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 Tue May 21, 2013 12:49 pm


All times are UTC - 8 hours [ DST ]




Post new topic Reply to topic  [ 6 posts ] 
Author Message
PostPosted: Wed Feb 27, 2013 4:08 am 
Offline
Volunteer Moderator
User avatar

Joined: Sat Nov 20, 2004 4:00 pm
Posts: 2713
Taking Gilenya after stopping Tysabri doesn't suppress MS reactivation
http://www.overcomingmultiplesclerosis. ... ctivation/


Top
 Profile  
 
PostPosted: Wed Feb 27, 2013 6:37 am 
Offline
Family Elder
User avatar

Joined: Tue May 25, 2004 3:00 pm
Posts: 2109
Location: London, ON, Canada
NHE wrote:
Taking Gilenya after stopping Tysabri doesn't suppress MS reactivation
http://www.overcomingmultiplesclerosis. ... ctivation/


Cranking out $ 60,000 a year for a drug that puts a MS patient in this kind of situation!!! And you wonder why our health care system is in such a financial mess.


Top
 Profile  
 
PostPosted: Wed Feb 27, 2013 12:11 pm 
Offline
Newbie

Joined: Tue Jan 10, 2012 1:29 pm
Posts: 9
Thank you for sharing this information. I am desperate to find a solution to slow my post-Tysabri rebound. I stopped Tysabri in May 2011 due to AB to Nat and JCV+. Since then month over month progression. I will probably return to Tysabri despite super high risk of PML (1 in 100) because at this rate of progression there won't be any difference.

If anyone hears of any treatement that works to slow post Tysabri rebound effect please advise.

Thank you.


Top
 Profile  
 
PostPosted: Thu Feb 28, 2013 5:12 pm 
Offline
Family Elder
User avatar

Joined: Wed Jul 27, 2005 3:00 pm
Posts: 2689
Location: Sydney, Australia
Does anyone know the effects and / or viability/safety of taking a steroid pulse and or taper after coming off Tysabri?


Top
 Profile  
 
PostPosted: Fri Mar 01, 2013 5:19 am 
Offline
Volunteer Moderator
User avatar

Joined: Sat Nov 20, 2004 4:00 pm
Posts: 2713
CureOrBust wrote:
Does anyone know the effects and / or viability/safety of taking a steroid pulse and or taper after coming off Tysabri?


Several years ago I went to a talk where the doc discussed Tysabri. This is what he had to say about treating PML...

Quote:
There’s a danger of PML if the CD4 count gets below 400.
Touch program, and/or Dr. Macaluso, monitors CD4 count.
Patient is off of Tysabri if CD4 count is less than 500.
If PML is determined, treatment is plasma exchange 5x over a 10 day period. Steroids are given 10 days after plasma exchange in order to prevent massive brain inflammation from the immune system’s attack on the PML virus (immune system rebound inflammation aka IRIS, or Immune Reconstitution Inflammatory Syndrome).


Some of this may have changed since then since that was May 2009. However, if steroids are good for helping to treat PML post Tysabri, then it's likely that they're ok post Tysabri without PML. As always, consult with your doctor for your specific case.

NHE


Top
 Profile  
 
PostPosted: Fri Mar 01, 2013 6:47 am 
Offline
Family Elder
User avatar

Joined: Wed Jul 27, 2005 3:00 pm
Posts: 2689
Location: Sydney, Australia
It sounds to me that the steroids were not used to treat the PML, but specifically the inflammation caused by the bodies reaction to PML (ie the attack of). They even specifically waited for 10 days, before administering the steroids, which again implies they did not assist in the actual treatment of PML.

However, I do agree it would appear that if you are not identified as having PML (or at risk of having or developing PML), steroids would appear to be safe after Tysabri. Therefore, maybe steroids would assist those coming off Tysabri for reasons other than a PML diagnosis.


Top
 Profile  
 
Display posts from previous:  Sort by  
Post new topic Reply to topic  [ 6 posts ] 

All times are UTC - 8 hours [ DST ]


Related topics
 Topics   Author   Replies   Views   Last post 
There are no new unread posts for this topic. Shall I Stop Rebif now waiting for Tysabri?

laura55

4

2487

Mon Jan 21, 2008 2:10 pm

laura55 View the latest post

There are no new unread posts for this topic. Irish Sunday Post / Lars interview

better2gether

8

2149

Mon Mar 07, 2005 12:36 am

Arron View the latest post

There are no new unread posts for this topic. Tysabri in the UK :{

JFH

2

2252

Tue Jan 25, 2005 11:04 pm

stsolakos View the latest post

There are no new unread posts for this topic. Tysabri

mkeigan

0

1904

Tue Mar 01, 2005 6:41 am

mkeigan View the latest post

There are no new unread posts for this topic. Tysabri Still Down, But Not Out

Melody

0

1558

Tue Aug 09, 2005 10:10 am

Melody 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: