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I am in the trial, but got questions

Posted: Thu Jan 22, 2009 8:13 pm
by Grumpster
I have been accepted into the trial after a battery of tests the other day. The coordinator said to stop the Rebif crap from hell that i am on now to start the 28 day wash out period. then he said that the results of the randomization will not be known until the day of the first treatment. Only then will I know that I was selected for the Campath arm, not the Rebif arm. That sounds crazy. What a poor study design. I will know in 28 days, but not know? I stop Rebif and go with nothing even if I am in the Rebif arm??!! Is this the same as the rest went through? I have to know if this is really the way it is supposed to work. Hopefull as ever that I have been selected for Campath. 2 years with no more shots - F-Yeah! Possibly slowing the MS monster..F-Yeah double time!! I got word yesterday that I got new lesions on my thorasic spine area, which is likely why I can not feel my damn right leg anymore...what the hell? I hope it comes back...hard to walk when all is numb..

Grumpy 8O

Posted: Fri Jan 23, 2009 7:03 am
by patientx
I don't have any answers, but that does sound pretty screwed-up.

Good luck.

Posted: Fri Jan 23, 2009 8:46 am
by ssmme
I know its frustrating but they have to follow a specific protocol and the method is to wash from all treatment prior to beginning initial treatment in the trial. This keeps everything on the up and up with no question about the clinical procedure. It sucks to have to jump through the hoops but in the end it's for the most accurate results.

Marcia