Pirfenidone - importing from Japan

[Guest guest]

Hello everyone,

I am new to the group. I was diagnosed in early 2006 with IPF. I have tried the

combination drug therapy but it didn't help. Prednisone caused fluid build-up in

my lungs.

Question: does anyone have any information about getting Pirfenidone from

Shionogi in Japan?

I want to try Pirfenidone to avoid a lung transplant. My FVC and Diffusion rates

both below 50% predicted and I am on O2 24/7.

Since I have failed the standard treatment and there is no other, I am quite

confident my doctor and I can get approval from the Canadian government under

its " Special Access Program " to use Pirfenidone. The US has a similar program

but I don't recall what it is called.

My problem is getting the Pirfenidone. InterMune told me they will not sell or

release any until their CAPACITY trial results are available in 2009. The

InterMune person told me to contact Shionogi in Japan, but was only able to give

me a phone number.

Before reinventing the wheel by calling them, I am hoping someone has already

successfully done this, and can tell me how to do it.

Anyone know anything?

Thanks.

Cameron