Monday, February 16, 2009

Interview with Jerry Maguire on Pagoclone

Check out Jerry Maguire's latest interview on StutterTalk: here .

Here is a quick summary of what he roughly said with [my comments]

  • Phase IIb is starting up very soon in March with 30-40 centres around the US. [great news to see the first very serious study on medication to start]
  • If you want to participate, contact him. [if you ever thought about trying medication, this is a unique opportunity and for free.]
  • They will test different doses. [important to see whether it is doses dependent and what the threshold doses is where no more benefit is seen.]
  • Phase II will be published in a peer-review journal in a few months. [finally with a too long delay for any real debate to have happened]
  • Most importantly, they extend the double blind from 2 to 8 months. [great, so this is a must]
  • Not everyone will benefit from Pagoclone. [Why? If stuttering is about dopamine level which Pagoclone indirectly changes, should not everyone benefit?]
  • Group effect is misleading because some might benefit a lot and others don't. So only looking at average is  not very informative. [I completely agree, but the extremes might also be because a lot severe stutterers got a lot better or mild stutterers a bit better which is a big percentage in stuttering severity. I can go from very dysfluent to very fluent.]
  • They check speech itself. Shorter blocks? Lower frequency? Is it correlated to doses? [This could be very interesting information]
  • Decrease of social anxiety in Phase II is not surprising because Pagoclone was designed as anti-anxiety drug. [could most of fluency effect come from this? it might increase the level at which stuttering behaviours are triggered.]
  • Pagoclone is nowhere available except in the US. [I guess it is because Indevus holds the patent. But if you know the chemical structure which is probably made explicit in the patent documents. You could in theory produce it.]
  • Question: How many have discontinued use based on his clinical experience? Answer was not completely clear. 50% have not seen any effects, and others have stopped because effects were not outweighing costs. [No directly answered. Of all the patients that he treated, I am convinced more than 50% are not using medication any more. My guess is less than 20% of this patients are still on after 12 months.]
  • Measuring should be 24/7 like a heart beat monitor. [An interesting concept. I will write a post about it]
  • He guessed that at least a reduction of 20-30% of stuttering is needed for people to keep taking the medication. [That is interesting information which we can use to compute the benefit-cost relationship. So the costs of taking medication is at least 30% less stuttering.]
  • Tolerance to medication is another issue. After some time, you either need higher and higher doses or it is not effective any more. Pagoclone has less issues. [This is a real issue. Maybe it works for eight months but then the effect goes away?]
  • Questions: are other areas of the brain impacted by Pagoclone. With more less impact that others. [But still there will be impact to the whole brain. But if Pagoclone has less impact of the whole brain, why should it have big impact on stuttering? And if a subtle impact will improve fluency, could there not be other impacts on other areas? The only way someone would do this is because the benefits.]


Anonymous said...

I work at a clinic in Atlanta that is going to be running this study. If you are in our area call 770-817-9200. We will ask you a few questions over the phone to check some basic qualifications and then schedule an appointment to review all the details.
The clinic is called the Atlanta Institute of Medicine & Research.

We hope to be able to help.

Anonymous said...

Jerry Maguire is a classic! I hope I can find a dvd of this somewhere.. I found a Jerry Maguire spoof on youtube though! :)

Unknown said...

The people who conducted the study I was going to be involved in dropped me from the program because they said my stuttering is not severe enough. My stuttering has now become worse and at times I can barelt speak at all. dr. maguirewont help.

Devanshu said...

Hi all,

Still i am confuse that pagaclone is really affecting on stuttering or not?

There are vast verity of opinion from different guys..

Can any one have more information?

In India I have found one Ayurvedic medicine and some yoga techniques which really reduce the dopamine (As pagalcone does as per they saying).

though my stuttering not completely went but it reduce upto some extent.....