Tovaxin Trial Progress

connieb · Post by **connieb** » Mon Nov 27, 2006 3:38 pm

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?

carolew · Post by **carolew** » Mon Nov 27, 2006 5:02 pm

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

Lyon · Post by **Lyon** » Mon Nov 27, 2006 5:29 pm

ewizabeth · Post by **ewizabeth** » Mon Nov 27, 2006 7:27 pm

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.

sh8un · Post by **sh8un** » Mon Nov 27, 2006 11:37 pm

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

flipflopper · Post by **flipflopper** » Tue Nov 28, 2006 7:55 am

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!

flipflopper · Post by **flipflopper** » Tue Nov 28, 2006 9:13 am

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

Lyon · Post by **Lyon** » Tue Nov 28, 2006 12:35 pm

flipflopper · Post by **flipflopper** » Tue Nov 28, 2006 3:30 pm

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!

Loobie · Post by **Loobie** » Tue Nov 28, 2006 4:32 pm

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!

Lyon · Post by **Lyon** » Tue Nov 28, 2006 8:18 pm

hmtucker · Post by **hmtucker** » Wed Nov 29, 2006 1:59 pm

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

Lyon · Post by **Lyon** » Wed Nov 29, 2006 2:12 pm

flipflopper · Post by **flipflopper** » Wed Nov 29, 2006 3:09 pm

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.

ewizabeth · Post by **ewizabeth** » Wed Nov 29, 2006 7:13 pm

Welcome Mike!

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