My Pirfenidone Trial Update

[Guest guest]

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

[Guest guest]

Ken,

Thank you so much for the update. Keep us posted.

Leanne

[Guest guest]

Ken ... Much good luck to you on these studies!

MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

My Pirfenidone Trial Update

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

[Guest guest]

HI , WHERE IS THE PIRFENIDONE TRIAL?

Angie

Subject: My Pirfenidone Trial UpdateTo: 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