Re: My Pirfenidone Trial Update (Angie)

[Guest guest]

Is this trial also being done at a hospital in Denver? I called

someone at I think a " Jewish " named hospital and they told me the

trial they were doing for IPF did NOT show any improvement. The trial

was completed, and they were going to report the results next year. I

am not sure what drug it was. Does anyone know what drug that may be?

Sue

>

>

> Subject: My Pirfenidone Trial Update

> To: Breathe-Support

> Date: Tuesday, September 23, 2008, 9:30 AM

>

> I promised to keep both the Breathe Support and PFF groups updated

on my

> results in the Pirfenidone drug trial so here is the latest update

which I

> will post to both groups. I wont find out if I was on the real

medicine or

> placebo until all participants in the capacity study have completed

(maybe

> Jan 2009).

>

> September 22, 2008 The Pirfenidone Capacity trial is over for me and

today

> I began the open label pirfenidone study. I had a PFT to

commemorate the

> occasion and the results were slightly improved from the last one.

My FVC

> was 4.22 (92% of predicted) my FEV1 was 3.42 (109% of predicted) and

best

> of all my DsbHb (DLCO) was 18.51 (71% of predicted). I'm continuing to

> function without the use of supplemental oxygen except under pretty

intense

> exercise (like treadmill over 3.6MPH at 10% elevation). I'm able to

> complete 40 minutes on the treadmill at 10% elevation walking at 3.4MPH

> with my saturation staying right at 90. I can go up to 4.0MPH but my

> saturation falls into the mid to low 80's.

>

> In the Open Label study I get the real medicine so I'm ramping up to

full

> dosage over the next three weeks. Starting with 1 capsule three

tines a

> day for the first week increasing to 2 capsules three times a day the

> second week and finally up to 3 capsules three times a day from then

on.

> As I have posted before I was initially diagnosed in Dec 2005 and had a

> confirming VATS biopsy in Oct 2006. I entered the Pirfenidone Capacity

> drug trial Feb 2007 and the Open label drug trial Sep 2008.

>

> Ken Baker UIP/IPF 12/05 New Hampshire

>