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A board to discuss Tcelna as a treatment for Multiple Sclerosis

Postby av8rgirl » Sun May 22, 2011 11:42 am

This is getting to be tedious arguing/discussing information that we don't have and probably never will have!

However, here's my opinion based on information I do have --

My clinical trial site was 450 miles ONE WAY and i was never reimbursed for anything during the entire time I was in the trial. Airfare, hotels, rental cars, food, gas, wear and tear on my car when I drove because the weather was so bad I couldn't get a flight, out of pocket medical expenses for exacerbations, treatment of side effects for the vaccine reactions, and my time off work.

I also had to deal with the arrogant behavior of the clinical trial neurologist who, by the way, never bothered to spend the time for an exit interview with me when the trial was shut down.

Given all this, if given the chance to re-enter the trial for this drug, I would in a heartbeat! WHY? Because of all the MS disease-modifying drugs I have tried, this is the ONLY one that has slowed down the rate of exacerbations I have had since I was diagnosed with this disease in 2001. MY disease, my choice. No one but me can make that decision.

Jane - I would have to go pull that data for you. I do not remember off the top of my head. I was not directly involved in Tysabri Trials, just collected data.
“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 Lyon » Sun May 22, 2011 11:54 am

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Last edited by Lyon on Tue Jun 21, 2011 2:20 pm, edited 1 time in total.
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Postby av8rgirl » Sun May 22, 2011 1:48 pm

Lyon wrote:
av8rgirl wrote:Given all this, if given the chance to re-enter the trial for this drug, I would in a heartbeat! WHY? Because of all the MS disease-modifying drugs I have tried, this is the ONLY one that has slowed down the rate of exacerbations
I don't blame you, my wife would too.

I know you are aware of exactly what Tovaxin is and that it was only a slip of the tongue but for those who have never heard of Tovaxin who might read this IT IS NOT A DRUG and is instead a treatment. Sort of a vaccine in which some of your blood is removed and the myelin reactive T cells are separated and greatly multiplied and then radiated to the point that they are still active but unable to replicate and then injected back into the registrant with the hopes that the immune system will eliminate them and learn to eliminate others like them.


thanks for the reminder Lyon....

Condescending does not become you...or are you intentionally trying to piss me off?

Done with this ....
“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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