Friday, October 16, 2009

A Pagoclone trial participant reports

I got an email from a participant of the Pagoclone trial. He is one of 300 that participated, and he suspects that he was in the treatment group and saw benefits at the higher dose. He started in April and is now moving to the open label phase, which means that the double blind is finished (as I suggested) and everyone gets Pagoclone openly to see the long-term impact. For long-term impact, you could argue that nobody cares about placebo or not: what works works - no matter how it works.

Here is his report:
I wanted to give you an update as to my experience with the pagoclone study. I've been on it since around April or so. At least I suspect that I have been on pagoclone for at least part of this time. I was initially given a dosage of two pills twice a day, which lasted for the first month and then went down to a dose of one pill twice a day. I do believe that I experienced a modest improvement in my fluency, somewhere around maybe 40% better fluency, and then after the dosage change I experienced a pretty dramatic drop in fluency to almost pre-study levels. At my last visit, three weeks ago, I was informed that I am transitioning from phase 1, double blind study, to phase 2, open label study, and should find myself on the placebo during this 8 week period to accurately transfer to the open label phase. When this occurred, whether real or as a result of being informed by the Dr. that I would be on the placebo, my stuttering increased dramatically and am now definitely at pre-study disfluency levels or worse.
So to sum up, I do believe that I have been on the medication for at least part of the study. I do believe that when I was taking the higher dose my fluency was MUCH better. I do believe that the lower doses and the placebo have had a dramatic effect on my speech to pre-study levels or worse.

Since April I have experienced zero side effects. No headaches, weight gain, sleeplessness, nothing. Of course, I don't have a clue as to what my blood work shows but am sure if there was a problem, then the clinic would have most likely informed me.
Overall, I have been happy with the results from the first part of the study and would definitely purchase this medication at the higher dosage level. At the lower level, if the price was cheap enough I would purchase the medication but it would have to be cheap as the rewards were minimal.

I hope this gives you some idea as to how the medication is working for at least one person.


Anonymous said...

This is good news and by the way I just found out about the blog and I really like it.

Kurt The Hurt said...


That seems a positive report from my perspective. If it works, and there are no real side effects - then it must just be worth it. I'm looking forward to reading more about pagloclone.

Frank said...

Woah! Finally a great news!