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Regular vs. XR Mestinon...


Sunfish
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hi all -

i haven't been keeping up with replies to posts as much as i like to. i'm hanging in there but between midterm papers in my classes, new doctor appts, & the normal day-to-day stuff (i.e. getting food, staying clean, etc....silly things like that!) it's a push. but i digress...

i'm at the tail end of titrating my mestinon dose up (after my appt with dr. grubb a few weeks back) and thus just switched from the regular 60mg pills to the 180 XR. i'm wondering if any of you have taken both forms of the pill &, if so, if you've noticed any difference(s)? any less waxing & waning of symptoms throughout the day? or anything else of note?

thanks!

:blink: melissa

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Hi Sunfish,

we only have the 10 mg's and 60 mg's in my country, so I didn't try them. I wouldn't do that anyway, because my stomach can handle 2 60 mg's at a time (after a looooongggggg time) but not any more. It seems to be true: in your country you have everything big available, even the meds! (I'm referring to your Big Mac's which I love!!!!!!, and the big stores that I loved when we visited the US years ago!). I really loved to visit the US and can't wait to come back again!!!

Corina :blink:

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Hi Melissa.. I was on the 60's for a while.. and it helped me some in the beginning.. but then stopped working.. I then went to the 180 timespan once a day.. as the 60's 3 times a day would ware off before it was time for the next dose..the 180 daily.. didnt do a whole lot for me.. so then I was put on the 180 timespan twice a day.. and it was WAY to much mestinon.. it made very sick (GI tummy) so then the dose was monkey-d with again to 120 mg 3's a day.. and I seem to handle that better then the 180 2x's aday.. go figure same amount in mg's.. but less harsh on the tummy..

I find that mestinon does help to give me alittle more energy once I get past the GI issues for the day.. I start to perk up around 9-10 in the evening and have a few hours of functional time.. to do those basic things like take a shower.. maybe even eat if I'm Lucky!!

Meds react to every body diffferently.. I hope that 180 works for you and helps you feel better!!

:lol:

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thanks for all the input...

when i started on the mestinon (30 mg TID) in the spring it did wonders for me GI-wise. the problems many have with it actually helped me in terms of motility....

after working up to 45, then 60mg TID over the past two weeks i have taken the 180mg XR for the past three days & haven't noticed much difference. except perhaps more of a "crash" when it wears off late afternoon/early evening, but a bit less "crashing" earlier in the day. which may or may not be related. and that i don't feel as short of breath, or rather find it as hard to take deep breaths, when i lay down. odd seeing as that had nothing to do with changing the med, but i'll take it.

corina we do seem to like things big over here:-) we actually don't have the 10mg pills so for smaller doses we have to split the pills or take the liquid form....

i'm surprised though b/c for MG folks often take MUCH larger doses in general so would have to take a lot of the 60mg pills at once!

thanks again. i'll let you all know if anything exciting occurs...

:lol: melissa

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When my daughter uses the XR, her twitching and flailing at night become much more pronouced. (She does this, anyway.) I think it tries to keep her muscles active, while her other meds are trying to put her to sleep. Just what I think. It works better for us if she only takes it during the day. Joan

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My dr. just called today and said that he wants to give Mestinon a try (I had given him articles about it about a month ago). He is calling in the XR's - not sure what dose yet. I'll try to let you know how it works for me.

Lisa

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My dr. called in 180 mg's XR....from reading the other posts this sounds like a big dose to start with!

Anyone else taking a similar dose?

Lisa

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Lisa, I'd check that dose out VERY carefully! That's tremendously high to start out on. It took me about 5 weeks to work up to it, and I still had slight stomach disturbance. Every doctor I've spoken to about Mestinon wanted to make sure they had worked up my dose slowly, so I'm a little concerned that you MD wants to throw you into a full dose. Unless you have an incredible stomach, I'd double check on the dosing plan!

Angela

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Angela,

Thanks for the advice. My dr. let me know when I asked him about this med that he had never prescribed it before. (to anyone)

It's frustrating to me that he wouldn't ask other dr's about how to go about it!

Thanks,

Lisa

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Lisa, my understanding is that the extended release capsules only come in 180mg. As it is time released, the initial dose recieved equals about 60mg which is the usual dose of the regular tablets. So instead of taking one 60mg tablet three times a day, you take one extended release 180mg tablet once a day. So essentially you'd be taking the same dose, just in a single capsule. Does that make sense? It helps your body to receive a more regulated dose of the medication. Hope that helps you!! Laura -- guess what I meant to say is if you need to start out with a smaller dose, ask your doctor about using the regular tablets instead of the XR.

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Laura,

That make sense, thanks! I appreciate your help,

Lisa

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lisa -

just "seconding" all that laura said re: the XR.

when i was started on the mestinon as part of the vandy study my starting dose was 30mg 3x/day.

and while obviously we're all different, after working up to the 60mg 3x/day over the past few weeks, we think (no way to know for sure) that my body wasn't able to handle the XR pills properly....maybe b/c of my motility issues...

so like some that responded to my initial question, i seem to have done better with the 60mg tabs.

but who knows...

i didn't have any issues GI-wise (it helped me) when i started at the 30mg, but for those that did i can imagine starting at twice the dose could be even rougher.

obviously it's a decision between you & your doc, but another advantage to the 60mg pills (which can be split pretty easily into quarters) is that if the med doesn't agree with you (which hopefully won't be the case!) it's only in your system for a few hours as opposed to most of the day...

good luck & let us know how it goes.

:) melissa

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  • 2 weeks later...

My husband was just prescribed Mestinon. This is how they suggested he ramp up the medication:

-1/2 60mg tablet 2x/day

- increase to 1/2 tablet 3x/day

- increase to 2 tablets 2x/day

- increase to 3 tablets 3 times/day

At that point, he would be at 180mg/day which is the same dose as the XR version. Assuming that it works for him and that his body can tolerate the dosage he could then switch over to the 180mg XR.

He took his first 1/2 pill last night and his twitching was noticeable to me but he slept fine so he took another 1/2 this morning.

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i'm now going to answer my own question...the XR was NOT a good thing for me at all. essentially my body couldn't deal with the extended release mechanism, probably b/c of my super-slow GI tract, and thus i didn't get an even distribution/release of the mestinon. this ended up in my almost having an "overdose" of sorts...not fun. the neuro i saw last week (head of CC autonomic lab) said he's seen this happen in others with GI motility issues...both his myastenia gravis & dysautonomia patients. so...it's back to the regular for me, even if/when i get back up to the same total daily dose as the XR would be.

:D melissa

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