TOVAXIN ROLE CALL

A board to discuss Tcelna as a treatment for Multiple Sclerosis

Postby ewizabeth » Thu Dec 28, 2006 7:55 pm

Welcome!

Can I call you JCML for short? I'm not the greatest typist. :) I'm glad to hear you'll be in the trial soon. I hope you get the real thing! I'll probably know sometime in Feb-Mar if I have the MRTC's.
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.
User avatar
ewizabeth
Family Elder
 
Posts: 270
Joined: Fri Jun 25, 2004 3:00 pm
Location: Near Chicago

Advertisement

Re: Tovaxin Role Call

Postby NHE » Fri Dec 29, 2006 1:59 am

CureOrBust wrote:I was previously mis-diagnosed with a condition abbreviated to CIDP (Chronic inflamatory demylinating polyneuropathy), which is basically where the peripheral nerves (ie not CNS) are attacked by the immune system. As such, I would guess the test for mrtc's would not be able to differentiate between CIDP & MS like an MRI could?

One of the autoantigens used by Opexa to separate out myelin reactive T cells is myelin oligodendrocyte glycoprotein, also known as MOG. I'm not 100% certain, but I believe that this protein is specific to oligodendrocytes as compared to schwann cells. As oligondendrocytes are only found in the central nervous system (CNS) and not the peripheral nervous system, the use of MOG should help to isolate T cells which are targeting myelin in the CNS.

NHE
User avatar
NHE
Volunteer Moderator
 
Posts: 3314
Joined: Sat Nov 20, 2004 4:00 pm

Postby hmtucker » Sat Dec 30, 2006 5:48 am

Hello all,

It's a GREAT idea to try and get all of the Tovaxin posts in one place! Maybe one of "the regulars" should put up a post on each of the other Tovaxin threads to come join us in this section of the forum.

As for the Tovaxin trial, I went in on Nov. 20 for the initial blood screening and received word that I was accepted for the trial on Nov. 29. On Dec. 6, I went in for the baseline MRI and on Dec. 11, I went in for the "big" blood draw. Feb. 24 is my next visit where I will get my first treatment, be it real or placebo.

As for MRTC isolation rate, according to the study coordinator here in Lexington as of Dec 11, of the 7 people who were screened, 6 tested positive for the MRTCs that Opexa is looking for.

Take care,
Mike
User avatar
hmtucker
Family Elder
 
Posts: 100
Joined: Tue Nov 28, 2006 4:00 pm
Location: Versailles, Kentucky

Postby Lyon » Sat Dec 30, 2006 6:26 am

oo
Last edited by Lyon on Sat May 14, 2011 10:59 am, edited 1 time in total.
Lyon
Family Elder
 
Posts: 6063
Joined: Wed May 03, 2006 3:00 pm

Postby ewizabeth » Sat Dec 30, 2006 9:01 am

hmtucker wrote:As for the Tovaxin trial, I went in on Nov. 20 for the initial blood screening and received word that I was accepted for the trial on Nov. 29. On Dec. 6, I went in for the baseline MRI and on Dec. 11, I went in for the "big" blood draw. Feb. 24 is my next visit where I will get my first treatment, be it real or placebo.

As for MRTC isolation rate, according to the study coordinator here in Lexington as of Dec 11, of the 7 people who were screened, 6 tested positive for the MRTCs that Opexa is looking for.


Mike,

That's great news. They moved very quickly after your initial blood screening. Maybe things will move faster for the rest of us too. I was thinking it might be months between doctor visits to really get things going. Also, that's good to hear about the MRTC isolation rate. Maybe with the strict rules about steroid use and such, they are getting more positive results now.
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.
User avatar
ewizabeth
Family Elder
 
Posts: 270
Joined: Fri Jun 25, 2004 3:00 pm
Location: Near Chicago

Postby flipflopper » Sat Dec 30, 2006 10:21 am

Lyon wrote:
Of course I can't testify to the accuracy of what I was told, only what the technician told me.........which puts us back to just about to ground zero! I don't know about you but I'm not sure what to believe now!


I also cannot testify to the accuracy of what I was told. I'm simply writting what I was told. It’s interesting to see that the site in Lexington tested 7 people and that 6 of them tested positive (thanks Mike for the info!)


Lyon wrote:Not to rush things but have you heard anything from your second mrtc isolation attempt yet? (fingers crossed!)


I haven’t heard anything yet. My appointment was on the 20th so it is probably too early to hear anything back. I was told that I needed to wait 10 business days. But, if I am negative again, I will have to find another explanation than simply drugs masking the MRTC’s that Opexa is looking for. The last time I had steroids for a relapse was more than a year ago. I have been off Copaxone for 6 months and what I did differently than the last time I was tested is that I stopped taking minocycline. Hence, the second time I was tested, I was not taking any drugs or even any supplements.
Last edited by flipflopper on Sat Dec 30, 2006 3:54 pm, edited 1 time in total.
User avatar
flipflopper
Family Elder
 
Posts: 183
Joined: Wed Nov 09, 2005 4:00 pm

Postby Loobie » Sat Dec 30, 2006 1:06 pm

I had my second round of shots on Thursday (12/28/06) and to tell you the truth, I think I'm getting the salt water. I have no basis in the rational world to feel that way, but I had hoped it would help me eyes, but they seem to be getting a bit worse. I may have to drop out if the decrease in vision keeps on.

I have heard that I could become unblinded and get the drug, but I'm not going to do that unless I'm really hurtin'. Seeing what this stuff does is really important to me whether I'm getting the drug or not. I don't want to go do a bunch of steroids anyway. They didn't really help me since my vision problems are usually triggered by heat. When I would get a bit hot, they would still 'go out' so I don't see the point.

I had absolutely 0 shot site reaction (which I know probably means bupkus), but I just wanna' know!
User avatar
Loobie
Family Elder
 
Posts: 2196
Joined: Mon Sep 11, 2006 3:00 pm
Location: Dayton, Ohio USA

Postby Lyon » Sat Dec 30, 2006 2:28 pm

oo
Last edited by Lyon on Sat May 14, 2011 10:59 am, edited 1 time in total.
Lyon
Family Elder
 
Posts: 6063
Joined: Wed May 03, 2006 3:00 pm

Postby gkalman » Sat Dec 30, 2006 5:50 pm

Just caught up reading through about two weeks of posts. Been very busy lately.

It is phenomenal that some of the questions that we were asking than are basically answered. It is great to have a little community corner. Thank you all.

One interesting observation. As flipflopper pointed out, some sites seem to have significant number of patients testing positive (6 of 7), while others have very low numbers.

Again, we don't have too many observations, but it seems above typical clustering. I.e., many more sites than one would expect have significantly more/less than average. Points to something amiss in the process or protocol.

Anyway, interesting.
User avatar
gkalman
Family Member
 
Posts: 51
Joined: Wed Jun 01, 2005 3:00 pm

Postby Lyon » Sat Dec 30, 2006 6:44 pm

oo
Last edited by Lyon on Sat May 14, 2011 10:59 am, edited 1 time in total.
Lyon
Family Elder
 
Posts: 6063
Joined: Wed May 03, 2006 3:00 pm

Re: Tovaxin Role Call

Postby NHE » Sun Dec 31, 2006 3:38 am

Loobie wrote:I had absolutely 0 shot site reaction (which I know probably means bupkus), but I just wanna' know!

Thanks to CureOrBust for posting this paper from 2004 of an earlier, small, uncontrolled, phase I trial of a T cell vaccine.

It mentions that of the 20 people in the study, only 55% experienced an injection site reaction and that this reaction usually didn't occur until after the second or third vaccination. Thus, an alternative explanation could be that you may be one of the people who don't experience an injection site reaction. In addition, the study only used two proteins, MBP and MOG, as opposed to the three that Opexa are using which also includes PLP. One of their primary findings was that the vaccination decreased the relapse rate and stabilized the EDSS with a small percentage improving.

NHE
User avatar
NHE
Volunteer Moderator
 
Posts: 3314
Joined: Sat Nov 20, 2004 4:00 pm

Postby gkalman » Sun Dec 31, 2006 7:53 am

Thank you Lyon.
May be the case of, “If the mountain doesn’t come to Mohamed, Mohamed will come to the mountain.”
It would likely be cheaper to buy everyone a round trip ticket to the mother ship in Texas or some other more easily accessible spot than deal with all the false negatives. (For my wife, it is a 2.5 hour drive to the nearest study site, so in reality, it is a loss of a day in any circumstance.)
Though, I guess, part of what they would like to prove is that it is implementable on a distributed basis.
(BTW Lyon, per your initial post, my wife is looking to test again.)
User avatar
gkalman
Family Member
 
Posts: 51
Joined: Wed Jun 01, 2005 3:00 pm

Postby ewizabeth » Sun Dec 31, 2006 8:16 am

Thank you Cure for finding and posting that. Thanks NHE for putting it here also.
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.
User avatar
ewizabeth
Family Elder
 
Posts: 270
Joined: Fri Jun 25, 2004 3:00 pm
Location: Near Chicago

Postby Lyon » Sun Dec 31, 2006 2:00 pm

oo
Last edited by Lyon on Sat May 14, 2011 11:00 am, edited 1 time in total.
Lyon
Family Elder
 
Posts: 6063
Joined: Wed May 03, 2006 3:00 pm

Postby flipflopper » Wed Jan 03, 2007 2:28 pm

Guess what? Guess what? I tested positive for MRTC's on my second try!! :D I got the call yesterday. Now, I just hope there will be no problem when they try to make a vaccine for me.


Gkalman, I wouldn't be surprised if your wife is told that someone tested positive after being negative the first time. I have a feeling that your wife and I might be going to the same place for this trial.
User avatar
flipflopper
Family Elder
 
Posts: 183
Joined: Wed Nov 09, 2005 4:00 pm

PreviousNext

Return to Tcelna (Tovaxin)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service