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


advertisement
Reply
 
Thread Tools Display Modes
Old 02-23-2011, 09:26 AM #1
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 IVIG Question

Has anyone here had IVIG treatments and it had no effect what so ever? I go today for my 5th treatment and so far no results.
Mike
pingpongman is offline   Reply With QuoteReply With Quote

advertisement
Old 02-23-2011, 09:42 AM #2
pjlla pjlla is offline
Junior Member
 
Join Date: Feb 2011
Posts: 10
10 yr Member
pjlla pjlla is offline
Junior Member
 
Join Date: Feb 2011
Posts: 10
10 yr Member
Default

Quote:
Originally Posted by pingpongman View Post
Has anyone here had IVIG treatments and it had no effect what so ever? I go today for my 5th treatment and so far no results.
Mike
I've done IVIG, the effects aren;t immediate, except for usually getting a headache but that can be remedied with advil or tylenol. For me, the effects were more noticable when my MG was worse. Now, I only really have ocular MG. It's not a cure, it's more of a bandaid to help your body get stronger and hopefully stay there.
pjlla is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
pingpongman (02-23-2011)
Old 02-23-2011, 09:52 AM #3
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

So you don't notice any change until some time after the treatments are complete? I guess the effect is different for each person.
Thanks
Mike
pingpongman is offline   Reply With QuoteReply With Quote
Old 02-23-2011, 01:54 PM #4
tysondouglass's Avatar
tysondouglass tysondouglass is offline
Member
 
Join Date: Oct 2009
Posts: 474
15 yr Member
tysondouglass tysondouglass is offline
Member
tysondouglass's Avatar
 
Join Date: Oct 2009
Posts: 474
15 yr Member
Default

Hey mike- I've been getting ivig for 6-7 months continually now, and it varies when I start feeling the effects.

My specialist says that it usually takes a week- or 2 for the effects to start kicking in.

The purpose of ivig is to give others antibodies to bind against yours to destroy them- I believe and this all takes time.

Hope you start feeling it soon
tysondouglass is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
pingpongman (02-23-2011)
Old 02-23-2011, 05:29 PM #5
brandonc brandonc is offline
Junior Member
 
Join Date: Apr 2010
Location: Chicago Suburbia
Posts: 74
10 yr Member
brandonc brandonc is offline
Junior Member
 
Join Date: Apr 2010
Location: Chicago Suburbia
Posts: 74
10 yr Member
Default

Quote:
Originally Posted by tysondouglass View Post
Hey mike- I've been getting ivig for 6-7 months continually now, and it varies when I start feeling the effects.

My specialist says that it usually takes a week- or 2 for the effects to start kicking in.

The purpose of ivig is to give others antibodies to bind against yours to destroy them- I believe and this all takes time.

Hope you start feeling it soon
from what my doctor says, IVIG is pretty much designed just to flood your body with non specific antibodies so your immune system doesnt have to work so much....and in theory stop making as much of the bad antibodies that destroy the acetylcholene receptors.
brandonc is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
pingpongman (02-23-2011)
Old 02-23-2011, 09:40 PM #6
catie catie is offline
Junior Member
 
Join Date: Feb 2010
Posts: 99
10 yr Member
catie catie is offline
Junior Member
 
Join Date: Feb 2010
Posts: 99
10 yr Member
Default

Quote:
Originally Posted by pingpongman View Post
Has anyone here had IVIG treatments and it had no effect what so ever? I go today for my 5th treatment and so far no results.
Mike
I had IVIG several months ago, which amounted to five days in a row of IV therapy. I did see some improvement in my symptoms several days after the treatment was completed. Unfortunately, the improvement was somewhat short-lived. I have not received any additional treatments, partially due to the cost of the IVIG.

I'm keeping my fingers crossed that you see some improvement in the next week or two.

Cate
catie is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
pingpongman (02-24-2011)
Old 02-24-2011, 07:55 AM #7
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

Thanks Cate
My doctor spread my treatments out over 3 weeks. I'm thinking he did that because of my age. He is hoping the IVIG treatments will help me until the Imuran kicks in. The mestinon I take only helps me maintain my current status and doesn't improve anything however if I miss a dose my symtoms get worse. At least you and Tyson give me a glimmer of hope.
Mike

Quote:
Originally Posted by catie View Post
I had IVIG several months ago, which amounted to five days in a row of IV therapy. I did see some improvement in my symptoms several days after the treatment was completed. Unfortunately, the improvement was somewhat short-lived. I have not received any additional treatments, partially due to the cost of the IVIG.

I'm keeping my fingers crossed that you see some improvement in the next week or two.

Cate
pingpongman 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
IVIG Question bluesky Myasthenia Gravis 5 09-29-2010 09:02 PM
Question, should I get IVIG tysondouglass Myasthenia Gravis 4 09-28-2010 07:11 PM
Question about IVIG tysondouglass Myasthenia Gravis 2 05-28-2010 11:51 AM
day 2 of IVIG... sugrkiss Myasthenia Gravis 1 03-05-2010 04:59 PM
Question about what would you do concerning IVIG JCPA Myasthenia Gravis 9 09-21-2009 05:44 PM


All times are GMT -5. The time now is 06:21 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.