Tovaxin Users - Where are You?

A board to discuss Tcelna as a treatment for Multiple Sclerosis

Tovaxin Users - Where are You?

Postby MaggieMae » Wed Aug 29, 2007 5:31 am

No one has written on this page for over two weeks. I check it out everyday to see how the Tovaxin users are doing. How is the trial going? Does anyone know anything new?
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Re: Tovaxin Users - Where are You?

Postby JanethePain » Wed Aug 29, 2007 7:22 am

MaggieMae wrote:No one has written on this page for over two weeks. I check it out everyday to see how the Tovaxin users are doing. How is the trial going? Does anyone know anything new?


Hiya, Maggie--I check here a lot, too, and figure "the gang" is winding up summer vacations and kid obligations before settling (collapsing?) into the back-to-school routine. And because the heat wave that pummeled southwestern Ohio has also brought us a severe drought, I've been ready to hide in a cave and stay there until October--from what I've read on other boards, this year's heat wave has crushed the life out of most MSers. UGH.

As for me, I'm in the "long space" between vaccinations.

And still struggling with that flare that started in mid-June. This one has been a doozy--in fact, worse than all other flares since I started tracking them. But if it behaves like a normal (?!?!?!) flare , it ought to subside in another two-three weeks and I might just start feeling like a human again. Might.

But whether or not this subsides substantially, I WILL feel better when it gets cooler--the few breaks in our heat wave proved that I DO have the improvement in fatigue level.

I just wish we'd have a big bad FROST tomorrow!

But yeah, I'm wondering where the other "usual suspects" are, too!
Jane the Pain
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Re: Tovaxin Users - Where are You?

Postby hmtucker » Wed Aug 29, 2007 9:05 am

MaggieMae wrote:No one has written on this page for over two weeks. I check it out everyday to see how the Tovaxin users are doing. How is the trial going? Does anyone know anything new?


Howdy,

Like you I check the board regularly but it has been very quiet lately. I go in for my 5th and final vaccination on September 6. We've been VERY busy finishing up our new log house. We've been the general contractors for the entire project and the only contractors for the last 4 or 5 months of construction. After a LOT of sweat equity, I'm happy to say that about 3 weeks ago we received our "move in" permit and moved our stuff in. We still have several things that we need to do but we're in!!!!!!!

Although we only moved about 20 miles, our original plan was to use a moving company for all of the big stuff. Even though the 95° heat that we've been having has not always been nice to me, things have been very stable for me so we decided to move the big stuff ourselves. I'm certainly glad it's over but we got it done! I'm convinced that although I have some deficits that I'll probably always have to deal with, I'm back in the phase of the more I do the more I can do.

Take care,
Mike
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Postby Loobie » Wed Aug 29, 2007 4:12 pm

All quiet on my front as well. As Jane said, this SW Ohio heatwave has me hiding inside alot. Since I don't do anything but another MRI until I start the extension (come on real Tovaxin!) I don't really have any "Tovaxin specific" stuff to post. I've just been posting in general discussion and lifestyle (is that right?) for a while. I continue my slow downward slide and even got told by me neuro that they think I'm on the fence between RR and SP. Not that that really matters since I can't do anything about it, but it still was a bit rattling. I got over it quick and am waiting very impatiently for Nov. 28th.
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Postby Lyon » Wed Aug 29, 2007 4:36 pm

Ditto here Lou. The lull is eerie!
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Postby flipflopper » Wed Aug 29, 2007 5:34 pm

I don't have much to report either. I had 4 vaccines so far. My last one will be in October. I still have no improvements or worsening of my symptoms or of my EDSS. I never had any side effects or injection site reactions after my vaccines except for the 4th one where a tiny area at the injection site stayed red for 2 days. Essentially, nothing has changed (which I know can be good if you have ms) and I am still really struggling with my worst symptom; fatigue.
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Postby MaggieMae » Thu Aug 30, 2007 6:13 am

I'm glad to hear that I'm not the only one reading this site daily and wondering what is happening with everyone.

The heat has definately been brutal this summer. My husband (who is SPMS for about 12 years and has had MS for 33 years) is having a problem he hasn't had since he was first diagnosed. He is having pain in his right arm that at times extends past his shoulder blade. This scares me because even though he can only walk short distances with assistance, this is new. Yesterday he called his neuro who put him on a three day very high dosage of steroids. Besides Betaseron since 1994, he was on Methatrexate (sp?) for five years. His neuro took him off last year. I have read that in studies it was found that Methatrexate helps with upper body symptoms. It makes me wonder if the Methatrexate did help his upper body and now that he is off - well..

His neuro said that at his next appointment he would like to discuss starting him on Tysabri. I had been hoping that we could wait until Tovaxin was on the market (which I've read will probably not be until 2011), but my husband doesn't want to wait that long. He is tired of waiting. And this arm thing has him worried.
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Postby Lyon » Mon Sep 03, 2007 6:44 pm

MaggieMae wrote:His neuro said that at his next appointment he would like to discuss starting him on Tysabri. I had been hoping that we could wait until Tovaxin was on the market (which I've read will probably not be until 2011), but my husband doesn't want to wait that long. He is tired of waiting. And this arm thing has him worried.
Hi MaggieMae,
I don't know if you are familiar with Ewizabeth's situation, but she wasn't able to get into the Tovaxin trial and went on Tysabri a while ago.

Last I knew things were going well for her and I don't think she regrets her decision. At this point it's all about buying time by holding off disability as well as you can for (hopefully) the next few years.
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Postby Lars » Tue Sep 04, 2007 10:28 am

Hi All,
I'm glad I'm not the only one that has notice the strange silence of late. I started thinking that my own fears and questions about Tovaxin may be common to everyone. We are all well into this phase and I wonder if the lack of a major "Tim" story has everyone wondering and retreating until some bombshell news is posted. I still think Tims advice is accurate, we shouldn't expect a miracle. For me there has been no significant improvement, but there has also been no significant worsening. I think that is all we should expect.
Third injections Aug. 30. All routine. Unlike injections #1 and #2, I did not experience any flu-like symptoms after this injection.
Be Well,
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Postby chrishasms » Tue Sep 04, 2007 10:58 am

I think the fact you have shown stabilization is a good sign. I still believe the reason Tim has had the level of recovery is because he does the work to see it. The younger you are the less work you need to do I'm sure. Unfortunately, I'm pretty sure someone who is 50 would need to rehab 5 times harder to recover lost mobilities than someone who is 30.
If you have stopped progressing you have won one of the fights. Until we figure out how to repair Myelin and Nerve cells the battle isn't over!
But boy....just think...no more progression!!! Heaven on earth!!!
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Postby sh8un » Tue Sep 04, 2007 12:48 pm

Ok...
I found this on aug 23...this is not all of it...there is the usual cover your butt things that they also write afterwards...
--------------------------------------------------------------------------------



August 23, 2007 07:00 AM Eastern Daylight Time
Opexa to Present Proprietary T-Cell Technology at Vaccine Conference on August 24, 2007
THE WOODLANDS, Texas--(BUSINESS WIRE)--Opexa Therapeutics, Inc. (NASDAQ: OPXA), a company involved in the development and commercialization of cell therapies, today announced that Jim Williams, Ph.D., the Company’s chief operating officer, research & development, will present at the Cambridge Healthtech Institute’s Targeted Immunotherapeutics & Vaccines Summit on August 24, 2007 at 8:35 a.m. EDT. Dr. Williams’ presentation, “Paving the Way for Autologous Cell Therapy for Autoimmunity,” will focus on Opexa’s unique technology platform, which uses attenuated pathogenic T-cells, in the development of patient-specific immunotherapies for the treatment of autoimmune diseases amenable to T-cell based therapies. These diseases include multiple sclerosis, rheumatoid arthritis and Type 1 diabetes.

Slides of Dr. Williams’ presentation will be posted to the Company’s web site, www.opexatherapeutics.com shortly after the conclusion of his presentation.

The conference is being held August 21-24, 2007 at the Boston Marriott Cambridge Hotel in Cambridge, Mass.

About T-cell Vaccination

For a T-cell vaccine to be effective, it should be able to induce T-cell cytotoxic and/or regulatory immune responses against the pathogenic T-cells. Studies of T-cell vaccine have indicated that T-cell vaccination with peripheral blood-derived autologous myelin-peptide selected T-cells in multiple sclerosis patients resulted in the in vivo induction of CD8+ cytotoxic T-cells and CD4+CD25+FoxP3 Tregs specific for T-cell vaccine. The induction of anti-idiotypic cytotoxic CD8+ effector T-cells and anti-ergotypic CD4+CD25+FoxP3 positive Tregs is believed to provide a therapeutically effective dual mechanism of protection to patients treated with Tovaxin. The observed regulatory immune responses have been shown to collectively correlate with clinical improvement in treated patients. Tovaxin is currently in a Phase IIb clinical trial. Patients treated in Opexa’s Phase I/II open-label studies have experienced an approximately 90% average reduction in annualized relapse rate, minimal side effects and observed improvement in average EDSS scores.


However, I have not been able to find the presentation. It's not up on the website yet. Kind of scary. I have not looked too hard...been really busy at work. I am sure one of you will find it.
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Postby Lyon » Tue Sep 04, 2007 4:45 pm

sh8un wrote: However, I have not been able to find the presentation. It's not up on the website yet. Kind of scary. I have not looked too hard...been really busy at work. I am sure one of you will find it.
Hi sh8un,
Thanks for posting that information and link, I hadn't heard of it.

I couldn't find the presentation posted on the Opexa website either but company websites are slow to change.
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Postby Loobie » Wed Sep 05, 2007 4:28 am

I like what I'm reading there. I don't understand 90% of it, but the meat of it is 90% relapse reduction and EDSS improvement so it sounds ok to me. I'm just sliding so fast I really hope I can hang until the end of Nov. My big thing is work. I can hang until then regardless, but my legs are just getting weaker every day and if I have to stop or reduce work, my family is going to be in a pickle $ wise.

The biggest thing about all this that scares me is that I'm getting my hopes too high and could potentially be headed for the big wall if I find out I've really been getting the drug. Oh well, what can I do but wait?
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Postby IHaveMS-com » Wed Sep 05, 2007 7:14 pm

Hi MaggieMae,

At this point there is not much for people to report. Those that feel neither better nor worse have nothing to say. Those that feel better are either out doing things or don't want to say anything for fear of jinxing themselves. Those that have had an attack or think they are doing worse probably have posted that, but maybe not.

I had treatment number 16 last Friday, and still no injection site reaction.

The health concerns with Tysabri are real, but because of the problems it had when it was first released, patients are monitored closely. For someone whose MS is rapidly progressing, I think Tysabri is a reasonable choice. I hope that Tovaxin will be approved in 2010, but your husband should be aggressively treating his MS and not be waiting for Tovaxin's approval.

If you are looking for another clinical trial, Rituximab is a therapeutic antibody that selectively targets and depletes a subset of immune cells called B-cells by targeting a specific protein on their surface. It is a monoclonal antibody like Tysabri, but I don't think it has quite the health risks.

The lull is eerie!


Remember, the hope for Tovaxin is no more attacks, so no news is good news.

I couldn't find the presentation posted on the Opexa website either but company websites are slow to change.


Go to research, then scroll down to the bottom and you will see Conference Presentations. This is the link to what you would get from the site. On page 16 you will see the progression of the T-Cell Vaccine.
http://www.opexatherapeutics.com/OTI_Pa ... 4.2007.pdf

The biggest thing about all this that scares me is that I'm getting my hopes too high and could potentially be headed for the big wall if I find out I've really been getting the drug.


I asked about if and when trial participants will be able to learn if they were on placebo or Tovaxin. The answer I got is that you can ask what you were getting when the trial(s) are completed and the data has been sealed, as in final analysis has been done and results have been published. That will probably be in 2012 unless the FDA requires a phase IV. By then, the question will only be asked out of curousity.

We are all well into this phase and I wonder if the lack of a major "Tim" story has everyone wondering and retreating until some bombshell news is posted. I still think Tims advice is accurate, we shouldn't expect a miracle.


Suggested reading -- my first post in the thread "results will vary"
http://www.thisisms.com/ftopic-4133-0.html Everyone's assignment is to go back and read or reread that post. I am going back into my phone booth until everyone has completed their assignment.
Last edited by IHaveMS-com on Thu Sep 06, 2007 7:51 am, edited 1 time in total.
Best regards, Tim

In 2001, my family helped fund the startup of Opexa. My father served on the Board of Directors of PharmaFrontiers, now Opexa Therapeutics, until the company completed a successful 23-million dollar financing round.
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Postby Lars » Thu Sep 06, 2007 7:16 am

Tim,
I think you have taken a portion of my post and used it as a sound bite. I think before you head to the phone booth you may want to re-read my post in its entirety.
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