Tovaxin and Progessive MS?

A board to discuss Tcelna as a treatment for Multiple Sclerosis

Tovaxin and Progessive MS?

Postby Lars » Mon Apr 16, 2007 5:57 pm

Hi all,
Starting this trial path has made me wonder if anyone, in any stage of the trial has had or suspected they were in the "progressive ms" group. Were any of the initial phases open to progressive patients? What were the results etc.? I have long suspected I was in the progressive group. I have never had any remittance since my diagnosis (nearly 8 months), only slowly worsening symptoms. I have never been given a definative RRMS diagnosis. In the back of my mind it had a lot to do with my desire to be in the Tovaxin trial. I had read somewhere at some point that there was reason to believe Tovaxin would work "across the board". I did share my thoughts with my clinical Neuro, if it bothered her in any way she did not respond. I also know that RRMS is a trial requirement. Boy am I questioning my decision not to use a "handle" right now. As always, just trying to find someone who may have walked this path.
P.S. Gave my pint last week, MRI's this week.
Thanks,
Lars
Lars
Family Elder
 
Posts: 433
Joined: Wed Mar 21, 2007 4:00 pm
Location: Durango, Co

Advertisement

Re: Tovaxin and Progessive MS?

Postby Lyon » Tue Apr 17, 2007 1:02 pm

Lars wrote:I did share my thoughts with my clinical Neuro, if it bothered her in any way she did not respond.
Hi Lars,
You're more honest than I am! I wouldn't have said a word for fear they wouldn't let me into the trial!

I can't remember who said it so I can't testify to the value of the source but I also remember reading somewhere that it was suspected Tovaxin would work in all MS phases and I'll go on a limb and say that's also my personal belief.

Considering that current treatments don't work on the right mechanisms and don't even do that very effectively, I think we'll soon realize that it's nothing more than a myth that more advanced and more agressive MS is an entirely "different animal" from RRMS.

Everyone has to make the choice they are comfortable with but I think you're doing the right thing.

Hopefully Tim will respond because he knows a lot more about it than I do but here is something from the FAQ's on his webpage.

Bob

Q: Thanks for taking time to update us all on your progress with the ms vaccine. Do you know if they let SPMS'ers in the study and if so did they see the same results that you saw?

A: There are people with SPMS in my study. The phase IIb study starting early in 2006 will be limited to RRMS, but there will be other studies that are designed for SPMS and probably PPMS. Since the data reported at the International MS Meeting showed a 92% reduction in attacks and an improvement in disability, I assume this indicates that it works for SPMS.
Lyon
Family Elder
 
Posts: 6063
Joined: Wed May 03, 2006 3:00 pm

Postby Lars » Tue Apr 17, 2007 5:56 pm

Thanks Bob,
The good news is that my Neuros never totally seem to care what I think. It seems the RRMS diagnosis is an easier place to start for the Neuros in my life. I appreciate the honest moniker, but really I am just much to tired to beat around the bush. I have shared all of this with my clinical Neuro. I can do no more. Until someone changes my diagnosis, the RRMS assumption will more than likely be honored. I will take a look on Tims site.
Thanks again,
Lars
Lars
Family Elder
 
Posts: 433
Joined: Wed Mar 21, 2007 4:00 pm
Location: Durango, Co

Postby IHaveMS-com » Mon Apr 23, 2007 12:15 pm

Hi Lars,

The white blood cells (WBCs) that attack myelin are different in PPMS and RRMS. In RRMS the WBCs are CD-4, and PPMS the WBCs are CD-8. This fact would have been apparent to the people testing your blood for MRTCs.

One of the original patients in my study was diagnosed as SPMS, but her blood profile revealed that she was PPMS. She was allowed to stay in the study, but she was not part of the data. If it is determined at some point that you are PPMS, I assume you will continue to be treated. My guess is that you are not PPMS.
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.
User avatar
IHaveMS-com
Family Elder
 
Posts: 213
Joined: Tue Jun 07, 2005 3:00 pm

Postby Lyon » Mon Apr 23, 2007 12:59 pm

Hi Tim,
I want to understand what you are saying....both RRMS and SPMS are CD-4 driven and PPMS is CD-8 driven?

Next question....evidently the Tovaxin detection process detects CD-8's (PPMS) but is it thought that irridating these CD-8 mrtc's and reinjecting them might still provide favorable results?

Thanks,
Bob
Lyon
Family Elder
 
Posts: 6063
Joined: Wed May 03, 2006 3:00 pm

Postby IHaveMS-com » Mon Apr 23, 2007 6:55 pm

Hi Bob,

There is obviously a lot more to learn about the different forms of MS. Besides no longer having the remission phase of RRMS there may be some other mechanics at work with SPMS. The majority of research has been done trying to understand the hows and whys of RRMS. PPMS and PRMS (primary relapsing MS) seem to be very different than the other forms of MS.

I have focused my attention on RRMS and have not read much about the assumed mechanics of SPMS, PPMS, or PRMS. I probably should spend some time studying the other forms, because I seem to have had a fairly aggressive form of MS. I have the diagnosis of RRMS, but it was thought that I had possibly transitioned into SPMS almost immediately. I had several attacks in rapid succession with no apparent remission. My blood profile is mainly CD-4 WBCs but I did have some CD-8 WBCs.

When I was moved into the mid-dose group, my MRTCs dropped to zero. Because I have a line of WBCs that are associated with PPMS, it seems probable that Tovaxin will work for PPMS, but since it is quite different, you may need to do more than eliminate the MRTCs.

My study recruited both RRMS and SPMS. I don't know how many were of each type, but the 92% reduction in attacks was for all patients. This would indicate that Tovaxin must work for SPMS. Also if it is true that I had already transitioned into SPMS, that adds a little more credence to the hope that Tovaxin will work for SPMS.

Every answer generates 10 more questions. I have many unanswered questions. I hope that this study will answer some of them.

My brothers have updated my site http://ihavems.com/ or http://66.34.49.169/ with a section of 20+ FAQs on MRTCs. They also added a few new pictures to my timeline followed by this statement.
April 2006 You have probably realized from the last few entries that Tim is doing fine, and we don't have anything to report. We are going to stop adding anything to Tim's timeline. There are many people who are now enrolled in the Tovaxin study. It is their turn to tell us their stories. Some will have great success like Tim and post up the good news. Others may not fare as well. They may be in the placebo group, but we will never know. We hope the vast majority will stop having attacks and regain some of their lost function. We assume that we will probably never hear their stories. We will close Tim's timeline with a quote by Tiny Tim from A Christmas Carol. Our Dad uses this quote to end the annual Christmas letter every year.
And Tiny Tim adds a wiser corollary to his father's toast, God bless us every one!


I hope to read lots of interesting stories posted on the web, but for me, I will quote that great orator, Porky Pig, "Th-th-th-that's all folks!"
Last edited by IHaveMS-com on Tue Apr 24, 2007 8:14 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.
User avatar
IHaveMS-com
Family Elder
 
Posts: 213
Joined: Tue Jun 07, 2005 3:00 pm

Postby CureOrBust » Tue Apr 24, 2007 4:12 am

IHaveMS-com wrote:My blood profile is mainly CD-4 WBCs but I did have some CD-8 WBCs.
Is this something labs apart from Tovaxin trial centers can test for?
User avatar
CureOrBust
Family Elder
 
Posts: 2914
Joined: Wed Jul 27, 2005 3:00 pm
Location: Sydney, Australia

Postby Loobie » Tue Apr 24, 2007 4:34 am

I read those stats and I just have to start praying. My MS seems to really be at the tipping point where bad stuff is starting to happen. If I can only hang on until November, maybe I can get the drug.

I will tell you that my post about exercise and relapses has helped me enormously. I have backed off to light exercise (I actually quit when my body said enough; interesting concept for me :? ) and after only two days my feet feel better and my legs are not nearly as wobbly. In the words of Veruca Salt "I want Tovaxin and I want it now!".
User avatar
Loobie
Family Elder
 
Posts: 2196
Joined: Mon Sep 11, 2006 3:00 pm
Location: Dayton, Ohio USA

Postby connieb » Tue Apr 24, 2007 7:29 am

Thank you so much Tim-- the FAQ on MRTCs on the website is especially helpful and informative. Do you know why the researchers believe that they'll be able to isolate sufficient MRTCs to make a vaccine for 95% of the people with MS?
User avatar
connieb
Family Member
 
Posts: 93
Joined: Fri Oct 20, 2006 3:00 pm

Postby IHaveMS-com » Tue Apr 24, 2007 8:23 am

Hi To All,

I am told that the URL for my site is acting a little finicky. If you wish to visit the site and the http://ihavems.com/ does not work, you can use the IP address http://66.34.49.169/ My brother tell me that it is an AOL problem and if you are using Internet Explorer there is no problem.
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.
User avatar
IHaveMS-com
Family Elder
 
Posts: 213
Joined: Tue Jun 07, 2005 3:00 pm

Postby Lyon » Tue Apr 24, 2007 9:08 am

Hi Tim,

Your site worked fine for me last night and just now.

If you get a chance to take a look at your site....the last few pictures seemed they should be labeled 2007 instead of 2006.

I can't tell if some of your comments meant that you are finished with your webpage or finished with thisisms.

If you're finished with thisisms I want to say that although things got off to a bad start, I can't thank you enough for originally making Tovaxin visible to a lot of us when it wouldn't have been otherwise and for having the guts to come back and help make our entrance into the IIb a more educated decision.

I'm like Lew in that I just want to get this year of possible placebo over and done with so that she can get on the real thing.

Bob
Lyon
Family Elder
 
Posts: 6063
Joined: Wed May 03, 2006 3:00 pm

Postby IHaveMS-com » Tue Apr 24, 2007 10:13 am

Hi Bob,

The website will remain up, but I don't think anything new will be added to it. My story is old news. There are lots of new stories out there.

You know I hate to post. I will be around and you can always contact me. I hope to cut way back on posting. Like my 4-day rule, I have another rule -- 1 answer always generates 10 new questions.

If you get a chance to take a look at your site....the last few pictures seemed they should be labeled 2007 instead of 2006.


Oh darn, the 6 is just too close to the 7 on my keyboard. I will have it changed.
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.
User avatar
IHaveMS-com
Family Elder
 
Posts: 213
Joined: Tue Jun 07, 2005 3:00 pm

Postby Lyon » Tue Apr 24, 2007 1:14 pm

Hi Tim,
IHaveMS-com wrote:You know I hate to post.
Yes you've made it pretty obvious, which I've found a little surprising. If I do say so myself, thisisms is gaining kind of a cult following due to all the hot babes that hang around here, and with you being an eligible bachelor and all...... :wink:
Bob
Lyon
Family Elder
 
Posts: 6063
Joined: Wed May 03, 2006 3:00 pm

Postby Smilingface » Tue Apr 24, 2007 7:25 pm

CureOrBust wrote:
IHaveMS-com wrote:My blood profile is mainly CD-4 WBCs but I did have some CD-8 WBCs.
Is this something labs apart from Tovaxin trial centers can test for?


It must be expensive for a centrifuging lab to isolate WBCs. But if they could or would, can the different WBCs be used to confirm a RRMS vs PPMS diagnosis?

We need a hematology expert.....
User avatar
Smilingface
Family Elder
 
Posts: 113
Joined: Thu Apr 05, 2007 3:00 pm
Location: North Carolina

Postby Lyon » Tue Apr 24, 2007 8:08 pm

IHaveMS-com wrote: I have the diagnosis of RRMS, but it was thought that I had possibly transitioned into SPMS almost immediately. I had several attacks in rapid succession with no apparent remission. My blood profile is mainly CD-4 WBCs but I did have some CD-8 WBCs.
Smilingface, I wasn't comfortable with that CD-4 and CD-8 thing and in reading Tim's comment a little closer I notice that he isn't specifically stating that the amount of CD-4 or CD-8 cells is a determining factor to differentiate spms from rrms, although that is the way I too originally read it.

Tim probably won't be around for a couple of weeks and at that point we may find that he had some specific reason for mentioning CD-4's and CD-8's but in the meantime it seems important to remember that the definitions of the different phases of MS are nothing more than the arbitrary inventions of us humans and the disease process isn't obliged to provide us the means to document them as separate biochemically.

Bob
Lyon
Family Elder
 
Posts: 6063
Joined: Wed May 03, 2006 3:00 pm

Next

Return to Tcelna (Tovaxin)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service