Thursday, May 25, 2006

Before I take Pagoclone

... I would set myself 10 criteria that the medication needs to satisfy. Here are they plus my arguments.

1) The drug has been commercially available for 3-5 years without major negative news and gossip. I want to see whether Pagoclone survives the reality test away from random control trials with well-briefed doctors and especially-selected patients. The commercial use must not necessarily be for stuttering.

2) I convinced myself that the effect size is large. Taking any medication is about balancing risks, and I am only willing to take the risks on (known and unknown long-term) side effects if the effect of Pagoclone is significant (not just a bit more fluent) and lasting.

3) I convinced myself that the effect is not just due to what Pagoclone has been designed for anti-anxiety. It is possible that the positive effect claimed is due to the anti-anxiety effect. Effectively, patients know that they are on Pagoclone, because they become more relaxed. And then the placebo effect also sets in, and together greater fluency is achieved. Also, I rarely experience anxiety, and I am wondering what the drug would do to me mentally. Am I going to turn into a wild inhibited animal? :-)

4) I convinced myself that a scientific study of long-term user of Pagoclone has shown minimal and reversible side effects. My stuttering does affect my life and reduces my potential in certain situations, but I do not think I would trade more fluency with weight gain, headaches, or other effect lightly.

5) The FDA has made a positive statement on side effects and for use to treat stammering. But I would still be hesitant. I spent a lot of efforts to understand stuttering, and the issues are damm complex. So I cannot see how the generalist FDA would understand the issue better, on the contrary. So I would not trust them on what they have to say about its use for treating stuttering, but most certainly on their statements regarding side effects.

6) Neurologists or other related experts not linked in any way to Indevus recommend its use. Stuttering is potentially a multi-million market, and a lot of recognition for the involved researchers / doctors. Also, Indevus has spent a lot of money on these trials. This is just a precaution, and a best practise in any risk management. Wishful thinking and money are always a very strong motivator to twist and spin. Always ask outsiders for a second opinion.

7) Neurologists or other related experts who STUTTER themselves use Pagoclone to treat their own stuttering!!!! :-) This would be strong evidence that Pagoclone is effective and safe. They are professionals and know the realities, and are able to make a much better judgement call than myself.

8) The hype and discussions on Pagoclone are over. Currently, we are in a hype period. News came out, and many journalists are picking it up. They are no experts, and need to simplify issues for the reader. So expect white and black comments rather than greyish. Such comments will be taken on, and this will lead to strong clear-cut opinions being formed. So it is always best to wait for things to cool down until everyone is bored about it!!

9) I have personally spoken to 2-3 people who took / are taking Pagoclone. Scientific studies are crucial, but talking to actual people is a very insightful reality check.

10) Pagoclone does not delay or inhibit ejaculation. Indevus wants to sell Pagoclone to treat men with pre-ejaculation. Then the question arise whether normal man are also impacted? If so and in a significant way, I would need to think hard about this one.


Anonymous said...

thanks, this article was helpful.

Anonymous said...

as for the ejaculation issues, you may want to rephrase "think hard."