Another Mestinon Question
 

I have another question regarding Mestinon. DesertFlower had suggested keeping a journal of times and side effects of Mestinon. I started doing this on Nov. 6 in hopes of finding a dose that works for me. I think I posted before that I take 40 MG of Pred. every other day too. My question is this....is it possible that I can get good results for the muscle weakness with the Pred but still not get much relief on off days with Mestinon only? I have played around wit the dose like my Neuro suggested. I have figured out that I need less Mestinon on days I take the Pred but on my off days it seems like I am having more weakness in my legs and my jaws. I am wondering if it is possible that both is just too much for me. Have any of you all ever experienced this? I am also wondering are any of you only taking immuno supressants and no Mestinon? I am really starting to think that Mestinon is the problem. I've never heard of anyone getting worse on mestinon instead of better...is that even possible? Sorry for the rambling I am just so stumped over the Mestinon!!!!:eek:

That's a known side-effect of Mestinon. If you take too much it can mimic the effects of MG. What dose are you taking?

another mestinon question
 

I had been taking 60mg every 6 hours but when I saw my neuro he told me he thought I needed to up it because I still have ptosis off and on and problems with my jaw being weak to the point where once in a while I feel like I am going to have to push it up to close my mouth. When he had me look up for 30 seconds my eyelid literally fell. He suggested going up to 90mg every 6 hours and work up to 120mg every 6 hours if I still had symptoms. I took the 90mg for a week and did better, then upped it to 120mg every 6 hours and that is definitely too much. There were days where by the time I took my 3rd dose my legs felt like Jell-O. As soon as the Mestinon wore off that went away. The last few days I am taking 90 mg 3 x a day. Today has been one of those days where I was fine until I took my afternoon dose and I was so weak in my legs and jaws I couldn't wait for it to wear off!!! It has now passed since I haven't had Mestinn since 12:30.

Is your neuro an MG expert? Sometimes this Mestinon dosing takes an expert who has LOTS of experience.

Upping the actual dose amount is not often what helps. A consistency of dosing throughout the day may be better. Like taking it every three hours. And at a lower dose, like the 60 mg. You can break those tablets - does your neuro know that? What about going up to 75 mg. A jump from 60 to 90 or even up to 120 can make you much weaker!!!

I actually feel better when I take a consistent dose all day/night. I'm on 90 mg. every 3 hours. But that's me. You may only need 60 mg. Or 75. Or you may need more when you go out and do things.

I'm not a doctor but this is how my neuro explained it all to me. He IS an MG Expert and MDA Director.

Many studies have shown that above 100 mg. the neuromuscular junction is too flooded with acetylcholine, leaving you open for having a cholinergic crisis more easily. Of course, everyone's ability to handle higher doses is different but it seems like your body can't. This stuff is nothing to "experiment" with. Going into a cholinergic crisis, where you can't breathe or move from too much Mestinon, is as bad as a Myasthenic Crisis (not enough acetylcholine).

The Pred issue is complicated. Usually doctors like to go every other day to attempt to keep your adrenal glands "turned on." They tend to go dormant when you have it every day. Why should they work when something else is doing it's job for them?!

Some people, however, have a really rough time with that schedule. And it may not be the MG on the off Pred day making you feel weaker. What if your adrenals have stopped working and now "need" that dose every day to keep you from having weakness from adrenal insufficiency? Again, not something to mess with. There are other symptoms of that, which you should become aware of. Like sweating, feeling "out of it," having your BP plummet, etc. An endocrinologist is really the doctor to evaluate that for you, NOT a neurologist!!!

The only way you can tell if your increased weakness is from Mestinon is to see how you feel off of it, like you did. Well, that's not completely true. They can figure it out in the ER when you go into a cholinergic crisis! :eek:

I hope you and your doctor can find a balance for what works for you. You do not want a trip to the ER. Not fun.

Annie

My neuro is up with all things MG, I'm just one of his patients. He said that it can take about 20min to work, and lasts about 4 hours. I take my first one between 7 - 8am, then around 12midday. I know if I've forgotten, because my eyelids droop. I only ever take a afternoon one if I'm going out and need the extra boost.
Kate

Kendra,

My neuro said exactly the same thing as Kate's!

I am allowed to take a dose early (like 30 min. early) if I'm active and 'running out' - - but they're really encouraging me to try to stick to a four hour schedule. I am allowed to take 1/2 doses if I'm doing really well. But they seem to prefer that I keep the intervals contant while allowing me some discretion with the dosages.

Sue

HI Patrick here how far up and down have you tried you can take up to 20 tablets of 60mg per day .
For a variety of problems I have had to settle at the moment at 16 by 60gms per day. massive amount but neuro tested strengh yesterday at near maximum and approved it as my pred has not yet kicked in .

WITHOUT PRED TO REDUCE IMMUNE SYSTEM AMOUNT OF MESTINON IS DIRECTLY LINKED TO ACTIVITY LEVEL.
If I shower and dress and do some light house chores then 120 at 7:00am may needed to be suppemented at 7:50am with 120mg more as mestinon sodium ions have been used up by the activity hence so side effects .determined only by weakness feeling in my neck which drops to my chest or I CANNOT LIFT MY ARMS ABOVE MY HEAD.
Don't take it and you put all the surrrounding muscles under pressure in chest ,shoulders back which try to step in and take over from the neck muscles.
Soem of our experts will be able to tell you from the medicine bible what the safe upper limits are per day in mg or gms .
Moving slowly up until overdose signs start as muscle twitch and eye twitch in my case.
I am taking 60mg pred per day which has not kicked in to reduce the antibody occupation of my muscle receptors,according to neuro doctor.
takes four to six weeks from start.
Significant to know mestinon without pred or something to reduce immune system according to neuro doctor will cause long term damage to the receptors as battle rages to occupy the receptors between yoyr immune antibodies and the synthetic sodium ion replacement in mestinon

Hi doglover,
I totally agree with Annie, 120 mg Mestinon every 6 hours is quite unusual...I'm now in a relapse period and I take 60 mg every 2, 3 or 3.5 hrs according to the time, morning-mid day or afternoon, thus shaping it to my activities. That makes per day a total of 6 x 60 mg and a full 180 mg Timespan at night plus 30 mg Pred every day.
Maurice.

another mestinon question
 

Hi Annie,
Yes my Neuro is an MG expert. he is actually on the board of our the Mo & KS MGA. Hmmm it sounds like everyone is in agreement that it is better to spread it out in smaller doses throughout the day. I will try that today and see if that helps.
No I definitely don't want to make a trip to the ER!!! I think I need to down the dosage and spread it out more regularly and see how that works.
Thanks,
Kendra

another mestinon question
 

Kate,
Are you on Pred too or just Mestinon? I have the same problem with my eyelid drooping!!!
Thanks,
kendra

another mestinon question
 

Sue thanks for this.
Kendra

another mestinon question
 

PMCPMC,
I have definitely noticed the eye and muscle twitching and thought that it might be related to taking too much. After all the response I am convinced I am taking too much and need a smaller dose on a regular schedule.
I was not aware of the damage that could be caused by Mestinon only!!! That is very scary!!! I have no doubt I get much better relief of symptoms from my Pred than the Mest.

Maurice,
I am so sorry to hearthat you have relapsed. This disease is a royal pain in the rear huh? Thanks for your input and hoping you will see improvement soon.:hug:
Kendra

If it twitches a little exercise whatever yours is uses it up anf=d the twitches stop as tere is no more available for use to cause twitch

Kendra, Please do not change anything until you speak to your neuro first! I'm glad he's an MG expert, though that doesn't mean he knows what it is like to have this disease! ;)

I don't want you to have either kind of crisis, myasthenic or cholinergic!!!

Patrick, May I ask where you are getting your info about Mestinon, specifically what you are saying about "synthetic sodium ion replacement?"

Mestinon was shown to do damage to people with normal amounts of acetylcholine (as in the Gulf War when they took it to ward off Sarin gas).

MG can indeed cause damage to the neuromuscular junction. Newer studies show that Mestinon may indeed be a immune modulating drug, suppressing antibodies. Time will tell.

Annie

Annie,

My doctor agrees with your statement. He told me that Mestinon prevents damage to the neuromuscular junction due to MG. That without Mestinon, MG symptoms usually, but not always, progress due to this damage. He stressed to me that it was important to find the right Mestinon dose that minimizes weakness. This was when I was first diagnosed with MG and I had forgotten about it. Thanks for the reminder, I am going to look up more info about this.

Does anyone have other info about this? I would like to learn more about what Mestinon does.

So mestinon can cause damage to the NJ or prevents it? My neuro. said something similar to what yours did, Desert. He said that without treatment, MG usually progresses, and it gets more and more difficult to get to the starting point the longer you wait to get treatment.

Wow, Annie, I didn't know that. You're such a wealth of information! Any studies out on that yet you could point me to?

Maybe that explains why I decline for several days after I stop Mestinon. I hope I never have to do that again. I :circlelove: love, love, love mestinon!!!

Thanks!

And to Kendra: I'll get twitches all over if I go above 60, but I definitely feel the need to take 60 every 4 hours or else it's the old crash and droop. :(

Ally

Let me clarify all that! There are two issues I brought up.

1. When people with normal amounts of acetylcholine, in other words those without MG, took Mestinon, they did have some destruction at the NMJ. But the Gulf War situation is far more complex than that. They had exposure to pesticides which made the situation worse (because they do the same thing Mestinon does but in a more severe way and they destroy the NMJ).

http://www.gulflink.osd.mil/library/randrep/pb_paper/

2. There simply are not enough studies on how Mestinon affects the humoral immune system (which produces antibodies). Here are the only ones I know of, only one specifically addresses the suppression of the immune system by Mestinon.


http://www.ncbi.nlm.nih.gov/pubmed/1...m&ordinalpos=3

http://www.ncbi.nlm.nih.gov/pubmed/7...m&ordinalpos=4

http://www.ncbi.nlm.nih.gov/pubmed/1...m&ordinalpos=2


The government has done extensive studies on Mestinon, probably more than mainstream medical professionals, due to how they use it and why. It was not Mestinon alone but a combination of factors that they believe caused Gulf War Syndrome, so don't read more into it than there is! It's a complicated issue, again, involving pesticides, Sarin gas, etc.

I hope this answers your questions. Mestinon works, that's the good part.

Annie

another mestinon question
 

Wow so much interesting information.

Annie I was told by my Neuro to take my meds exactly how prescribed except for the Mestinon. He said playing with the dosage wouldn't do any damage except and I would get a better idea of where I need to be dosagewise.

I took 40 mg of Pred at 8:00 am, 60 mg of Mestinon at 11:00am and 60 at 5:00pm and haven't had any of the usual extreme weakness today. I am so happy!!! Tomorrow may be a different story since I won't have the Pred. I'm hopeful though. Thanks again to all of you for your input. You are THE best!!!!:grouphug:
Kendra

Well, "playing with the dosage" is okay as long as you don't take huge jumps in it!!!! Geez. Sometimes these neuros, even the experts, act like Mestinon is a placebo. I'm glad you will be sensible, Kendra. An MG crisis is a whole new ball game and you don't want to end up with one. It can take longer to bounce back from that and it involves so many more invasive treatment options.

synthetic sodium ion replacement in mestinon THIS WAS TO SIMPLIFY THE EXPLANATION NOT FACTUAL AS YOU KNOW ANNE AS THE REAL SITUATION IS MORE COMPLJCATED BUT IT WAS TO HIGHLIGHT THE NEED FOR A TWO PRONG ATTACK ACCORDING TO MY NEURO DOCTOR.
AS IT AN AUTO IMMUNE CONDITION THAT MUST BE ACCORDING TO HIM THE FIRST LINE OF ATTACK ON THE CONDITION TO REDUCE THE AUTO IMMUNE RESPONSE AND USE MESTINON ETC ONLY IF NECCESSARY.I WILL LEARN TO BE MORE CAREFUL WITH MY WORDS IN FUTURE MAKING SURE I REFER TO THE APPORPEIATE RESEARCH ARTICLE .
i HAVE READ ONE SOMEWHERE ,I WILLTRY AND FIND IT AGAIN.SORRY AGAIN FOR ANY CONFUSION