Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS.


advertisement
Reply
 
Thread Tools Display Modes
Old 11-12-2012, 09:38 AM #11
Quandry's Avatar
Quandry Quandry is offline
Member
 
Join Date: Nov 2012
Location: Arizona
Posts: 131
10 yr Member
Quandry Quandry is offline
Member
Quandry's Avatar
 
Join Date: Nov 2012
Location: Arizona
Posts: 131
10 yr Member
Default

At least I had one good day on Saturday, but I paid for it yesterday. My adult daughter wanted to go back to Walmart again, so I had to use one of the electric carts to get around. My muscles were weak again and I guess I did so much yesterday that the joint in my big toe was hurting making me limp. I tend to push myself to walk even though it's hard, but yesterday there was no way.

Maybe it's not the Mestinon dosage and maybe I just have to accept my limitations.
Quandry is offline   Reply With QuoteReply With Quote

advertisement
Old 11-14-2012, 12:08 AM #12
JennieM JennieM is offline
Junior Member
 
Join Date: Nov 2012
Posts: 16
10 yr Member
JennieM JennieM is offline
Junior Member
 
Join Date: Nov 2012
Posts: 16
10 yr Member
Default

Quote:
Originally Posted by Quandry View Post
That half dose of mestinon every four hours is working. I walked all around Walmart today.
I've had MG for 30 years. Many years all I needed was 1/4 to 1/2 Mestinon to alleviate my symptons. At those times, taking 60 mg would cause me to overdose and increase my weakness. If you find that the 1/2 is a little too much (periods of inactivity), try 1/4.
JennieM is offline   Reply With QuoteReply With Quote
Old 11-14-2012, 11:39 AM #13
Quandry's Avatar
Quandry Quandry is offline
Member
 
Join Date: Nov 2012
Location: Arizona
Posts: 131
10 yr Member
Quandry Quandry is offline
Member
Quandry's Avatar
 
Join Date: Nov 2012
Location: Arizona
Posts: 131
10 yr Member
Default

Quote:
Originally Posted by JennieM View Post
I've had MG for 30 years. Many years all I needed was 1/4 to 1/2 Mestinon to alleviate my symptons. At those times, taking 60 mg would cause me to overdose and increase my weakness. If you find that the 1/2 is a little too much (periods of inactivity), try 1/4.
You're right, I think I need to adjust the dosages. Not only am I having breathing trouble right now but my chin is drooping dramatically. I'm going to try and rest today instead of pushing myself. I haven't been resting like I should.
Quandry is offline   Reply With QuoteReply With Quote
Old 11-14-2012, 10:41 PM #14
JennieM JennieM is offline
Junior Member
 
Join Date: Nov 2012
Posts: 16
10 yr Member
JennieM JennieM is offline
Junior Member
 
Join Date: Nov 2012
Posts: 16
10 yr Member
Default

Quote:
Originally Posted by Quandry View Post
You're right, I think I need to adjust the dosages. Not only am I having breathing trouble right now but my chin is drooping dramatically. I'm going to try and rest today instead of pushing myself. I haven't been resting like I should.
What I have always done is take the minimum - maybe 15 mg - then add 15 every 1/2 hour (that's how long it takes to work) until I feel better. Don't forget that too much makes you feel as weak as too little.
JennieM is offline   Reply With QuoteReply With Quote
Old 11-16-2012, 04:58 PM #15
Quandry's Avatar
Quandry Quandry is offline
Member
 
Join Date: Nov 2012
Location: Arizona
Posts: 131
10 yr Member
Quandry Quandry is offline
Member
Quandry's Avatar
 
Join Date: Nov 2012
Location: Arizona
Posts: 131
10 yr Member
Default

My muscles became weaker when I lowered the dose. Yesterday I tried going back to the full 60 mg dose, but every 4 hours. I did much better. I guess it wears off too fast and lowering it wasn't the right thing for me to do.

I saw the doctor today and he said that it was alright to take every four hours, but not to exceed 1500 mg. in a 24 hour period. He is going to put me on Imuran after some blood work -- a cbc and cmp, and he's sending me for a CT scan of my thymus.

Even though he's a Rheumatologist, he's doing a far greater job than any Neurologist I've seen. I think I'll keep going as long as he can help.
Quandry is offline   Reply With QuoteReply With Quote
Old 11-20-2012, 10:38 PM #16
JennieM JennieM is offline
Junior Member
 
Join Date: Nov 2012
Posts: 16
10 yr Member
JennieM JennieM is offline
Junior Member
 
Join Date: Nov 2012
Posts: 16
10 yr Member
Default

Quote:
Originally Posted by Quandry View Post
My muscles became weaker when I lowered the dose. Yesterday I tried going back to the full 60 mg dose, but every 4 hours. I did much better. I guess it wears off too fast and lowering it wasn't the right thing for me to do.

I saw the doctor today and he said that it was alright to take every four hours, but not to exceed 1500 mg. in a 24 hour period. He is going to put me on Imuran after some blood work -- a cbc and cmp, and he's sending me for a CT scan of my thymus.

Even though he's a Rheumatologist, he's doing a far greater job than any Neurologist I've seen. I think I'll keep going as long as he can help.
Good luck with the Imuran. I've been taking it for about 4 years. I've had some issues but overall it helps. If you need 60mg, take it on time. It sounds like you let it wear off and then it's hard to get feeling better again. My doctor tells me to never go more than 4 hours without 60mg.
JennieM is offline   Reply With QuoteReply With Quote
Old 11-26-2012, 12:08 PM #17
Quandry's Avatar
Quandry Quandry is offline
Member
 
Join Date: Nov 2012
Location: Arizona
Posts: 131
10 yr Member
Quandry Quandry is offline
Member
Quandry's Avatar
 
Join Date: Nov 2012
Location: Arizona
Posts: 131
10 yr Member
Default

Thank you all for your replies. Sorry I haven't responded, my eyes are blurry lately. I have a hard time reading anything. I've had a rough week because I had to move to another house. I wonder if I should up my dose even more when I do more work than normal.
Quandry is offline   Reply With QuoteReply With Quote
Reply


Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
Mestinon high dose long term StephC Myasthenia Gravis 8 01-18-2013 11:24 PM
Mestinon dose StephC Myasthenia Gravis 1 09-19-2012 08:24 PM
Mestinon dose--totally confused Stellatum Myasthenia Gravis 9 03-17-2010 09:12 PM
Missed Dose of Depakote = Migraine? Nathan1097 Bipolar Disorder 7 11-06-2006 02:35 PM
Double dose Copaxone more effective than single dose xo++ Multiple Sclerosis 6 10-01-2006 03:25 AM


All times are GMT -5. The time now is 01:12 PM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.