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


advertisement
Reply
 
Thread Tools Display Modes
Old 10-25-2012, 07:22 PM #1
Spike Spike is offline
New Member
 
Join Date: Jul 2010
Posts: 4
10 yr Member
Spike Spike is offline
New Member
 
Join Date: Jul 2010
Posts: 4
10 yr Member
Default Success (so far) story

I thought I'd post what is working for me after about 2.5 years of treatment since my symptoms are recently pretty much in remission. When I got my dx I wasn't able to walk more than a block at a time. Now I can walk about 5mi/day (I was an ultra-marathon runner pre-MG):

Prednisone 20mg/day (down from 60mg)
CellCept 1000mg morning 1000g evening
Mestinon 60mg in the morning (I've stopped using the rest of the day since the symptoms are gone but it very helpful before)
IVIG 1/week

The IVIG is hideously expensive, but it's worked!
Spike is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
StephC (10-26-2012)

advertisement
Old 10-25-2012, 07:40 PM #2
pingpongman's Avatar
pingpongman pingpongman is offline
Member
 
Join Date: Aug 2010
Location: South Carolina
Posts: 714
10 yr Member
pingpongman pingpongman is offline
Member
pingpongman's Avatar
 
Join Date: Aug 2010
Location: South Carolina
Posts: 714
10 yr Member
Default

Interesting, that's the same treatment I get now except the Ivig. I think my Cellcept kicked in about 6 weeks ago. Now I think Mestinon is not doing a thing. I have stopped the 180 time release with no effect and often miss a 60mg during the day.
Mike
pingpongman is offline   Reply With QuoteReply With Quote
Old 10-27-2012, 10:22 AM #3
denik258 denik258 is offline
Junior Member
 
Join Date: Jul 2012
Posts: 13
10 yr Member
denik258 denik258 is offline
Junior Member
 
Join Date: Jul 2012
Posts: 13
10 yr Member
Default

Quote:
Originally Posted by Spike View Post
I thought I'd post what is working for me after about 2.5 years of treatment since my symptoms are recently pretty much in remission. When I got my dx I wasn't able to walk more than a block at a time. Now I can walk about 5mi/day (I was an ultra-marathon runner pre-MG):

Prednisone 20mg/day (down from 60mg)
CellCept 1000mg morning 1000g evening
Mestinon 60mg in the morning (I've stopped using the rest of the day since the symptoms are gone but it very helpful before)
IVIG 1/week

The IVIG is hideously expensive, but it's worked!
Congratulations! I am a runner that has had to give it up yet again. I was never a marathoner, but had worked back up to 3 to 4 miles. I am hoping to have success with the Prednisone so I can once again run.
denik258 is offline   Reply With QuoteReply With Quote
Old 10-27-2012, 11:40 AM #4
alice md's Avatar
alice md alice md is offline
Member
 
Join Date: Sep 2009
Posts: 884
15 yr Member
alice md alice md is offline
Member
alice md's Avatar
 
Join Date: Sep 2009
Posts: 884
15 yr Member
Default

It is always nice to hear of people who are doing better.

Thanks for sharing this with all of us.
alice md 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
L4-S1 Fusion Success Story kiwimike Spinal Disorders & Back Pain 295 05-31-2016 07:30 AM
Post-Concussion Success Story! carmell Traumatic Brain Injury and Post Concussion Syndrome 8 01-31-2012 02:59 AM
My Struggle With PCS - A Success Story blackzest Traumatic Brain Injury and Post Concussion Syndrome 14 07-19-2011 08:55 PM
Have a TOS success story? olecyn Thoracic Outlet Syndrome 5 07-13-2011 09:22 AM
just a nice success story Stellatum Myasthenia Gravis 1 06-14-2011 02:09 PM


All times are GMT -5. The time now is 07:17 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.