injection# 2

A board to discuss Tcelna as a treatment for Multiple Sclerosis

injection# 2

Postby Lars » Sun Aug 05, 2007 6:23 pm

Hey All,
Although I have been trying to curb my time spent "in forum" (I am finding the less immersed I am the better my denial works), I thought I would post an update. I had my 2nd series of injections on 8/3/07. Pretty standard stuff. No site reactions either time. I do however seem to get ill post injection. A few days of flu-like symptoms and a serious case of done-in even from an MS perspective. I haven't seen any noteworthy changes, good or bad since I have started. I will give it more time before filling out my "sticky Tovaxin users" entry. By the way maybe that post name should be changed to one more easily identifiable.
Not to start any wayward discussion here because I know how this can get, but I am almost certain this vaccine was a different color than the first. Hmmmmmmmm whats it all mean? That should keep the troops busy for a while.
Best wishes,
Lars
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Postby akaheather » Sun Aug 05, 2007 8:22 pm

Lars,

I remember feeling a bit under the weather after my first few injections. I mentioned to my neuro that I felt a bit "beat" for a few days after my injections, but he seemed to kind of dismiss it. It seemed logical, at the time, that if my body were to start fighting something, I would feel whipped.

I don't know if that makes sense. At any rate, I sure hope you're on the real deal and, of course, that it is working. Best wishes!

Heather
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Postby Loobie » Mon Aug 06, 2007 5:13 am

I never felt S%#@ after any of mine, and the injections were clear as a bell.
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Postby Lyon » Mon Aug 06, 2007 6:21 am

Now that you mention it, my wife has mentioned being beat when we get home but I've been so convinced that squirting your own blood cells back into you (or whatever carrier they use, if on placebo) would have no effect that I hadn't seriously considered her comments.

I honestly can't say one way or the other because injection day is a terribly long one for us. 8-12 hours total considering getting ready to go and travel time there and back. For that reason alone being tired seems justified. Heck, I'm beat when we get home!
Bob
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Postby IHaveMS-com » Mon Aug 06, 2007 8:26 am

Hi Lars,

Not to start any wayward discussion here because I know how this can get, but I am almost certain this vaccine was a different color than the first.


I have had several people send me a PM asking what my vaccine looks like. I don't bother looking anymore, but I did at first. It is murky (filled with or dimmed by fine particles (as of dust or water) in suspension). I would like to think that the folks at Opexa are smart enough to know that people in the trial would compare notes on what the vaccine looked like, and make the vaccine and placebo look the same.

As for how you feel after an injection, that would be related to the placebo effect and any feeling may be real or could be psychosomatic. I have never had an injection site reaction, and I don't remember feeling any ill effects after an injection.

With regards to Chris' concerns about the stock price, if Tovaxin works, it will make it to the marketplace. The majority of Opexa investors are either VC (venture capitol) or PIPE (private investment in public equity). Both types march to a different drummer.
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 JanethePain » Mon Aug 06, 2007 2:22 pm

Lyon wrote:Now that you mention it, my wife has mentioned being beat when we get home but I've been so convinced that squirting your own blood cells back into you (or whatever carrier they use, if on placebo) would have no effect that I hadn't seriously considered her comments.

I honestly can't say one way or the other because injection day is a terribly long one for us. 8-12 hours total considering getting ready to go and travel time there and back. For that reason alone being tired seems justified. Heck, I'm beat when we get home!
Bob


I'm in the "long space" between jabs just now (July 25 and the next one October 17). I chalk up my Shot Day Exhaustion due to the staff scheduling me for times like 7:30 am... which means I have to be on the road by 5:30 am to get there in time. And because I'm such an obsessor, that means I don't sleep that well the night before.

They've still got me slotted early for the November one BUT, thank God and Greyhound, my dears, my pleas (that have lately turned not-so-dweet in tone and volume) for the January appointment HAVE yielded a change. I get an afternoon appointment! I was <--> that close to demanding the study pay for a hotel so I could drive up the night before had they not come around--driving in early summer sunrises is one thing--fighting post-holiday snow (and lately, ICE) on I-71 is quite another!!!

I'm also curious to see if those of us in this brutal "heat zone" will feel better once this weather breaks. We're scheduled to hit 100 or more this Tuesday--this hasn't happened in a long time here.

And despite my feeling SO much better, the slightest exposure to this mess drags me down like crazy.

So here's to feeling better, kiddos, which I think is definitely on the way with the first promises of AUTUMN! 8)
Jane the Pain
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Postby JanethePain » Mon Aug 06, 2007 2:25 pm

IHaveMS-com wrote:... I have had several people send me a PM asking what my vaccine looks like. I don't bother looking anymore, but I did at first. It is murky (filled with or dimmed by fine particles (as of dust or water) in suspension). I would like to think that the folks at Opexa are smart enough to know that people in the trial would compare notes on what the vaccine looked like, and make the vaccine and placebo look the same.


Hmmmm, I tend to agree with you on 99% of these things, Tim, but the fact remains that some of us are getting the dead-ringer for Yoohoo Chocolate Cola and the others are getting clear liquid that looks like my old Avonex.

Maybe we're all getting teased and the Yoohoo comes in "regular" and "placebo" as well as the Avonex knock-off.

:lol: I've been out too much in this sun today... :D
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Postby Loobie » Mon Aug 06, 2007 3:09 pm

Jane,

You should see if you can get your trial stuff done at the location I'm doing it at in Dayton. It would be a much shorter drive for you. PM me if you are interested and I'll give you the details of where I'm doing it.
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Postby Lyon » Mon Aug 06, 2007 3:23 pm

JanethePain wrote:I was <--> that close to demanding the study pay for a hotel so I could drive up the night before had they not come around--

Hi Jane,
Although it does make for a long day, because we live so distant our trial staff go out of their way to schedule everything into one day in order to cut down the trips we have to make. It sounds like that might be what your trial staff is also doing but maybe they didn't put it into words?

Bob
Last edited by Lyon on Mon Aug 06, 2007 4:17 pm, edited 1 time in total.
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Postby IHaveMS-com » Mon Aug 06, 2007 3:26 pm

Hi Loobie,

Bob posed this same question a while back. Where you start the study is where you will finish the study. I still fly 1,100 miles to Houston. There are probably 10 sites closer, but I will continue to go to Houston until Tovaxin is approved.

I am off to an educational experience without parallel. An evening with Homer, Marge, and the rest of the crew. I will practice spelling world backwards during the lulls.
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 » Mon Aug 06, 2007 7:38 pm

Image
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Postby IHaveMS-com » Mon Aug 06, 2007 7:46 pm

drolw -- Doh

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Postby Lyon » Mon Aug 06, 2007 7:59 pm

Was it good TIm? I was surprised that it was pretty highly rated.
Bob
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Postby IHaveMS-com » Mon Aug 06, 2007 8:17 pm

according to Maggie
------SEQUEL-------
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Postby Lars » Mon Aug 06, 2007 8:35 pm

To clarify a bit, flu-like was probably not the most appropriate description. Early stages of relapse may be more fitting. All of my existing symptoms seem to worsen considerably for a few days, this time worse than the first. As for the placebo effect, I am certain that I am as susceptible to that as the next person, problem is, I was sure I would feel BETTER. Although, now that this seems to be my reality, is it really reasonable to assume that injecting oneself with a vaccine designed to alter you at a cellular level would have zero side effect across the board? I have always found that the "no side effects" claim of Tovaxin seemed unrealistic and somehow too easy. Don't get me wrong, I'm not complaining, I am OK with any eventuality and have been since long before I signed up. In fact I was very ready to try Tysabri back when people were dying and before I heard of Tovaxin. To get more to the point, it is a trial, we all know that, but can we expect that a disease breakthrough drug will have fewer side effects for every single participant than aspirin.
For my own mental record as much as anything, I am sure my first vaccine was Gin clear and the 2nd was murky. Maybe the first vaccine is different for some reason. I have wondered why there is no MRI after the first injection.
I think I'll hibernate for a while.
Well Wishes,
Lars
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