Another Mestinon observation
 

Hi Everyone - another Mestinon thread. First off....I am lucky enough to be in between neuro's (ha ha), so I'm waiting for my appointment on the 30th. I will ask these questions then as well.

But I have been on 60 mg generic 3X a day and a timespan at night at bedtime. I have noticed that I have been struggling with my speech (tightness, hoarseness, etc.) in the afternoon, and slight heavy chested feeling at times.

Last night, I went to bed and woke up at 3 a.m. and realized I forgot my timespan. So I took it then and skipped the morning pill. And I felt better this morning into noon than I have since I started the full regimen of round the clock meds. So at 2 p.m. I decided to take 1/2 of a 60 mg pill. And my speech has been much better than what it has been.

I know that you are not supposed to tweak your dosage w/out your Dr's approval, but since my most recent Dr. left the clinic and I had to switch to a new clinic, I cannot get in til the 30th. So I will be very careful with this, but I think I will try 1/2 a pill every 3 or 4 hours and see how that works. My eyes aren't as jumpy now either. I think 60 X 3 plus the timespan is too much.

So, thanks for listening to me jabber on about this. I'd love to hear any input you may have.

Jen

My doctor actually gave me a schedule to follow initially & told me to tweak my mestinon as needed,as my symptoms required. He did the same thing when he switched me to neostigmine. As a matter of fact, he called me this week to see what my dosage of neostigmine was so he could call in my refill. I like the fact that he recognizes that I know my body & can tweak the dosage so long as I know the acceptable range. Lessening the brreathing issues played a big role in my new dose, so I can relate to your "heavy chest" comment. Good luck with the new neuro!!

My doctor has always told me to tweak my dosage and to use it like Tylenol, as needed, though we established a base dose. I have been told to use it on my own and play with it as to find out what works best for me and that it can change day to day.

I did not know that heavy feeling in the chest was myasthenia related. I get that a lot. Also I have been hoarse a lot and I feel when I am hoarse it means I've been overdoing it and need to slow down; do you think that is true?

Yes, Tracy...the hoarse voice and the heavy feeling in chest are both warnings to you from your MG. And remember, Mestinon is a great drug...but not a miracle drug. Too much can bring on as much or more weakness than too little.

My neuro - like yours - has given me great leeway in how I dose. However, mine put an upper limit (not a minimum) on dosage. I am never to take more than 120 mg in 3 hour window - and if I feel like I would like to...it's time to make an appointment!

When is your next neuro appointment? I hope it is soon.

I was having diarrhea with the generics during the daytime but not with the Mestinon Timespan at night. So I called and spoke with the nurse about asking the neuro if I could just take a Timespan in the morning and then the one at night.

It's just been 2 days and I am already feeling better on this dose.

Gabriella

Just to keep this post interesting and to show how different everyone is, I was taking 180mg at a time (not timespan) 3-4 times a day with zero effects or side effects.

A guy local to me was taking 300mg first thing in the morning to fix his dv.

THIS IS NOT FOR EVERYONE PLEASE TALK TO YOUR NEURO.

Bye Bye Mestinon
 

Well over the weekend everything changed again as I had 6 episodes of diarrhea on Sunday taking the night dose of Timespan and the morning dose as well.

I went back to neuro today and he is taking me off mestinon and restarting the IVIG infusions.

Gabriella

I just saw my neuro, and even though I'd just been in the ER and almost admitted, and told him I was getting worse he gave me an appt for SIX MONTHS when he usually sees me every two. I'm going to look for someone else.

My voice has gotten so hoarse lately, it wasn't like this not long ago; now it is hoarse a lot.