Tovaxin Users

A board to discuss Tcelna as a treatment for Multiple Sclerosis

Tovaxin Users

Postby Arron » Mon May 28, 2007 11:23 pm

Member havingms has proposed we put together an informational thread for Tovaxin users. If you are on/have been on Tovaxin therapy, please consider answering the following questions in this thread for the benefit of others.

Thanks!


• When did you receive your first vaccination?

• What dose did you receive? How many millions of cells?

• What was your overall experience? Did you get better or worse?

• What side effects did you notice?
Disclaimer: Any information you find on this site should not be considered medical advice. All decisions should be made with the consent of your doctor, otherwise you are at your own risk.
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Postby IHaveMS-com » Tue May 29, 2007 6:07 am

When did you receive your first vaccination?


November 14, 2003

What dose did you receive?


This question only applies to someone in the I/II dose escalation study. I was first in the low-dose group receiving 7 to 9 million cells. On January 31, 2005, I was moved into the mid-dose group. Since I was in a study to show safety and the proper dose, I was moved into the mid-dose group after the mid-dose was shown to be safe. The mid-dose is what everyone in the IIb trial is currently receiving or will receive when they move into the extension study. The mid-dose is 30 to 45 million cells.

How many millions of cells?


The question of dose is only relevant to the I/II dose escalation study. Anyone who is currently receiving Tovaxin will be getting the mid-dose, with the exception of a few people (2 or 3) who are finishing up the high-dose part of the dose escalation study. The high-dose is up around 90 million cells.

What was your overall experience?


Excellent

Did you get better or worse?


My EDSS went down and I have regained many lost functions. I would add to this question a third response -- Did you get better, worse, or stayed the same.

What side effects did you notice?


None, and I never had an injection site reaction.
http://www.thisisms.com/ftopic-3409-0.html

MRTCs, Masking/Suppressing, and Some Thoughts
http://www.thisisms.com/ftopict-4868.html

I hope everyone has great disease reversal, but the bottom line is, if going forward, you are never worse than your worst day in the past, Tovaxin is working.

From what I can tell, the people in the extension study wake up each morning looking for what function they have regained today. I hope it works that way for everyone, but that is not what the hope for Tovaxin. Its purpose is to stop the attacks.

If when you wake up each day, you do not sense any regained function, you can be disappointed in your body's inability to restore itself. If on the other hand, you wake up and are feeling more disabled that your were at your worst point, then you can be disappointed in Tovaxin.

Some things to consider if your are in the Tovaxin trials:
1. It isn’t an attack unless it lasts for more than 4 days.
2. I will not consider my EDSS to have changed unless it stays changed for 2 or more consecutive assessments.
3. I will remind myself that the hope for Tovaxin is to stop the attacks. Any restoration of lost functions is up to my body.
4. I will not expect to sense any difference until at least 100 days after my first injection of the “real stuff”, and it is possible that it might take 4 treatments plus 10 days for my immunity to get up to a sufficient level to fend off attacks. http://www.thisisms.com/ftopict-5631.html
5. If I get some lost function back and I lose it again, I won’t think that I am having an attack but rather, that the body needs to do some more restoration to the nerves that control that function. But, if I get back some lost function and that restoration lasts for more than 8 weeks without interruption, it is for real, and in that case, if you lose the regained function after 8 continuous weeks of having it, discuss that with your neurologist.
6. There may be a point during the 100 days that you sense things are starting to get better. Use the day before you get that feeling as your baseline. No matter what ups and downs you encounter going forward, if you don't drop below your baseline, Tovaxin is working.
7. This is a patient-specific vaccine and there are a lot of other patient-specific rules. And most important of all, results will vary
http://www.thisisms.com/ftopict-4133.html
Last edited by IHaveMS-com on Tue Jun 10, 2008 10:54 am, edited 4 times 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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Re: Tovaxin Users

Postby RS-Girl » Tue May 29, 2007 7:37 am

• When did you receive your first vaccination?
5/25/07

• What dose did you receive? How many millions of cells?
I know that it was 2 injections, one in each arm. I believe it was 1cc per arm, but don't hold me to it, they were very slim with the details.

• What was your overall experience? Did you get better or worse?
I have been diagnosed with clinically isolated MS. My one and only flare was last summer and I have not had any new symptoms since then. Since the first injection, there is no noticeable difference than before I had the shot.

• What side effects did you notice?
None so far.
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Postby Loobie » Tue May 29, 2007 8:35 am

First injection - 11/27/06

Dose and cell count - I am unsure about that. I also received one injection in each arm

Overall experience - Have had some worsening of symptoms since the beginning of the trial but neuro. thinks I was in a relapse when we started based on my feedback ex post facto. Feeling pretty stable right now, but have lost lots of endurance capacity and coordination from my most recent relapse.

Side effects - None at all. No inj. site reaction and no reaction to the injections.

All Phase IIb participants could be in the control or the drug group. I have had my last injection until the extension starts.
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Postby Sweetyhide » Tue May 29, 2007 10:29 am

When did you receive your first vaccination?

01-30-07

What was your overall experience? Did you get better or worse?

I got worse, then between shot 2 and 3 I noticed small improvements and more each week.

What side effects did you notice?

None at all.
~Sweety
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Greetings to the Tovaxin group.

Postby havingms » Tue May 29, 2007 1:03 pm

• When did you receive your first vaccination?
October 2005

• What dose did you receive? How many millions of cells?
Appx 90million

• What was your overall experience? Did you get better or worse?

I gave the first blood bag in May of 2005 and received the first vaccination in the fall of 2005. I received the highest dose, about 90 million cells. The following month was close to amazing. I felt like my old self. Running up stairs 2 at a time and walking about my neighborhood and cycling too. I was so excited about the whole thing. By the holidays though, I had a mysterious decline in energy and something that felt like an exacerbation but not exactly. My symptoms were increasing again. At the end of the first year (fall 2006) I had declined quite a bit. In hopes of some relief I did one round of steroids in December 2006, and again a brief improvement was followed by extreme numbness of my feet and legs that persisted for several months. The research doctor could offer no explanation other that the Tovaxin was not shown to be helping me and that maybe I had entered the secondary progressive stage of my disease. I am currently experiencing symptoms without a break, and am quite limited in the mobility of my legs and quickly exhausted. Also very heat sensitive. Above 65F I stay home until it cools down.

The most interesting part of the story is that I had no MRTCs at the mid point of the study year and that extended for 10-12 months. So, from that point of view the vaccine did what it was supposed to do. It just didn’t help me for some unknown reason.

Unfortunately, my participation in the Tovaxin study was followed by a worsening of my condition and a gradual but continuous increase of my EDSS rating from a 2.5 (when I started) to a 7.

• What side effects did you notice?

The main one, is that overall, I have gotten a lot worse. I also did have injection site reactions. They got more and more intense after each consecutive shot. They included redness, swelling (like there was an egg under the surface of my skin/muscels) and changes in the surface of my skin, (reminded me of chiken skin). The site reaction area increased from the size of a quarter (1st shot) to the size of an orange/banana (4th shot). The reactions would dissapear within a week or so.

Now I am in the re-vaccination phase and will receive 30-45 million pretty soon. I hope that it will make a difference.
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Postby Loobie » Tue May 29, 2007 1:06 pm

HavingMS,

I hope so too!!
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Re: Greetings to the Tovaxin group.

Postby Lyon » Tue May 29, 2007 6:32 pm

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Last edited by Lyon on Tue Jun 21, 2011 2:47 pm, edited 1 time in total.
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Postby havingms » Tue May 29, 2007 7:28 pm

Dear Bob,

I am absolutly sure. Even though the cells are your own, their purpose is to cause an immune response so your immune system will begin to recognize the MRTCs as the culprits and eliminate them. I think thats why its called a vaccine.

The dose I received was high and I believe it might have been too much for my system. Although that might be debateble, I definitly had very strong injection site reactions, especially during shots 3 & 4.

This whole time I have felt that something has been amiss. While all testimonials I have read seem to be positive or at least neutral. I have wondered why this has not worked with my body.

Since the beginning (and before) of my participation in the study my white blood cell count has been below normal. It has ranged from 3.7 at the beginning (before the vaccine) all the way down to 2.9 during the vaccination period. I suspect that there is a long term pathogen such as CPn, Lyme or something else.

It is possible that there are other cells responsible for the distruction of the CNS such as B-cells. Also, the first vaccine covered and identified 6 or so peptides which probably did not address all the MRTCs. Of course I am just speculating.

All I know for sure is that I went from being able to walk the 500 yards easily to not being able to walk without a cane and the help of walls. Maybe it is a coincidence and has nothing to do with te vaccine. I hope I find out soon.
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Postby Lyon » Tue May 29, 2007 7:50 pm

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Postby havingms » Tue May 29, 2007 9:38 pm

Hi Bob.
Yes that is correct. This phase is called the re-treatment phase or the extension of the IIa study.
There were no placebos in this study. I have been receiving the real thing from the start.
Take care.
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Postby Lyon » Wed May 30, 2007 12:25 pm

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Last edited by Lyon on Tue Jun 21, 2011 2:48 pm, edited 1 time in total.
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Postby Lyon » Thu May 31, 2007 10:16 am

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Re: Tovaxin Users

Postby JanethePain » Thu Jun 14, 2007 8:26 am

Arron wrote:Member havingms has proposed we put together an informational thread for Tovaxin users. If you are on/have been on Tovaxin therapy, please consider answering the following questions in this thread for the benefit of others.

Thanks!


• When did you receive your first vaccination?

• What dose did you receive? How many millions of cells?

• What was your overall experience? Did you get better or worse?

• What side effects did you notice?


Hi all--

Okay, Tim just linked me here via e-mail... I'll just take the topics as they roll down the menu and hope I don't mess 'em up too much! Here goes:

First vaccination: May 2, 2007
I have no idea about the dosage... since I'm in trials, is this info even available to me?
I saw subtle improvement within 48 hours after those first jabs that just got "really" better as time went on.
No side effects.
Jane the Pain
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Postby IHaveMS-com » Thu Jun 14, 2007 9:16 am

Hi Jane,

It would be good if you posted the same improvements that you posted on the other site. That would give people the opportunity to read about the specific improvements you have had and possibly ask you some questions.

Bob, I think you should do the same thing on this thread. My brothers are threatening to hide my laptop.

I assume a lot of people watch the postings here, and some did not fit the protocol for the IIb trial. I will paste in here the same thing that I mentioned on the other site.

If you would like to see the protocol changed for the phase III study, you might look at the protocols that were used for the CRAB drugs and other approved MS drugs. If the age or EDSS span was greater for any of those drugs, present that information to the neurologist at the study site and ask him/her to send this information on to Opexa for their consideration. Please, please, please, won't make anything change, but supportive information might.
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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