This Is MS Multiple Sclerosis Community: Knowledge & Support

Welcome to the world's leading forum on Multiple Sclerosis research, support, and knowledge. For over 10 years, This is MS has provided an unbiased community dedicated to Multiple Sclerosis patients, caregivers, and affected loved ones.
It is currently Sun May 19, 2013 4:00 am


All times are UTC - 8 hours [ DST ]




Post new topic Reply to topic  [ 73 posts ]  Go to page Previous  1, 2, 3, 4, 5
Author Message
 Post subject:
PostPosted: Fri Jun 01, 2007 1:44 am 
Offline
Family Elder
User avatar

Joined: Wed Jul 27, 2005 3:00 pm
Posts: 2684
Location: Sydney, Australia
carolew,

from memory, you were doing well on statins, and quit them to enter the fty-720 study? When I spoke to a neuro running an FTY720 study, he said I could continue with my lipitor. Have you gone back?

_________________
Gilenya, 80mg Lipitor, Inosine, Minocycline, Suppliments galore.
3 CCSVI treatments, no major noteable benefits thus far.


Top
 Profile  
 
 Post subject:
PostPosted: Fri Jun 01, 2007 1:58 pm 
Offline
Family Elder
User avatar

Joined: Fri Nov 05, 2004 4:00 pm
Posts: 553
Location: Ottawa, Ont. Canada
Dear Cure
Oh yes I did take it again but the effect is not as good. It's as though damage was done during the month that I was off. I can't stop this medication. If I miss one day, my left leg becomes ssoosoo spastic. I still need it but it is not enough anymore. I should have staid on it the whole time. How are you doing? carole


Top
 Profile  
 
 Post subject:
PostPosted: Fri Jun 01, 2007 1:59 pm 
Offline
Family Elder
User avatar

Joined: Fri Nov 05, 2004 4:00 pm
Posts: 553
Location: Ottawa, Ont. Canada
Thank you Terry for your nice words of encouragement, believe me, I need them now more than ever. carole


Top
 Profile  
 
 Post subject:
PostPosted: Tue Jun 05, 2007 3:16 pm 
Offline
Newbie

Joined: Thu Oct 12, 2006 3:00 pm
Posts: 9
Hi carolew!

Question: did you had fall backs/relapses in those 6 months?

I don't think your 6 month period was in vain because the researchers get precious material to compare. Also they should give you steroids (prednisolone) if you do get a relapse. It's something I insisted upon. That should keep you out of the danger-zone.

Personally I'd like to thank you for providing the (placebo) data. It will give all of us a chance to use FTY720 in the future. The FDA has to approve it...

I am now roughly 3 months on FTY720 and I don't feel any side effect anymore but I've remained relapse free and I hope it'll stay that way! The moment I hit 7-8 months and if I did not have any relapse, then FTY, for me, is a success since I usually get a relapse every 6 months.

J.


Top
 Profile  
 
 Post subject:
PostPosted: Wed Aug 29, 2007 5:15 am 
Offline
Family Elder
User avatar

Joined: Wed Jul 27, 2005 3:00 pm
Posts: 2684
Location: Sydney, Australia
just found this PDF, haven't read it, but it may help satisfy some peoples search for info on it.
NIBR03_Feature_exerpt.pdf


Top
 Profile  
 
 Post subject:
PostPosted: Wed Aug 29, 2007 5:53 am 
Offline
Family Elder

Joined: Wed May 03, 2006 3:00 pm
Posts: 6063
00


Last edited by Lyon on Mon Jun 20, 2011 3:38 pm, edited 1 time in total.

Top
 Profile  
 
 Post subject:
PostPosted: Wed Aug 29, 2007 6:49 am 
Offline
Family Elder
User avatar

Joined: Thu Dec 01, 2005 4:00 pm
Posts: 846
COB,

That was a thorough explanation and in layman terms too. Very interesting read.

gwa


Top
 Profile  
 
 Post subject:
PostPosted: Wed Aug 29, 2007 6:04 pm 
Offline
Family Elder
User avatar

Joined: Fri Nov 05, 2004 4:00 pm
Posts: 553
Location: Ottawa, Ont. Canada
Hey LeoDaV,
I just saw your post despite the fact that I check this site everyday. I am confused.
Anyway, I have been on this study since Dec'06. No relapses but not doing that great despite intense physio. My EDSS score is not changing But I know that my walking is more difficult.
I used to get attacks every 10 years, than it was 3 years, then I think I became SPMS which means no more attacks but just deterioration slowly. I surely didn't need the steroids but I know I want the real thing i.e.FTY 720 because it really seems to be effective.
I never had any side effects. I wish I did.
I will persist because there is nothing else given orally to date.
So keep making music Leo and take care all. Carole


Top
 Profile  
 
 Post subject:
PostPosted: Wed Aug 29, 2007 6:15 pm 
Offline
Family Elder
User avatar

Joined: Fri Nov 05, 2004 4:00 pm
Posts: 553
Location: Ottawa, Ont. Canada
Thanks CureorBust, that was an excellent article. Carole


Top
 Profile  
 
 Post subject:
PostPosted: Thu Aug 30, 2007 2:49 am 
Offline
Family Elder
User avatar

Joined: Wed Jul 27, 2005 3:00 pm
Posts: 2684
Location: Sydney, Australia
sure, now I am going to have to read it...


Top
 Profile  
 
 Post subject: Just Started Trial
PostPosted: Sun Sep 23, 2007 7:04 am 
Offline
Newbie
User avatar

Joined: Sun Nov 14, 2004 4:00 pm
Posts: 1
Just started FTY720 trial this week and from what I can tell, I think it's the real stuff. BP rate way up, difficulty breathing at times, minor chest pain (very minor actually). My heartrate though did not go down the first dose. mine actually bounced up and down with some major swing ranges.


Top
 Profile  
 
 Post subject:
PostPosted: Mon Sep 24, 2007 5:02 am 
Offline
Family Elder
User avatar

Joined: Fri Nov 05, 2004 4:00 pm
Posts: 553
Location: Ottawa, Ont. Canada
Excellent news, very happy for you. Keep us posted please.


Top
 Profile  
 
 Post subject:
PostPosted: Mon Sep 24, 2007 4:56 pm 
Offline
Family Elder
User avatar

Joined: Wed May 31, 2006 3:00 pm
Posts: 122
Don't know if this is new or not, but I found it in the midst of an article...

Novartis completes agreement with Bayer Schering related to Betaseron rights and manufacturing

"...a once-daily oral therapy FTY720 (fingolimod), which is currently in Phase III trials. Novartis expects to submit FTY720 for US and EU approvals in 2009."

http://www.thisisms.com/ftopic-reply-2929.html


Top
 Profile  
 
Display posts from previous:  Sort by  
Post new topic Reply to topic  [ 73 posts ]  Go to page Previous  1, 2, 3, 4, 5

All times are UTC - 8 hours [ DST ]


Related topics
 Topics   Author   Replies   Views   Last post 
There are no new unread posts for this topic. FTY720

bromley

1

1402

Sun Aug 07, 2005 3:44 am

carolew View the latest post

There are no new unread posts for this topic. FTY720

bromley

1

1435

Sun Aug 07, 2005 3:48 am

carolew View the latest post

There are no new unread posts for this topic. FTY720

bromley

1

1514

Sat Oct 01, 2005 12:18 pm

carolew View the latest post

There are no new unread posts for this topic. FTY720

bromley

4

1806

Thu Mar 23, 2006 11:32 am

billf View the latest post

There are no new unread posts for this topic. FTY720

bromley

1

1491

Sun Jun 04, 2006 6:30 am

lorienhome View the latest post

 


Who is online

Users browsing this forum: No registered users


You cannot post new topics in this forum
You cannot reply to topics in this forum
You cannot edit your posts in this forum
You cannot delete your posts in this forum

Search for:
Jump to: