This Is MS Multiple Sclerosis Community: Knowledge & Support

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.

NHE

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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“When everything seems to be going against you, remember that the airplane takes off against the wind, not with it.” - Henry Ford

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?

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.

So how did you qualify for the trial?

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Jane the Pain

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...


Yeah buddy and it isn't coming from The Woodlands, TX.

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Jane the Pain

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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“When everything seems to be going against you, remember that the airplane takes off against the wind, not with it.” - Henry Ford

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.

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

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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“When everything seems to be going against you, remember that the airplane takes off against the wind, not with it.” - Henry Ford

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.

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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“When everything seems to be going against you, remember that the airplane takes off against the wind, not with it.” - Henry Ford

Yippee! And you thought YOU would be the last to know!

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Jane the Pain

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?????
Lars