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


advertisement
Reply
 
Thread Tools Display Modes
Old 06-07-2013, 11:41 AM #1
CL777 CL777 is offline
New Member
 
Join Date: Jun 2013
Posts: 3
10 yr Member
CL777 CL777 is offline
New Member
 
Join Date: Jun 2013
Posts: 3
10 yr Member
Default Mestinon

I am new to the group but not to MG. I was diagnosed in 2001, followed by thymectomy. I have had bad times followed by good times. Recently i had relapse and was in the hospital 3 times in 3 weeks. At this time i can't take prednisone anymore because it caused arthritis through out my body and i now have so many stomach issues that it is difficult to take it. I am also having such a problem with mestinon (generic) which i have always taken. I was down to 180 timespam and 30X2 a day. It is very hard to get a correct dose. One way is to much and i get a headache and dizziness and palpitations and a tight throat and gastro problems..the other direction is to low and i become weak all over. I am very frustrated and have been in bed basically for over 2 months. I also am on cellcept 1000x2 which i have never had problems with. Neuro DR's goal is to get me off of mestinon for my stomach.
During the time in the hospital i had 5 IVIG treatments and the last time 5 Plasma Exchanges and am being set up right now for 3 more IVIG treatments.
My question is, do any of you try taking mestinon in other doses then 60mg 45mg 30mg and 15mg? do you break your meds to try to take doses like 35mg or 40mg and etc? I know it's difficult to get a correct dose but i need to make some changes.
CL777 is offline   Reply With QuoteReply With Quote

advertisement
Old 06-07-2013, 12:30 PM #2
4-eyes 4-eyes is offline
Member
 
Join Date: Aug 2009
Posts: 642
10 yr Member
4-eyes 4-eyes is offline
Member
 
Join Date: Aug 2009
Posts: 642
10 yr Member
Default

Mestinon syrup is available. That would allow you to be very precise.

Good luck.
4-eyes is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
CL777 (06-07-2013), sandy56 (06-07-2013), strizzlow20 (06-07-2013)
Old 06-07-2013, 08:57 PM #3
limpy's Avatar
limpy limpy is offline
Member
 
Join Date: May 2012
Posts: 224
10 yr Member
limpy limpy is offline
Member
limpy's Avatar
 
Join Date: May 2012
Posts: 224
10 yr Member
Default

I can usually only take mestinon in thirty mg doses and I just have to take it every two hours. It doesnt bother my stomach anymore at this dosage.
limpy is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
CL777 (06-08-2013), Fortunatos (06-08-2013)
Old 06-08-2013, 03:27 PM #4
cait24's Avatar
cait24 cait24 is offline
Member
 
Join Date: Sep 2012
Location: Newtown, PA
Posts: 709
10 yr Member
cait24 cait24 is offline
Member
cait24's Avatar
 
Join Date: Sep 2012
Location: Newtown, PA
Posts: 709
10 yr Member
Default

I am on 60mg of mestinon every 4 hours (4 times a day) and 180 time span at night. The mestinon is wearing off at about the 3rd hour. I was going to ask the dr at the next visit to try 30mg every 2 hours so I do not get the MG breaking through.


kathie
cait24 is offline   Reply With QuoteReply With Quote
Old 07-10-2013, 02:45 PM #5
CL777 CL777 is offline
New Member
 
Join Date: Jun 2013
Posts: 3
10 yr Member
CL777 CL777 is offline
New Member
 
Join Date: Jun 2013
Posts: 3
10 yr Member
Smile

Quote:
Originally Posted by 4-eyes View Post
Mestinon syrup is available. That would allow you to be very precise.

Good luck.
I was started on the mestinon syrup in the hospital 3 weeks ago and had an IVIG infusion. The syrup is so much better for me to use. I have been set up for monthly IVIG infusions for 6 months (starting next week) until cellcept kicks in more. Been three weeks since my last infusion the 40mg q 6 hrs of mestinon is too much now and i need to lower it. It's great to be out of bed more and doing things around the house after 3 months of being in bed.
CL777 is offline   Reply With QuoteReply With Quote
Old 07-10-2013, 03:43 PM #6
4-eyes 4-eyes is offline
Member
 
Join Date: Aug 2009
Posts: 642
10 yr Member
4-eyes 4-eyes is offline
Member
 
Join Date: Aug 2009
Posts: 642
10 yr Member
Default

That's really good news! Enjoy every minute of improvement!
4-eyes is offline   Reply With QuoteReply With Quote
Reply

Thread Tools
Display Modes

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
How do you take your mestinon? sugrkiss Myasthenia Gravis 2 01-28-2013 09:36 AM
Mestinon lawgirl Myasthenia Gravis 10 08-11-2012 08:09 AM
Mestinon findinghope06 Myasthenia Gravis 16 07-02-2010 01:07 AM
Mestinon Maxwell'sMom Myasthenia Gravis 53 11-14-2009 09:30 PM
Thank You Everyone and Mestinon! Joanmarie63 Myasthenia Gravis 18 10-07-2009 04:13 PM


All times are GMT -5. The time now is 02:55 AM.

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.