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 Wed Jun 19, 2013 2:02 pm


All times are UTC - 8 hours [ DST ]




Post new topic Reply to topic  [ 92 posts ]  Go to page Previous  1, 2, 3, 4, 5, 6, 7  Next
Author Message
 Post subject:
PostPosted: Mon Nov 27, 2006 4:38 pm 
Offline
Family Member
User avatar

Joined: Fri Oct 20, 2006 3:00 pm
Posts: 93
And have there been instances of a person who initially tested negative but when retested was found to have MRTCs? In other words, is this a permanent state (not being able to make them) or something transient that can be influenced by for instance other medication?


Top
 Profile  
 
 Post subject:
PostPosted: Mon Nov 27, 2006 6:02 pm 
Offline
Family Elder
User avatar

Joined: Fri Nov 05, 2004 4:00 pm
Posts: 553
Location: Ottawa, Ont. Canada
I really hope they will retest you Flip. Good luck, Carole


Top
 Profile  
 
 Post subject:
PostPosted: Mon Nov 27, 2006 6:29 pm 
Offline
Family Elder

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


Last edited by Lyon on Mon Jun 20, 2011 2:21 pm, edited 1 time in total.

Top
 Profile  
 
 Post subject:
PostPosted: Mon Nov 27, 2006 8:27 pm 
Offline
Family Elder
User avatar

Joined: Fri Jun 25, 2004 3:00 pm
Posts: 270
Location: Near Chicago
flipflopper wrote:
In case some of you are wondering, when I spoke with the nurse, she told me that somebody else was tested the same week I was. That person also didn't make MRTCs.


I'm so sorry Flipflopper. :( I hope they'll retest you and you'll have the MRTC's.

I don't get tested until Dec. 29th, I hope I can produce them. Are you considering going back on Copaxone?

I've been thinking what might happen in my case, if I'll do that, or see if the neuro has another trial I might be eligible for.

_________________
Take care, Ewizabeth Previously Avonex, Rebif & Copaxone RRMS ~Tysabri, 31 infusions, ended 9/09. Starting Copaxone 12/09, waiting for Cladribine to be approved in 2010.


Top
 Profile  
 
 Post subject:
PostPosted: Tue Nov 28, 2006 12:37 am 
Offline
Family Elder

Joined: Wed May 03, 2006 3:00 pm
Posts: 303
Location: Calgary, AB, Canada
FF
Sorry to hear that you could not make MRTC's. I think I also remember hearing that they can retest you.
take care,
NN


Top
 Profile  
 
 Post subject:
PostPosted: Tue Nov 28, 2006 8:55 am 
Offline
Family Elder
User avatar

Joined: Wed Nov 09, 2005 4:00 pm
Posts: 183
Lyon wrote:
I'm sorry to hear that flipflopper!

Bob




carolew wrote:
I really hope they will retest you Flip. Good luck, Carole



ewizabeth wrote:

I'm so sorry Flipflopper. :( I hope they'll retest you and you'll have the MRTC's.

.




sh8un wrote:
FF
Sorry to hear that you could not make MRTC's. I think I also remember hearing that they can retest you.
take care,
NN





Thanks everyone! :)



I hope you will make MRTCs Dec 29th Ewizabeth!


Top
 Profile  
 
 Post subject:
PostPosted: Tue Nov 28, 2006 10:13 am 
Offline
Family Elder
User avatar

Joined: Wed Nov 09, 2005 4:00 pm
Posts: 183
connieb wrote:
And have there been instances of a person who initially tested negative but when retested was found to have MRTCs?



I came back to this site yesterday to ask this very question but I saw that you had already posted it Connieb. That is something I would love to know. Some medications can have an impact on MRTCs.

I have numerous questions about MRTCs. All the questions I have asked regarding MRTCs at the hospital I went to where answered by "We don't know yet".

With time, we should get more information and better answers when it comes to MRTCs


Top
 Profile  
 
 Post subject:
PostPosted: Tue Nov 28, 2006 1:35 pm 
Offline
Family Elder

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


Last edited by Lyon on Mon Jun 20, 2011 2:23 pm, edited 1 time in total.

Top
 Profile  
 
 Post subject:
PostPosted: Tue Nov 28, 2006 4:30 pm 
Offline
Family Elder
User avatar

Joined: Wed Nov 09, 2005 4:00 pm
Posts: 183
Lyon wrote:
but at one point it stated "everyone makes MRTc's, not just those afflicted with MS", which I found a little surprising.
Bob



I'm pretty sure I read this a while ago too.


But I still have questions. Obviously, we are seeing from some of the people being tested for this clinical trial that not everyone with ms is producing MRTCs (at least not all the time). Let's assume for a moment that you can't always identify them in the blood, then wouldn't statements such as "All patients in the Dose 2 group had a 100% reduction in MRTC counts at the week five follow-up visit." from the phase I/II Tovaxin trial be a little less impressive?

How would you know if the autologous vaccination is truly working or that you just tested a patient during a period of time where MRTCs were harder to identify in the blood (with the method that Opexa is using)?


I have RRMS and I had numerous relapses in the last 2 years. Even if Opexa didn't see any MRTCs in my blood, that doesn't mean that my progression will be slowed or stopped in any way.


Perhaps MRTCs are more of an issue in the very beginning of the disease and then other processes kick in?


I guess I just find it a little strange that nobody is able to answer any of the questions I have about MRTCs. A good understanding of MRTCs is essential for this autologous vaccine!


If anyone can enlighten me and answer some questions, that would be great! :)


Top
 Profile  
 
 Post subject:
PostPosted: Tue Nov 28, 2006 5:32 pm 
Offline
Family Elder
User avatar

Joined: Mon Sep 11, 2006 3:00 pm
Posts: 2197
Location: Dayton, Ohio USA
That is the $64,000.00 question. I did have to donate more blood, so I think that how well you produce them does vary since I had just done it 8 weeks ago. My research coordinator said they make up new batches each time from current blood, but that doesn't fit what he told me about each patient getting their vaccine when the trial is done, so I may have not heard that part correctly.

Even if Tovaxin isn't the one, I hope they are going down the right alley in terms of a mechanism to stop MS from progressing. Let's all hope so that we can see some results in OUR lifetime!


Top
 Profile  
 
 Post subject:
PostPosted: Tue Nov 28, 2006 9:18 pm 
Offline
Family Elder

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


Last edited by Lyon on Mon Jun 20, 2011 2:24 pm, edited 1 time in total.

Top
 Profile  
 
 Post subject:
PostPosted: Wed Nov 29, 2006 2:59 pm 
Offline
Family Elder
User avatar

Joined: Tue Nov 28, 2006 4:00 pm
Posts: 100
Location: Versailles, Kentucky
Hello all,

This is my first post here so hopefully it will work out as I intend it to. There is some confusion here on what the initial screening for MRTC's is for. The Tovaxin protocol uses as bait for MRTC's 6 different fragments of myelin, which is a BIG protein. The initial screening determines if you are producing MRTC's that react with one or all of those 6 myelin fragments (called epitopes). They chose those 6 fragments because in most cases, if you have MRTC's they recognize one or more of those 6 epitopes. A negative result means that they could not detect MRTC's that bind to any of those epitopes not that you do not produce MRTC's. It's just that your MRTC's recognize different fragments of myelin or for some reason, like steroid usage, the MRTC's are undetectable.

On another question that was raised, both people with MS and without make MRTC's. In folks without MS the immune system realizes that those cells are "self reactive" and they are not allowed to expand. In folks with MS at certain times and for as yet unknown reasons, these MRTC's are allowed to expand. This often results in an flare-up.

As a brief intro, I'm a Ph.D. involved in basic science research (on diabetes) and I've had MS for 3 years now. Last Monday, I went in for the initial screening for the Tovaxin study and I got the phone call today that my MRTC's are to some or all of the 6 epitopes so I have been accepted to the study. Now I'm waiting for the call to get the big blood draw done. I also go in for my first MRI next Wednesday.

Take care,
Mike


Top
 Profile  
 
 Post subject:
PostPosted: Wed Nov 29, 2006 3:12 pm 
Offline
Family Elder

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


Last edited by Lyon on Mon Jun 20, 2011 2:24 pm, edited 2 times in total.

Top
 Profile  
 
 Post subject:
PostPosted: Wed Nov 29, 2006 4:09 pm 
Offline
Family Elder
User avatar

Joined: Wed Nov 09, 2005 4:00 pm
Posts: 183
Yes, thank you Mike!


When I asked questions about MRTCs, it was to the nurse. After driving for almost 4 hours to get to the hospital for my first screening visit and after completing the numerous tests, a second Dr came in and asked if I had questions. By then, I was just too tired to ask all the questions I had about MRTCs (that had been unanswered by the nurse). Perphas he would have been able to give me more information than the nurse.


Thanks again for the info.


Top
 Profile  
 
 Post subject:
PostPosted: Wed Nov 29, 2006 8:13 pm 
Offline
Family Elder
User avatar

Joined: Fri Jun 25, 2004 3:00 pm
Posts: 270
Location: Near Chicago
Welcome Mike!

Thanks for explaining for us. Good luck in the trial, I hope you have great results.

_________________
Take care, Ewizabeth Previously Avonex, Rebif & Copaxone RRMS ~Tysabri, 31 infusions, ended 9/09. Starting Copaxone 12/09, waiting for Cladribine to be approved in 2010.


Top
 Profile  
 
Display posts from previous:  Sort by  
Post new topic Reply to topic  [ 92 posts ]  Go to page Previous  1, 2, 3, 4, 5, 6, 7  Next

All times are UTC - 8 hours [ DST ]


Related topics
 Topics   Author   Replies   Views   Last post 
There are no new unread posts for this topic. Tovaxin Update/Trial

Dunmann

3

1537

Fri Mar 10, 2006 1:57 pm

scoobyjude View the latest post

There are no new unread posts for this topic. Loobie's Tovaxin trial experience

Loobie

13

2610

Tue Nov 07, 2006 6:49 am

MISunshine View the latest post

There are no new unread posts for this topic. Tovaxin

bromley

0

1444

Wed Aug 10, 2005 5:06 am

bromley View the latest post

There are no new unread posts for this topic. Tovaxin

bromley

0

1136

Tue Mar 28, 2006 2:27 pm

bromley View the latest post

There are no new unread posts for this topic. Tovaxin

bromley

0

1254

Sat Apr 15, 2006 9:05 am

bromley 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:  


News News Site map Site map SitemapIndex SitemapIndex RSS Feed RSS Feed Channel list Channel list
Read hundreds of personal Multiple Sclerosis stories on Experience Project. Experience Project is an anonymous community where people connect through their life experiences, made by the same people who built This is MS. With over 30 million personal stories about every possible life experience, you can quickly find people like you!


Interesting: Secret Confessions | Dream Meanings | Ask Questions, Get Answers

Advertise on the premier multiple sclerosis forum