How do you feel Tovaxin users???

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How do you feel Tovaxin users???

Postby pvns2005 » Thu Apr 09, 2009 1:04 pm

It's been over a year since I was droped from the Tovaxin study due to safety concerns. So I went to Johns Hopkins to do HiCy and I am 9 months post treatment.

I am hear to ask everybody who is still in the Tovaxin study how are you feeling? Does Tovaxin seem to work? Anybody get any better? How do the MRIs look now?

Basically does it WORK??

Chris..
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Re: How do you feel Tovaxin users???

Postby JanethePain » Thu Apr 09, 2009 1:25 pm

pvns2005 wrote:It's been over a year since I was droped from the Tovaxin study due to safety concerns. So I went to Johns Hopkins to do HiCy and I am 9 months post treatment.

I am hear to ask everybody who is still in the Tovaxin study how are you feeling? Does Tovaxin seem to work? Anybody get any better? How do the MRIs look now?

Basically does it WORK??

Chris..


I seemed to do great during the trials. In fact, at my last visit that none of us knew was my last visit, when my neuro and I pored over first and most recent MRIs, he said, "The only thing better than this is a cure."

You'll find some links to post-cancellation reports somewhere on the menu floating around.

As for "feeling," well, I'd sure love to have a shot about now. But since I was "without" therapy for more than a year BEFORE the study got going and again between TERMS and OLTERMS, I'm not too panicked yet.

Today is supposed to be the big powwow with Cambria. Maybe we'll get some info soon.
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Postby Loobie » Thu Apr 09, 2009 2:41 pm

I think, for me anyway, I might have been better off injecting saline. I progressed like mad during the trial. I opted out after just over a half year on the real stuff because I couldn't just keep getting worse. Tysabri has seemed to stop the downhill slide for me, but who knows if that's exactly why I've slowed down. I think it was worthless.
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Postby Lyon » Thu Apr 09, 2009 4:40 pm

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Postby patrickm » Sat Apr 25, 2009 3:48 pm

Hi all.
I'm still fine. I was on vaccine and my symptoms have been stable for the last two years. Since March, I have been down in Houston dealing with helping my mom through pancreatic cancer treatment, so for once, my MS is the last thing on my mind. That's a novel feeling for me, but a horrible way to have it.

I'm still not taking anything. Was a conscious decision with my neuro last December with the proviso that I get checked every three and have a new MRI in June or so. I did not make my March appt because of mom's illness and will hopefully see him next month and reevaluate. My hope is that perhaps CDP323 might come online in the next few months for a Phase III. Who knows. I just know I'm doing alright and I hate all the alternatives right now.

I realize that my situation might change at any moment, but for now I am content to sit tight.

Haven't been around much but I will keep checking in periodically. Hang in there everybody.

Take care all,
patrick
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Postby Lyon » Sat Apr 25, 2009 4:19 pm

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Postby flipflopper » Thu May 07, 2009 2:12 pm

I apologize for not giving an update sooner. I had one relapse since the end of the trial (end of last August). That is about the average number of relapse per year that I get. This was the first time that my leg was affected (weakness and just a little bit of spasticity) I usually take about 6 months to recover from a relapse and I have never recovered fully but I still do a very good job at recovering. However, for my last relapse, I didn't recover as well as I usually do. My leg is still very weak.

I am still not on any medications. I wanted to go on Tysabri at the end of last September. I am unable to work for now (my level of fatigue is too high) so this means no health insurance. However, last October I saw this http://www.newswire.ca/en/releases/arch ... c3452.html (I live in Quebec) My doctor agreed that going on Tysabri was the best route to take for me (I have had ms for 10 years now and I have also been on Rebif and Copaxone for many years). But, at my last visit, he informed me that to get medical coverage for this drug (by the government) the requirements were a lot stricter than he had anticipated. He said that all the patients he had applied for had been rejected. We'll see if I am accepted.
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Postby Lyon » Thu May 07, 2009 5:00 pm

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Postby av8rgirl » Fri Aug 07, 2009 10:40 am

I have been ok since being released from the Phase IIb trial. I have had 3 relapses all treated with IVSM. I had an MRI last January that showed 1 new lesion in my brain. After much discussion with my neuro, and some research and thinking on my own, I decided that I would stay off any therapy.

Like you Patrick, I am also a bit preoccupied right now with helping my sister take care of my terminally ill mom. Sometimes you have to put yourself on the back burner and take care of other things.

I hope everyone else is doing ok.
“When everything seems to be going against you, remember that the airplane takes off against the wind, not with it.” - Henry Ford
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How I feel

Postby mj » Mon Aug 10, 2009 1:15 pm

I was a tovaxin study patient, was on the drug from the start of the double-blind study, and I am doing very well. I noticed a great response from treatment, EDSS went down by 2 and the post study MRI shows no sign of MS-perhaps a suggestion is all. My doc says I have an "unremarkable" MRI for MS. Currently I am not taking additional drugs, but will have another MRI in about 6 months to check.
Technically I guess I am CIS, but with positiveoligo bands. But I feel great, no symptoms.
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Postby Lyon » Mon Aug 10, 2009 1:23 pm

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