment here.

Rach

Hi Rach,

I really hope you get some answers at oxford, will be crossing fingers and toes for you
take care
Kate

I started on mestinon 3 weeks ago and was doing great on 30mg every 3 hours. After 5 days, I had to increase to 60mg every 4 hours. Worked great until about the third day when I had to take a 90mg in mid-afternoon before I could get results to improve. But, then onlly needed 30mg for rest of the evening. I am quickly learning that the dosage may need to be constantly monitored as to daily activity levels-stress, physical etc. Once I got over the 1st two week adjustment, I can tell when my body needs "more oil/gas" to get going again. LOL Best of luck.

Wow that sounds odd to take the largest dose before bed. That would keep me up or at least sure not let me sleep long or well. But then I know some folks dont have it affect them like I do.

Annie59

To PMCPMC and rach .....yes this makes sense. The lung doc at Mayo said with breathing this involved you should be in a wheelchair meaning the rest of my body is not as advanced as it. This is one of the toughest pieces for me getting diagnosed tho I was diagnosed with probable from a MG crisis hospitalization. It was classic. But luck of the draw the hospital was out of Tensilon and I was seroneg so the diagnosis was withdrawn based on the Mayo neuro. BUT the mestinon fixed my breathing during that MG crisis and worked at 60mg every 6 hours for a year. Now I have to take less. Tolerance change. So I am in the place of only getting out to doctor appointments and missing my grandkids so so so so so badly.....:boy(sad):

My breathing causes me the most problems at night, so I definitely need to take the meds at night, if not increase them due to a return of breathing issues. Last night, I had the worse time breathing and sleeping, because I could not allow pressure on my lungs.

Oh Poetist I sure wasnt implying that before bed was medically a bad idea for the disease. I used to take a bed time dose myself. I jjust had to time it just before a got to bed. If I wait an hour or so I wont beable to fall asleep nomatter what. Some nites if breathing is bad from alot of talking I just have to live with staying awake till it wears off enough.

I have interacted with some MG folks that do have it stimulate them enough to take ativan and the like. I myself have another condition that I think makes me vulnerable to it acting somewhat like coffee to me.

My breathing has been worse since Monday when I had a way too long talk on the phone first thing in the morn. I had to increase my mestinon. But today I know I just have to rest and not talk at all to try to rrecover enough. Having to work so hard to breath is so so hard. It is scary. I have some say that the time release mestinon doesnt bother them as much at nite yet helps breathing. I have not tried it as it is based on 60mg which currently I cant take.

Annie59

No harm no fowl.

Consider this?
 

Hi - the way I understand things - mestinon is simply helping the nerves connect messages to the muscles. It does not affect the course of the disease. In other words, the "cures" of MG are the treatments where one gets a thymectomy, is put on prednisone, IV plasmapheris or IvIG. These treatments are the typical methods of trying to halt the MG attack of antibodies against the nerves/muscles. Ask your neuro about your treatment.

Tresa, There was a study specific to MG and a few others that were not which said that Mestinon may in fact suppress the humoral immune system which makes antibodies.

Mestinon is a cholinesterase inhibitor. It inhibits acetylcholinesterase, the enzyme in our bodies whose job it is to mop up acetylcholine on a regular basis. It's a checks and balances situation. What Mestinon does is keep it from eating up what acetylcholine we do have so that we can use more of it for an extended period of time.

I thought that clarification might help.

There are many MGers who take either regular Mestinon or Timespan at night. We can't afford not to.

I'm concerned about this revving up of the system you refer to, Annie(59). Could it be an allergic response to bromide and not the Mestinon itself? Mestinon is not known to have that kind of response in the body.

Annie

Hi Rach

I have only recently found this website and consequently your post of five years ago. I'll keep to the point here. I also live in Devon, England.

I was diagnosed two and a half years ago with Ocular MG. I attended the Royal Devon and Exeter Hospital and was given a bottle of Prydistogmine to take when driving. In six months or so the mg went into remission, only to return in the general form three months ago (or perhaps before). Since then I have been given a larger bottle of Prydistogmine by my GP and been left to get on with it. At last I have managed to get an appointment with the consultant who I originally saw. Unfortunately try as I may I have been unable to confirm that he is a neurologist.

Can you please tell me who was the neurologist that you referred to in your post? Or time having moved on who the present consultant is for the East Devon area.

Hoping that you were eventually listened to,

John