TOVAXIN GUINEA PIGS PLEASE HELP!

A board to discuss Tcelna as a treatment for Multiple Sclerosis

Re: Tovaxin Guinea Pigs Please Help!

Postby NHE » Fri Sep 26, 2008 12:31 pm

TWG wrote: They still have $12.26 Million in the bank, how far this will take them I do not know.

During Opexa's recent conference call dated 9-22-08, which I encourage everyone to listen to, a representative stated that they have enough funding to continue operations through the beginning of next year and that they were seeking additional funding sources.

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Postby Ant148 » Fri Sep 26, 2008 2:42 pm

holy shit... i'm sorry to say, it turns out tovaxin really does suck ass. i got unblinded and despite getting worse, i was receiving tovaxin the whole time after all. it didn't prevent the recent relapse nor going from 0 lesions in the first mri to 22 in the last. i still wanted to stubbornly move ahead in the extension study but both my regular neurologist and my trial site neurologist, both put the kibosh on that idea. perhaps they're right -- it's just taking time for it to seep into my poor injured brain. i guess sometimes one gets attached and it's hard to let go. even when it's a mistake... :(
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Postby av8rgirl » Fri Sep 26, 2008 3:05 pm

Ant148 wrote:holy shit... i'm sorry to say, it turns out tovaxin really does suck ass. i got unblinded and despite getting worse, i was receiving tovaxin the whole time after all. it didn't prevent the recent relapse nor going from 0 lesions in the first mri to 22 in the last. i still wanted to stubbornly move ahead in the extension study but both my regular neurologist and my trial site neurologist, both put the kibosh on that idea. perhaps they're right -- it's just taking time for it to seep into my poor injured brain. i guess sometimes one gets attached and it's hard to let go. even when it's a mistake... :(


As they say, not everything works for everyone. Sorry, this is isn't the medication for you.

I know how you feel. I've been on several of the "approved" meds and so far nothing has worked for me so that's why I am in this trial.
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Postby pvns2005 » Fri Sep 26, 2008 3:59 pm

Ant148 wrote:holy shit... i'm sorry to say, it turns out tovaxin really does suck ass. i got unblinded and despite getting worse, i was receiving tovaxin the whole time after all. it didn't prevent the recent relapse nor going from 0 lesions in the first mri to 22 in the last. i still wanted to stubbornly move ahead in the extension study but both my regular neurologist and my trial site neurologist, both put the kibosh on that idea. perhaps they're right -- it's just taking time for it to seep into my poor injured brain. i guess sometimes one gets attached and it's hard to let go. even when it's a mistake... :(


Seems the people and myself who were on Tovaxin had gotten worse during the trial. I was off all MS meds for 5 years before the Tovaxin trial and had one small non enhancing lesion before I got my first injection. My MS was pretty stable then after the last MRI I had 7 active enhancing lesions and my disability had gotten worse. Plus I had 2 bad relapses after the third injection back to back.

Just speculating here but what's wrong with this picture? Does this trial smell a little fishy?
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Postby Ant148 » Fri Sep 26, 2008 6:56 pm

i'll just posit the obvious conclusion i feel might be on a lot of people's minds -- tovaxin doesn't simply do nothing but actually damages a person's brain/cns. i mean what else can i conclude after going from zero lesions to 22 and a bad relapse? i know it's simplistic to think that way but what else am i to think especially when i'm not the only one with that experience? i bet the crappy IIb results would practically back this up if they opened up individual results of each and every patient.
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Postby JanethePain » Sun Sep 28, 2008 7:24 am

Ant148 wrote: ... nor going from 0 lesions in the first mri ...


So how did you qualify for the trial?
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Postby JanethePain » Sun Sep 28, 2008 7:35 am

pvns2005 wrote: ... I was off all MS meds for 5 years before the Tovaxin trial ...

Let's see here--you were medication-free for five years before the trial start date. When did you actually start? When the parameters read "18 - 45" or when they were modified from "18 -55," thereby keeping the recruitment phase active for about fourteen additional months?

I'm especially interested WHEN you were officially diagnosed within the time-frame of the trial (no longer than five years from start date) AND yet managed to have enough experience with various medications to stop taking them... coincidentally, five years from the start date...

pvns2005 wrote: Just speculating here but what's wrong with this picture? Does this trial smell a little fishy?

Yeah buddy and it isn't coming from The Woodlands, TX.
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Postby av8rgirl » Sun Sep 28, 2008 8:16 am

JanethePain wrote:
Ant148 wrote: ... nor going from 0 lesions in the first mri ...


So how did you qualify for the trial?


I was wondering the same thing, and then thought CIS maybe? But considering I don't own a horse, didn't want to get put in the same category as Patrick and Sweety! LOL!
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Postby pvns2005 » Sun Sep 28, 2008 8:28 am

JanethePain wrote: Let's see here--you were medication-free for five years before the trial start date. When did you actually start? When the parameters read "18 - 45" or when they were modified from "18 -55," thereby keeping the recruitment phase active for about fourteen additional months?

I'm especially interested WHEN you were officially diagnosed within the time-frame of the trial (no longer than five years from start date) AND yet managed to have enough experience with various medications to stop taking them... coincidentally, five years from the start date...


I was diagnosed with MS 9 years before the trial began. I had been on all the CRAB's and failed. I was on a maintenance does of IV Solumedrol ever six months after I stopped the MS medications. I was 35 years old when I started the Tovaxin IIb trial. When I started the IIb trial the cut off date was having MS for ten years or less. I qualified for the trial by just a few months. I was one of the first people in the IIb trial to get there injections. I was dropped from the extension study two weeks before my first injections for "Safety Reasons".

JanethePain, I hope this answers your questions..

I have since been to Johns Hopkins and went through the HiCy (Revimmune) treatment in June 2008. This treatment has stopped all my enhancing lesions and relieved my MS fatigue.
Last edited by pvns2005 on Sun Sep 28, 2008 8:31 am, edited 1 time in total.
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Postby Ant148 » Sun Sep 28, 2008 9:41 pm

your questions remind of another quirk of my trial experience. i actually did not qualify for the trial initially. my mrtc's weren't apparent in the first checkup. so that means the 6 tysabri treatments i had right before the trial were remarkably effective. 0 lesions on the first mri and no mrtc's! of course, in the second checkup 30 days later, the mrtc's were in full effect and i was smack dab in this wretched trial. i guess the silver lining is that i have first hand knowledge that tysabri works like a charm. for me that is. not generalizing to anyone so don't start the incessant critique that dominates this forum.

oh and take it easy with the horses, ok? thanks :D
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Postby av8rgirl » Mon Sep 29, 2008 9:02 am

Ant148 wrote:your questions remind of another quirk of my trial experience. i actually did not qualify for the trial initially. my mrtc's weren't apparent in the first checkup. so that means the 6 tysabri treatments i had right before the trial were remarkably effective. 0 lesions on the first mri and no mrtc's! of course, in the second checkup 30 days later, the mrtc's were in full effect and i was smack dab in this wretched trial. i guess the silver lining is that i have first hand knowledge that tysabri works like a charm. for me that is. not generalizing to anyone so don't start the incessant critique that dominates this forum.

oh and take it easy with the horses, ok? thanks :D


I remember reading the exclusionary information and if memory serves, if you had been on Tysabri, you couldn't be in the trial. Someone correct me if I am wrong.

Maybe it was just a certain time frame prior to starting the trial. :?
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Postby Ant148 » Mon Sep 29, 2008 5:18 pm

they required a 30 or 60 day break from tysabri before they would check for mrtc's. don't remember which but that was the only rule.
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Postby av8rgirl » Tue Sep 30, 2008 10:13 am

I was unblinded today! I have been receiving drug! No MRI results. Just whether I was in drug or placebo group.

Yeah!
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Postby JanethePain » Tue Sep 30, 2008 12:43 pm

av8rgirl wrote:I was unblinded today! I have been receiving drug! No MRI results. Just whether I was in drug or placebo group.

Yeah!


Yippee! And you thought YOU would be the last to know! :lol:
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Postby Lars » Tue Sep 30, 2008 1:33 pm

Ant,
This is not intended to start a fight, trust me I don't have the energy or desire but if you had no lesions, no MRTC's and Tysabri was working so well why would you change course?????
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