[Kasper1014]

I was diagnosed with MG last Dec.

Now I am taking 60mg mestinon twice a day and 90 mgs of mestinon twice a day....they alternate every 4 hours. Plus Prednisone 20 mgs every day.

For the most part...I have been feeling ok. I can tell when the mestinon wears off.

Yesterday, I noticed that my neck hurts! it is like my head is super heavy. Plus the muscles around my rib cage also hurt and feels weak. When I cough or take a deep breath....it hurts. When I move my arms in certain positions...it hurts. And when I take a drink, I have to be careful in order for it "not to go down the wrong pipe".

So...this started me thinking...how do you know if you are about to or in crisis? are there any precursor symptoms?

I really hope I am just being paranoid...

[AnnieB3]

First, let me say that "When in doubt, go to the ER."

The thing is YOU can't know. Only the doctors can say for certain. Although now that I've had one, I do know what it's all about and what the warning signs are.

The fact is that you have gotten much worse in a short amount of time. That alone should send you to the ER. You do not want to mess with this. MG can get rapidly worse and there is no way to predict that.

And, if I were you, I'd have a discussion with your neuro at some point about why the huge fluctuations in dose amounts. A steady dose is often better. I only have permission from my neuro to go up 10 mg. when I go out and run errands. The MG experts I've spoken to say increasing the dose amount slowly and keeping it basically the same is best. Then increasing the time between doses would be next, like every three instead of every four hours.

DO NOT make changes without talking to your doctor!!!

What do you mean by "hurts?" Are your muscles cramping? Spasming? If they are, that means they are probably weaker. Right before my crisis, my entire "trunk" went into spasm.

You can't know if it's too much Mestinon or not enough or something else like thyroid, electrolytes being off or what. You have to go in. Please do so!!!

I hope you will be okay.

Annie

[Kasper1014]

Originally Posted by AnnieB3

First, let me say that "When in doubt, go to the ER."

The thing is YOU can't know. Only the doctors can say for certain. Although now that I've had one, I do know what it's all about and what the warning signs are.

The fact is that you have gotten much worse in a short amount of time. That alone should send you to the ER. You do not want to mess with this. MG can get rapidly worse and there is no way to predict that.

And, if I were you, I'd have a discussion with your neuro at some point about why the huge fluctuations in dose amounts. A steady dose is often better. I only have permission from my neuro to go up 10 mg. when I go out and run errands. The MG experts I've spoken to say increasing the dose amount slowly and keeping it basically the same is best. Then increasing the time between doses would be next, like every three instead of every four hours.

DO NOT make changes without talking to your doctor!!!

What do you mean by "hurts?" Are your muscles cramping? Spasming? If they are, that means they are probably weaker. Right before my crisis, my entire "trunk" went into spasm.

You can't know if it's too much Mestinon or not enough or something else like thyroid, electrolytes being off or what. You have to go in. Please do so!!!

I hope you will be okay.

Annie

My neuro wanted me to take 60mg in the morning, 90 mgs 4 hours later, 60mg 4 hours later and to end with 90 mgs.

He wanted me to see how and when I felt the best. I have been on this dosage schedule for the past month....I see my both my neuro and Opthamologist once a month.

It is like a cramping feeling. You know that charlie horse feeling you get in your legs or feet when your legs cramp up? That is the feeling in my rib cage...

And when I go to the ER, what do I say? Yes...I know this sound totally stupid...but I do go up to triage and explain that I have MG and think I may be in crisis?

[AnnieB3]

What you say is that you have MG, your muscles are weaker and you're concerned about being near a crisis. That's it. Let them take it from there. They often do a clinical exam first. They will check your oxygen saturation, which does not crash until late in the game. They can do an arterial blood gas and/or breathing tests. The O2 they should check while you move around, not while you are sitting on a gurney. They'll monitor your BP too.

I'm not a doctor but I completely disagree with your doc about the dose schedule. You're putting your body through a roller coaster ride. It's possible that the 90 mg. dose is overdosing you. So whether it's to much or too little Mestinon, only the docs can figure it out for sure.

Just go in, okay? You have to. When muscles cramp like that they are weaker. Don't mess with it. When my muscles do that, it's a huge warning sign to me to back off of activity and rest.

You do not want to rest and see how it goes. Really, you have to go in!!!!


Annie

Can you imagine a doctor giving you alternate doses of any other meds? Seriously, kind of ticks me off the more I think about it. Yeah, maybe some docs do it but then how can you know for sure which dose makes you worse or better? Why not suggest a slight increase of 15 mg. across the board? With Mestinon syrup, what I take, you can slowly increase or decrease doses by smaller increments.

[Kasper1014]

Thanks Annie! I do feel kinda scared and feel there is something that is not right...DH agrees with the ER also.

[AnnieB3]

Don't feel scared! Just let them help you. Trust your instincts and GO! Let us know how you're doing.

Okay, I still see you on here!!! Go in now . . .

[tysondouglass]

Originally Posted by AnnieB3

Don't feel scared! Just let them help you. Trust your instincts and GO! Let us know how you're doing.

Okay, I still see you on here!!! Go in now . . .

Haha, annie your always the best at letting people know when to go in.

Kasper- Im sorry your going through this, yet its something that sadly for some of us comes with MG. Im glad your breathing doesnt seem to be affected as of yet, but be careful, it very well could have.

I never knew when to go in either, yet since september Ive had 3 crisis'. 2 of which i almost had to be intubated, and 1 i had to be wearing a bipap for 4 days.

So dont mess around with it, even if you arent having a crisis, you could be having an excausterbation which can be nasty.

Please just be careful, and let us know how your doing.

[DesertFlower]

I have to agree with Annie, the ups and down on the dosage are tough and I wouldn't recommend it (although I am not a doctor and it is possible there is a good reason for it sometimes).

My doctor did this to me too, first with having me take 60 mg every day with an additional 60 mg every second day. One day I was in bed tired most of the day from not enough Mestinon and the next I was energetic and shaky/nervous from too much mestinon.

For a while I didn't really care about this bad day/good day situation, because I was happy that I could eat, brush my teeth and shower, I really didn't mind that I had to go back to bed afterward. And I didn't mind the nervousness on the high Mestinon dosage day, although it was difficult being around people, lol.

After I complained, my doctor and I compromised and I took 60 mg in the morning and 30 mg in the evening, this was better but still I was shaky/nervous for the first half of the day (but funcional) and then the second half of the day I went to bed. My neuro still doesn't like me splitting the pills, but at least he approved it.

I complained again to my neuro and I am now taking 30 mg 3 times a day and occasionally a 4th time if needed.

This is helping me a lot, I am happy to have somewhat predictable days and the steady dose is much easier to deal with.

I just realized that I have a new eating habit now. After losing weight from not being able to eat enough before I started Mestinon and from those high dose/low dose of Mestinon on alternate days, I eat fast now and I have a hard time stopping myself from swallowing my food after barely chewing. Since I couldn't eat much on the low dose days I ate a lot on the high dose days and I gave myself this new bad habit.

I think you should talk to your doctor about a steady dosage.

[Stellatum]

Annie,

I'm totally guessing, trying to figure this out myself--but could the reason for the up-and-down doses have to do with the half-life of the drug? Tell me if I have this right: if you take 60 mg. at 8:00, then at 12:00, you still have 30 mg. in your system. So if you take another 60 mg. pill at 12:00, you now have 90 mg. in your system.

This is where I get lost. I tried to make a line graph so I could figure out how to keep the amount in my blood fairly even. But I don't know if the efficacy declines steadily, or, um, exponentially? Asymptotically? I don't think I ever got that far in calculus...help?

[AnnieB3]

Nope, that's not the way it goes Abby!

This is how the MG expert's I've known explain it. Mestinon kicks in anywhere from 20 minutes to 1 hour after you take it. It's more like 30 minutes with the Mestinon Syrup. How fast it goes to work depends upon your GI tract, peristalsis, metabolism, etc. Then the "full strength" of it lasts about 2 hours and then it wears off to varying degrees. For me, it kicks in within 30 minutes, I have about 2 hours of good use and then it rapidly wears off.

I can only guess as to why Kasper's doc was doing this. I cannot imagine a good enough reason to take someone's MG on a ride.

Hope you are doing okay, Kasper!!!

Annie