RESULTS WILL VARY!

A board to discuss Tcelna as a treatment for Multiple Sclerosis

Postby av8rgirl » Mon Apr 21, 2008 10:16 pm

Lyon wrote:
av8rgirl wrote: Now I want to know how you know I had a PM... 8O
:D I don't know the slightest thing about the PM itself but was assured that you wouldn't be left wondering.

Bob

Of course I was only teasing you! In addition to my bad memory, I have a whacky sense of humor...comes from flying upside down a lot!

Thanks for the heads up! It is appreciated.... :D
“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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Postby Sweetyhide » Tue Apr 22, 2008 3:56 am

Av8rgirl,

I must have missed your post about not producing the MRTC's.
Did they tell you that they will test again in 3 months? (or was it 4?)

Although I didn't have any severe relapses, I did have times where I actually wanted to try steroids because I felt so bad. I had swore I would never go back on them again after the last nightmare. But when we get sick it's hard not to do anything to get better.

I stuck it out in fear that it would alter some unknown balance and I would be delayed in the trial or worse. I was very lucky I wasn't that sick and was able to hang on. I don't think I even took tylenol during this trial. Not so unusual for me. I hate meds.
~Sweety
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Postby av8rgirl » Tue Apr 22, 2008 10:20 am

You didn't actually miss the post, I sort of posted it in a round about way...you know me, never the obvious! Yes, I will be retested in 90 days.

I don't particularly like doing steroids either, but when I have a relapse, I am really bad. As my neuro says, I am either 100% or zero. Right now I am headed towards zero. I hate it but the only way I can function is to go the steroid route and get it over with. Otherwise the exacerbation just lingers and I never get anything done. It definitely effects my QoL...and I need to work so...that's my life. I've tried not doing steroids to get through an exacerbation and it just doesn't work for me. We all have to do what we have to do...and this is my choice.
“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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Postby IHaveMS-com » Sun May 25, 2008 8:42 am

Hi to all,

It would be nice if someone in the IIb trail started a thread of participant's status 100 days after starting injections of the real stuff. Call it the 100 plus days club.
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 IHaveMS-com » Sun May 25, 2008 8:53 am

Hi to all,

It would be nice if someone in the IIb trail started a thread of participant's status 100 days after starting injections of the real stuff. Call it the 100 plus day club.

Another thought, so that the status of trial participants doesn't get lost, someone should start another thread. Call it questions and responses to the 100 plus days club.
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 Lyon » Sun May 25, 2008 10:58 am

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Last edited by Lyon on Sun May 08, 2011 5:34 pm, edited 1 time in total.
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Postby IHaveMS-com » Sun May 25, 2008 1:01 pm

Hi Bob,

In our case I'm guessing that my wife won't receive the first dose of the extension until some time in August.



Then you (your wife) will join the 100 plus days club around the feasts of Saint Nicholas,
December 6. Image
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 mrhodes40 » Sun May 25, 2008 1:19 pm

Tim,
I have not been offered an opportunity to bein the tovaxin trials: my edss is probaly too high even though my docs clinic was doing one.

Two things,
1 he told me only 10% of patients were testing out positive for MRTC's-but this was early on. What is that number known to be now?

2 if those of us like me want to know just for our own sake if we make MRTC's so we can wait for it, can we be tested??

Just curious; Copaxone was designed to looklike myelin and divert the immune system. It does not work that way, but I wonder if people who took it are more likely to have MRTC's

I would like to know because if it is true that I DO have them, this might cause me to make sure that decisions I make now are designed to take advantage of that later when it is out. For example, I have RA and can get Rituxan if I want it. That depletes b cells. If I added tovaxin to that later that might be a comprehensve approach.

But if on the other hand I do not have them at all, then I can forget about it and do whatever treatment seems good to me, possibly revimmune.

I'm really glad you are here sharing Tim with your inside scoop. Thanks!
marie
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Postby IHaveMS-com » Sun May 25, 2008 7:37 pm

Hi Marie

1 he told me only 10% of patients were testing out positive for MRTC's-but this was early on. What is that number known to be now?


Unless he is on the scientific advisory board, he would not have that information. If you think he is correct, you should ask him for the specific source of his information. Tell him you have heard figures different than his.

I have not heard any figures. Remember it is good news to be in the study and not have detectable MRTCs. In the redose study of the people that Zhang treated in the late 1990s, I believe 2 out of 12 were no longer producing MRTCs, and that was after a 6-year absence from treatment.

2 if those of us like me want to know just for our own sake if we make MRTC's so we can wait for it, can we be tested??


I don't think so. I don't know if the FDA would have to approve a test to detect MRTCs, but even if they didn't, Opexa is the only company with an analysis that determines MRTCs using 163 different peptide fragments over 3 of the major myelin proteins to identify an individual’s MRTC set. The group in Israel uses 2 of the major proteins, and I don't know how many peptides.

Just curious; Copaxone was designed to look like myelin and divert the immune system. It does not work that way, but I wonder if people who took it are more likely to have MRTC's


I don't even have a guess about that, but I will ask. If there is something to that idea, I will post what I find out, but it will only be someone's speculation, an educated speculation.

I would like to know because if it is true that I DO have them, this might cause me to make sure that decisions I make now are designed to take advantage of that later when it is out. For example, I have RA and can get Rituxan if I want it. That depletes B-cells. If I added Tovaxin to that later that might be a comprehensive approach.


The B-Cells that are causing RA are activated by a trigger different from MS. Rheumatoid Arthritis is also an autoimmune disease. I believe the destruction in RA occurs in the synovial tissue that lines the joints and produces synovial fluid. Synovial fluid nourishes and lubricates the cartilage and bone in the joint. I have not spent much time looking at RA other than knowing that it is an autoimmune disease.

Since Opexa already has a vaccine for RA that had a successful phase I/II trial in China, T-Cells must also play a role in RA. Since there is no blood brain barrier issue to affect the mechanics of the disease, RA may prove to be far more complex than MS. Lupus is another autoimmune disease where B-Cells are the primary problem.

Even though I think that B-Cells might play some role in MS, it appears that the T-Cells are the destructive force attacking myelin. The immune system is a system and the T-cell may be the primary problem, but it is possible that some other component of the immune system is also at work in MS. I hope that Tovaxin can control the T-Cells, eliminate the attacks, and if there is another cell evolved in MS, scientists will be able to more easily identify it.

But if on the other hand I do not have them at all, then I can forget about it and do whatever treatment seems good to me, possibly Revimmune.


If I were going to speculate on what treatment would be the best adjunct to Tovaxin, it would be Tysabri. I hate to say that, but the mechanism of Tysabri is such that it does not allow any of the T-Cells to cross the BBB, which would make them an easy target for Tovaxin. I don't know which treatment would come first or if they would be done at the same time.

My 99½ -year old Grandmother passed away this week. Both the Chicago Tribune and Daily Herald did an article on her, Mary Klein. I will miss her. I am heading home tomorrow and will probably check back in a month from now to see how the 100 plus days club thread is doing.
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 mrhodes40 » Mon May 26, 2008 6:48 am

I am sorry for your loss Tim. I wish you well!

Just for the record here:
My doctor, an MS research clinic director, was not commenting on people post treatment, he was commenting on how rarely people could be treated using this method. He told me he had less hope for it than he originally did because it was not a universal thing to produce MRTC's after all. He may have had a hard time finding patients to put in the trial because only 10% were testing out as having MRTC, and that may be the source of the comment.

B cells are present in MS as well. Rituxan wipes out all of them in an untargeted way so it matters not what the tissue target is. These kinds of approaches are very much less refined than tovaxin which is very nicely focused.

I see what you mean about only testing by the company because of the multiple peptides used. It is too bad we can't get that testing now so we can know at this point in time if we will be in the proportion of MSS patients that can use this approach. Darn!
blessings
Marie
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