TOVAXIN ROLE CALL

A board to discuss Tcelna as a treatment for Multiple Sclerosis
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Lyon
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TOVAXIN ROLE CALL

Post by Lyon »

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flipflopper
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Post by flipflopper »

I attempted to enter the Tovaxin phase IIb trial. I was negative the first time I tried. I tried again a second time a few days ago and I will post my results as soon as I get them. However, I’m pretty sure that I will be negative again.


I found out some new things that I wanted to post. Tim mentioned in his reply to Bob that about 50% of people who tried out for the trial tested positive. Apparently, that is not the case. I was told that most people are testing negative for MRTC’s. A lot of sites are wondering what is going on now and they will have a conference with Opexa shortly to ask some questions. At the site where I went, 3 people (including me) have been tested so far. We all tested negative. I was told that another site tested 30 people and only 3 tested positive for MRTC’s.


It seems like Opexa doesn’t want to disclose these number now because a lot less people would want to try out for the trial if they knew that the odds were not that great of testing positive for MRTC’s.


I’m sorry to be the bearer of bad news for those who will be trying out shortly for this trial.
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Post by Lyon »

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CureOrBust
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Post by CureOrBust »

It would seem logical that their chance of identifyng mrtc's would increase during times of a relapse? I am not part of the trial, however, I know I can induce a relapse under two very different conditions. (1) an infection (ie cold or flu type of thing) and (2) A flagyl pulse. I would be interested to know if I would test positive under both triggers, and if it would be for the same epitopes or whatever.
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Isolation of MRTC

Post by Guest »

Hey, I was accepted into the Tovaxin IIb study and they were able to isolate MRTC's with me on the first try. I'll be starting the treatment on January 10th. Will post an update after.
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ewizabeth
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Post by ewizabeth »

I'm here, but I don't get the first blood test until January 26th. I'll let you know 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.
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Re: Isolation of MRTC

Post by Lyon »

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Post by Lyon »

oo
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ewizabeth
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Post by ewizabeth »

Lyon wrote:Perhaps in the future they'll purposely instigate a relapse shortly before drawing blood for mrtc isolation?

Thanks for checking in Ewizabeth!
You're welcome Bob!
:)
I can't see them purposely instigating a relapse. Who knows what the next relapse will bring, and how complete the recovery will be, if at all.
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.
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Post by Lyon »

oo
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ewizabeth
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Post by ewizabeth »

Lyon wrote: I'm not convinced that someone could purposely cause a relapse at will and even if it is possible, who knows if it would really make the difference between isolating mrtcs and not?
I know that extreme stress can cause a relapse in me, and combine that with consuming plenty of junk food and it's a recipe for disaster. :roll:
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.
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CureOrBust
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Post by CureOrBust »

Lyon wrote:I'm not convinced that someone could purposely cause a relapse at will and even if it is possible...
After ten years, I KNOW that catching a cold or flu will trigger a relapse without fail after about 5-8 days. So just let me amongst a rooom full of snotty, sneezing kids, and you got yourself a bet! Now, I also know I can stop the relapse once it has started by using prednisone. The big problem with it is that I try to avoid starting too soon as I still have the infection, and want to give my body a chance to kill it off before hitting the immunosuppression.

As for the flagyl, the main reason I wonder about the difference with this type of "relapse", is that those on the ABX's attribute them to die off of CPn, not plain auto immune type action (ie MRTC's)
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Post by Lyon »

oo
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Post by Lyon »

oo
Last edited by Lyon on Sat May 14, 2011 9:54 am, edited 1 time in total.
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CureOrBust
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Post by CureOrBust »

Lyon wrote:These relapses that are brought on by something....are they more mild and shorter duration than a relapse that seems to start on it's own?
Before I started the ABX's, the ONLY trigger (from 10years experience) for a relapse has been a cold or flu. ie I have no memory of a relapse that "started on its own". So, there is nothing to compare it to in severity. And as for how long they go for, I have only once tried to let a relapse sort itself out. About 2 years ago I was diagnosed and started rebif. I caught a flu, relapsed, but wasnt sure (rebif gave me some 'relapse symptoms') and hoped the rebif would help. I just got worse and worse until I used some prednisone. I regret that, as I am still recovering from that relapse.

Now, comparing the relapses caused by an infection, with those caused by flagyl, I would say the flagyl normally causes milder relapses. But the last flagyl relapse was very soon after a flu relapse, and has left me with severe clonus in my knees, which is taking time to resolve (ps I only take 2-3 days of 75mg prednisone). So it doesnt feel all that mild right now.
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