This Is MS Multiple Sclerosis Community: Knowledge & Support

Mike,

Welcome to the board. Your information on MRTC's was just what the Dr. ordered. We have been looking for an answer that made sense on that one for a while. Thank you for explaining it so concisely.

Lew

Hi Mike,
Thank you for the info. I am glad that we have a researcher among us even though I am sure that you, just like the rest of us, don't want to be here. It's a great site and all but...
What you said makes sense. It's scary though because I wonder how many MSers can not make the MRTC's that they are looking for. I don't really get the whole trivalent/epitope thing. I'll will have to look into that.
Nice to have you here again,
NN

Thanks for all of the welcome messages folks! I'm mostly a lurker here but I'll try and keep you posted on how things are going for me in the Tovaxin study. It looks like I will go in for the big blood draw next Thursday.

Take care,
Mike

00

Bob,

Thanks for the info. I get my second set of shots on the 28th of Dec. The part I like was the part where they talk of unblinding a patient who may be relapsing. That is heartening to me since my disease laid low for about 4 years, but now seems to be kicking in; right when I start the trial! I have often wondered if I would divulge how bad I was doing if I thought it would sabotage the study, and now maybe I will if it comes to that. Thanks for the update.

Lew

Thanks for the clarification Bob. BTW, my next appt has been moved to end of January, because of the Nasonex steroid inhaler I was taking.

I would have gone the week before that, but we'll be on vacation....

So.... a bit of a delay for me, but still on track.

I'm hoping that for the extra five weeks without Copaxone I'll have more of the MRTC's for manufacturing the vaccine in case I get the real thing.

_________________
Take care, Ewizabeth Previously Avonex, Rebif & Copaxone RRMS ~Tysabri, 31 infusions, ended 9/09. Starting Copaxone 12/09, waiting for Cladribine to be approved in 2010.

00

00

The big delay happenned to me too. After my first blood draw it was determined that the lab didn't meet all the protocol and I had to give again. After the big bag that they take initially, they will take 18 test tubes each subsequent visit to make more. I felt like a vampire victim after the last one since I gave the 18 tubes and then had my MRI so they had to stick the other arm for the contrast. Good think I don't mind needles!

00

The study coordinator here in Lexington, KY indicated that Opexa was having some delays with the company that is doing the big blood draw. He also indicated that things have been getting better.

I went in for my screening on Nov. 20, got word that I was accepted in the study on Nov. 29, went for the first MRI on Dec. 6 and will have the big blood draw on Dec. 11. All in all, that seems pretty reasonable especially considering that the Thanksgiving Holiday was in the middle of the initial MRTC test.

Take care,
Mike

I believe mine started in Mid-August. I, too, have heard that the protocol related delays are getting worked out. When I say started, I mean being asked if I want to participate and all that. I had just gotten a routine MRI. The MRI was actually what started it all. My neuro. was leaning towards Devic's for me since I had eye, bladder and bowel and not much more that wasn't more than a nuisance and no brain lesions. The MRI showed I had seven new lesions on my brain, so since I had been taken off of Avonex because of the Devic's suspicion and had some recent progression, I was a good candidate.

00

ewizabeth,
Good luck with your course. If you are in the same office my wife used to be in (North Shore), you are very lucky. They really try to treat their patients very well. Unfortunately we moved, and what used to be a fifteen minute trip for my wife is now a two and a half hour trip each way to an office where the care is OK, but not what it was back in Chicago.

Lyon,
I do think that Tim has been more transparent lately, and is slowly earning back some trustworthiness he completely lost when he made himself a Tovaxin poster-child for so long without divulging his financial and personal interests in the drug. I never looked into whether Opexa is a public entity. If it is, his actions seem criminal and one day the SEC may catch up with him (I really don't wish that upon him). In any case, the actions were deceitful and his later disclosures were very overdue. But, as you say, though he still often comes through looking like a huge Opexa commercial, his information is very useful and helpful and I am very thankful for that. I hope his intentions are pure. (We are all human and make mistakes and hope he learns from his.)
Tovaxin, regardless of any surrounding circumstances, is a very novel idea in the arena of medications out there. And Tim's efforts at raising everyone's attention may be positive overall.

My wife decided to try to get into this study on its merits regardless of the issues above. To me that is a statement about the balance of Tovaxin's promise, Tim's evangelization, and Tim coming through looking shady in not being transparent especially in earlier stages of this saga.

Anyway, I have a few questions for this group. Does anyone know how many peptide sequences there are? How prevalent are the six that they are looking for? Are they looking for someone to test positive to just one sequence or more? I guess what I am asking for, what are the chances of someone not having the MRTCs necessary for the study.

In the office where my wife had blood drawn for this test, they said she is the third to get tested there and the first two were negative. I.e., at least anecdotally from this site (sorry flipflopper) and info from the office, it seems more likely than not to test negative. Is that true?

It also seems like a recent flare-up improves your chances of having the necessary MRTCs. Is that true or just another observation made on too little data?

BTW, she was also told they will retest the first two after 30 days if the patients wished.

Thanks Gkalman. They are wonderful there, and I feel lucky to be a patient. It would be just as close for me to go to Rush/Presbyterian in Chicago, but the Northbrook clinic is the best, and I've been a patient there for nearly four years.



As to Tim, how many people do you know that are gutsy enough to participate in a phase I clinical trial? So he comes from money. So his Dad was an investor. The kid had an EDSS of what, 5.5? He shared his experience on the internet. He doesn't owe anybody his personal details. He took a big risk in the trial and shared his story. To suggest that he did something criminal is ludicrous. Maybe he's shy about his family's money. Some rich kids are. Give him a break. Be glad that there are people heroic enough to participate in trials (especially phase I trials!) so that your wife, and me, and everybody else with MS might benefit someday.

_________________
Take care, Ewizabeth Previously Avonex, Rebif & Copaxone RRMS ~Tysabri, 31 infusions, ended 9/09. Starting Copaxone 12/09, waiting for Cladribine to be approved in 2010.