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


advertisement
Reply
 
Thread Tools Display Modes
Old 11-15-2011, 04:34 PM #1
Ry358 Ry358 is offline
New Member
 
Join Date: Sep 2011
Posts: 5
10 yr Member
Ry358 Ry358 is offline
New Member
 
Join Date: Sep 2011
Posts: 5
10 yr Member
Default ocular mg

i have ocular mg and have tried prenisone and cellcept and mestinon. so far i have had no resolve of the double vision and droopy lids. I am beginning to think that nothing will help ... anyone have ideas???
Ry358 is offline   Reply With QuoteReply With Quote

advertisement
Old 11-16-2011, 07:24 AM #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

I have same problems. The Mestinon helps my droopy eye lid but the double vision was a toughie. I was on Imuran for a year along with Mestinon and IVIG treatments. My double vision clearer up on my second series of IVIG and has stayed pretty good. My Dr took me off IVIG to see if the Imuran was doing any good. Well we decided it wasn't, so now we are switching to Cellcept and Prednisone.
Mike
pingpongman is offline   Reply With QuoteReply With Quote
Old 11-22-2011, 08:42 PM #3
slip slip is offline
Junior Member
 
Join Date: Aug 2011
Location: Ontario Canada
Posts: 12
10 yr Member
slip slip is offline
Junior Member
 
Join Date: Aug 2011
Location: Ontario Canada
Posts: 12
10 yr Member
Wink Hang in there..

Quote:
Originally Posted by Ry358 View Post
i have ocular mg and have tried prenisone and cellcept and mestinon. so far i have had no resolve of the double vision and droopy lids. I am beginning to think that nothing will help ... anyone have ideas???
Hi
When I was put on the combo your are on, it took quite some time to get the best results. How long have you been treated with these drugs?
It took at least a couple of months to get some improvement, and it totally got rid of the double vision around 6-8 months into the treatment.
All the advice I can give it to hang in there

good luck

randy
slip is offline   Reply With QuoteReply With Quote
Old 11-25-2011, 01:20 AM #4
DesertFlower's Avatar
DesertFlower DesertFlower is offline
Member
 
Join Date: Aug 2009
Location: Tucson, AZ
Posts: 466
10 yr Member
DesertFlower DesertFlower is offline
Member
DesertFlower's Avatar
 
Join Date: Aug 2009
Location: Tucson, AZ
Posts: 466
10 yr Member
Smile

I had improvement of my vision and the droopy eyelids after 5 or 6 months of treatment with Mestinon. I also had to get the perfect dosage figured out, it was after a decrease in the dosage that the double vision went away (or at least the worst of it). Too much Mestinon for me causes double vision.

Maybe you need more time on the treatment, or talk with your doctor about adjustments to the dosages.
__________________

.
DesertFlower is offline   Reply With QuoteReply With Quote
Old 11-29-2011, 12:35 AM #5
mopee3 mopee3 is offline
New Member
 
Join Date: Nov 2011
Posts: 1
10 yr Member
mopee3 mopee3 is offline
New Member
 
Join Date: Nov 2011
Posts: 1
10 yr Member
Default

Quote:
Originally Posted by DesertFlower View Post
I had improvement of my vision and the droopy eyelids after 5 or 6 months of treatment with Mestinon. I also had to get the perfect dosage figured out, it was after a decrease in the dosage that the double vision went away (or at least the worst of it). Too much Mestinon for me causes double vision.

Maybe you need more time on the treatment, or talk with your doctor about adjustments to the dosages.
What was too much?

M
mopee3 is offline   Reply With QuoteReply With Quote
Old 11-29-2011, 01:15 AM #6
camsgrams camsgrams is offline
Junior Member
 
Join Date: Mar 2011
Posts: 15
10 yr Member
camsgrams camsgrams is offline
Junior Member
 
Join Date: Mar 2011
Posts: 15
10 yr Member
Default

Quote:
Originally Posted by Ry358 View Post
i have ocular mg and have tried prenisone and cellcept and mestinon. so far i have had no resolve of the double vision and droopy lids. I am beginning to think that nothing will help ... anyone have ideas???
my husband had not seen any improvement with his droopy eyelids untill they increased his prednisone he started on 60 mg prednisone every day for 2 weeks,then every other day for 2 weeks then started decreasing dosage...it took about 2 weeks to see improvement then totally symptom free from about 3 weeks on he also takes cellcept but has not had to take any mestinon for months. he is now at 25 mg prednisone every other day and on the way down...the increased prednisone is what worked...
camsgrams is offline   Reply With QuoteReply With Quote
Old 11-30-2011, 04:43 AM #7
DesertFlower's Avatar
DesertFlower DesertFlower is offline
Member
 
Join Date: Aug 2009
Location: Tucson, AZ
Posts: 466
10 yr Member
DesertFlower DesertFlower is offline
Member
DesertFlower's Avatar
 
Join Date: Aug 2009
Location: Tucson, AZ
Posts: 466
10 yr Member
Default

Quote:
Originally Posted by mopee3 View Post
What was too much?

M
I was initially told to take two 60 mg tablets of Mestinon every day, and that was way too much, I ended up with overdose symptoms. I went down to one pill a day and it was too much for the first four hours and then I crashed at the end of the day (with double vision the entire time). What made the double vision go away was splitting the pills in half and taking 1 to 1 1/2 pills a day, but only 1/2 pill at a time.

I am extremely sensitive to medication, I might be an exception in that low doses work for me. I have since then started taking 1/4 pill at a time and it works even better than the 1/2 pill.

The dosage is different for everybody. I also have taken no other medication for my MG besides the Mestinon.
__________________

.
DesertFlower 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
ocular MG Ry358 Myasthenia Gravis 4 10-18-2011 09:34 AM
Ocular MG becoming generalized? klynng Myasthenia Gravis 11 08-25-2011 09:16 PM
questions with ocular mg whirlwind123 Myasthenia Gravis 4 09-05-2010 08:36 AM
Steroid Rx with Ocular MG catie Myasthenia Gravis 8 08-04-2010 11:26 PM
Ocular MG Kathie Glenn Myasthenia Gravis 4 05-03-2010 12:05 PM


All times are GMT -5. The time now is 05:29 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.