Re: Re: Intermune's Pirfenidone announcement

[Guest guest]

my first pulmonary at Penn prescribed the cocktail of prednisone, immuran and prescription NAC

ILD is his specialty and the research that he read showed that some people do well for a period of time with the above cocktail.

The trial or testing in this country is relatively new, after the test results from other places were in.

No he did not say that it is a cure, just that some people do well with it. This was 3 years ago, so don't ask me for details.

Pink Joyce IPF 3/06 Pennsylvania

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Subject: Re: Intermune's Pirfenidone announcementTo: Breathe-Support Date: Friday, February 6, 2009, 2:53 PM

Yes, their documents paint a very positive picture even though admittingone of the two trials did not achieve the goals. But, we must keep inmind they were aimed at shareholders and potential investors and didhave the effect of raising the stock price.However, within the documents Ken put in the files section is all thedetailed information I posted here and more. I don't know where it willlead. I would imagine if you went to a dozen different medical centersyou'd get that many opinions. Opinions spread fast within universitymedical center staffs and then to all those affiliated doctors in theregion. The sad thing is that while the Pirfenidone trials aredisappointing, all the other things prescribed for PF (Imuran,Prednisone, even Colchicine or NAC or others) have never even beenthrough a government recognized clinical trial for PF (many are in somenow). So, all the prescribing

there is based on anecdotal evidence. Iwouldn't dismiss anecdotal by any means, as actual use and observationcertainly has its place.I believe ultimately we'll see Revatio and Tracleer successful in theirtrials for just what they are being tested and that is to increaseexercise tolerance. That makes perfect sense, knowing the other thingsthey both do and help. However, that is still far different than doinganything to stop PF or slow its progression.I'm sure if Pirfenidone is ultimately approved, it will be widelyprescribed as physicians so want to give you something even if theydon't necessarily believe it will benefit you. They feel helpless whenthey can't prescribe a cure. My rheumatologist is working so hard tofind something so he'll actually have a disease he can prescribesomething for.> > >> > >> > > It's me, the shameful lurker from Kansas. I'm so bad, but you guys>

are> > > so chatty - I can't keep up! Grin!> > >> > > I was just wondering if anyone else saw the announcement from> > Intermune> > > regarding their Pirfenidone studies and what you thought. If you> > haven't> > > seen it, I posted the press release on my blog -> > > www.heatherkirkwood .blogspot. com> > > <http://www.heatherk irkwood.blogspot .com> .> > >> > > We are using Pirfenidone in our clinical trial forHermansky-Pudlak> > > Syndrome at the NIH - the trial I am currently in. So, needless to> > say,> > > I can't wait to get my grubby little hands on this data!> > >> > > I just wish the release had sounded a little more inspiring whenit> > >

comes to the outcomes. But, I guess since they're moving forward> > that's> > > good news at least.> > >> > >> > >> > > > > >> > > Hermansky-Pudlak Syndrome type 1 albinism 02/ PF 06> > >> > >> > >> > >> > > Kirkwood Director of Outreach, Vice President> Hermansky-Pudlak> > > Syndrome Network One South Road Oyster Bay, NY 11771 1 (800)> 789-9HPS> > > www.hermansky- pudlak.org <http://www.hermansk y-pudlak. org/>> > Personal> > > blog: www.heatherkirkwood .blogspot. com> > > <http://www.heatherk irkwood.blogspot .com/> Search the Web

at> > > www.goodsearch. com <http://www.goodsear ch.com/> and choose the HPS> > > Network as your charity!> > >> >>