Re: Pirfenidone

[Guest guest]

Hi! I was wondering what you have heard about pirfenidone? I know someone who had a problem with it and was taken off of it. Are there any other problems? I am just wondering because Intermunne is the company that is marketing pirfenidone. Intermunne illegally marketed Actimunne to IPF patients. Intermunne chooses drugs that are prescribed for rare conditions. It seems that Intermunne is trying to find more uses for these rare-condition drugs. Intermunne was indicted by the government for the illegally marketing of Actimunne to pulmonary doctors to prescribe to their IPF patients. Now the patients who paid for Actimunne can join a class action lawsuit.

Toodles!

Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl

>> Anyone ever actually "first person" spoken to IPF victim who is being > prescribed Pirfenidone, or is everything simply hearsay?> If so, what have been the results?>

[Guest guest]

I have spoken to two people directly and chatted with several others. Of

the two I've spoken to directly both were on trials very early, before

the current trials, and have been on the real thing. One has remained

stable and the other has deteriorated significantly and recently had to

be removed from pirfenidone which may or may not be causing problems.

More should be known shortly on his condition.

This trial is even more difficult to speculate on than most because you

have to be so early and have such a mild level of the disease to

participate. I've chatted with several who are convinced its helped them

remain stable and others who have no idea if its helped. The reality is

that many at those levels remain stable with or without pirfenidone for

a period. So, until the trials are complete and evaluated we really can

and will know nothing. The Japanese trials are looked at by some as

positive but considered poorly run and constructed and of no scientific

value by many medical professionals. Since the trials start with such

early stage (I wouldn't have been eligible the day I was diagnosed), it

will really take years of the current trials to know anything. Now the

two persons I mentioned speaking to directly have been on it for years

but their trial groups were only around 3 patients.

>

> Anyone ever actually " first person " spoken to IPF victim who is being

> prescribed Pirfenidone, or is everything simply hearsay?

> If so, what have been the results?

>

[Guest guest]

Jane

I reiterate what Jane has said. Until the trials are done do not believe

any press releases put out by Intermune's investor relations department

which imply success and positive outlook. You don't see that from Pfizer

on Sildenafil. Actimmune was prescribed off label. Unlike Sildenafil

which at least has had broad use for other things and therefore the side

effects are well known, the side effects of Pirfenidone, especially long

term use, are still to be determined. Part of the criticism of the

Japanese study was it being terminated too soon. We can only all hope at

this point.

> >

> > Anyone ever actually " first person " spoken to IPF victim who is

being

> > prescribed Pirfenidone, or is everything simply hearsay?

> > If so, what have been the results?

> >

>

[Guest guest]

Hi, We have a member Ken who is in the trial. I am pretty sure he'll see your post and respond. The other member Jon was on it and had to get off because he had some bad reaction.. Can't remember how long he was on it.. I think Ken is in the same trial. One from Ma other from Tx.  Love and Prayers, Peggy   IPF  2004,  Florida"Worry looks around, Sorry looks back,  Faith looks up."

[Guest guest]

I’m in the final weeks of the 72

week pirfenidone clinical trial but will not find out if I’m on a

placebo or the real pirfenidone for a couple of more months (when the final

person in the study has completed). I have had no adverse reactions in

the study and my Pulmonary Function Tests (PFTs) have slightly improved.

I was diagnosed in Dec 2005 with UIP/IPF and had a confirming VATS Biopsy in

October 2006. I entered the clinical trial Feb 2007 and will go in for my

week 72 tests and exam next week. I have been accepted into the open

label follow on study which will begin following a “wash out”

period (several weeks I believe). At that time I will be on the real pirfenidone

for sure and will be having regular follow up visits. I’m enrolled through

Beth Israel

Deaconess Medical

Center in Boston

which is affiliated with Harvard

Medical School.

I live in Southern NH about 50miles north of Boston MA.

I’m also on the PFF Yahoo group and

one member there who just had a double lung transplant was on pirfenidone as

part of the ph Stendig lawsuit against intermune. He is off the

medicine now as he has new lungs. If you google ph Stendig you can read

some of the details about that suit.

I hope this information is helpful.

Ken Baker UIP/IPF 12/05 New Hampshire

From: Breathe-Support [mailto:Breathe-Support ] On Behalf Of bmcquays

Sent: Monday, July 07, 2008 11:40

AM

To: Breathe-Support

Subject:

Pirfenidone

Anyone ever actually " first person " spoken

to IPF victim who is being

prescribed Pirfenidone, or is everything simply hearsay?

If so, what have been the results?

[Guest guest]

OOPS sorry Ken. I just moved you to another State.. OD Love and Prayers, Peggy   IPF  2004,  Florida"Worry looks around, Sorry looks back,  Faith looks up."

[Guest guest]

That’s OK just take another shot of Oxygen

for me.

From: Breathe-Support [mailto:Breathe-Support ] On Behalf Of Peggy

Sent: Monday, July 07, 2008 5:10

PM

To: Breathe-Support

Subject: Re:

Pirfenidone

OOPS sorry Ken. I just

moved you to another State.. OD

Love and Prayers, Peggy

IPF 2004, Florida

" Worry

looks around,

Sorry looks

back,

Faith looks

up. "