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Bruce,Hope the vit d stuff helps.Roxanne, 59, South Carolina

2006 Asthma/ PF

2008 PF/ Sarcoidosis/Gerd

I pray you enough.....Subject: Re: Lumping of the diseasesTo: Breathe-Support Date: Saturday, January 2, 2010, 9:20 PM

 

Roxanne

Thanks for the Vitamin D information as I know I and others here have

been found to be deficient and I'm on 50,000 i.u. of Vitamin D per week

just as in your attachments. Mine was found to be low by my

nephrologist. Now, I've not been diagnosed as having Sarcoid but then

again I do have many elements of it. So, at the least, gives some pause

and thought to discuss with my nephrologist when I see her this month.

Also, tells me that I may want the 1,25D run when she does her labs,

just to see what it indicates.

>

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> > From: Bruce <brucemoreland@ gmail.com>

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> > Subject: Lumping of the diseases

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> > To: Breathe-Support@ yahoogroups. com

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> >

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> > Date: Saturday, January 2, 2010, 10:29 AM

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> > Â

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> > I found it interesting to read some more date published by

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> > the

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> > University of Pittsburgh ILD center.. Here are the patients who went

to

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> >

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> > their center from January 1-October 14, 2009.

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>

> >

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> >

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> > Now, tossing out some more interesting information (at least to me)

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> and

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> >

>

> > that is a breakdown of the patients who went to the University of

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> >

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> > Pittsburgh ILD center from January 1-October 14 of last year.

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> > IPF UIP 574

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> >

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> > Sarcoidosis 502

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> > PF Rheumatoid Condition 277

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> >

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> > ILD Ruled Out 179

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> >

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> > Under Evaluation 179

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> >

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> > Hypersensitivity Pneumonitis 51

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> >

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> > PF of other Causes 49

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> >

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> > Other IIP's 44

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> > Pulmonary Hypertension 33

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> > Occupational Diseases 26

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> > So, only 30% of the patients had IPF UIP.

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> > I'm surprised we don't talk more here about Sarcoidosis and that

makes

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> >

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> > me think either they're going to their own forum and/or its being

>

> >

>

> > underdiagnosed by many doctors. Also note that of the patients sent

to

>

> >

>

> > the ILD center approximately 10% were determined not to have an ILD

>

> and

>

> >

>

> > another 10% haven't been determined yet.

>

> >

>

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linda

the eye doctor ordered hydro tears for my dry eyes

besides helping my eyes, the dry mouth and dry feet stopped too

then the cardiologist saw that i was on hydro tears and said it is the same as Lovaza, so he ordered that instead because it is also good for the heart

so i went from taking 4 otc gel caps, to taking 2 prescription gel caps per day

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: Lumping of the diseasesTo: Breathe-Support Date: Saturday, January 2, 2010, 9:03 PM

Roxanne, Thank you so much for so much information. My friend has lung involvement with her sarcoid .It is one of the reasons she moved here ( 55+ one floor ranch style homes). Steps are a problem for her too.She has the fatigue too. I will tell her about the sarcoid group. Thanks a lot.I have the dry eye/mouth issues because of medications and I also use Biotene products.There is an eye drop ( Refresh Plus) that I find really works daytime and they also have a gel formulafor night time that is an absolute G-d send. Happy New Year and thanks again for sharing.

Z 65, fibriotic NSIP/05/PA

And “mild†PH/10/07

No, NSIP was not self-inflicted…I never smoked!

Potter, reader,carousel lover and MomMom to Darah and Sara

“I’m gonna be iron like a lion in Zion†Bob Marley

Vinca Minor-periwinkle is my flower

Roxanne Wooten wrote:

, I'll be glad to tell you. Your friend may not have it in her lungs. Sarcoid is a multi system inflammatory disease which causes the destruction of the organs in the body. In my case, I have in in my lungs, lymph glands, salivary and lacrimal glands and in my nose. There are many people who have it much worse by having neuro-sarc, bone sarc or cardiac sarc. I have chronic dry eye, cataracts(early stage) and just had laser surgery on both eyes to alleviate pressure from the beginning of glaucoma. My eyes hurt like there is something in them all the time. I do use prescription eye drops and over the counter too, but they still hurt most of the time. I have chronic dry mouth which causes problems in swallowing and things get stuck. I have to be meticulous with my dental care because not producing saliva causes health issues with the bacteria that saliva usually helps reduce. I use biotene toothpaste and

mouthwash 3 or 4 times a day and keep sugar free candy and cough drops with me at all times. I am extremely thirsty all the time. My nasal sarc has just reared its head. I didn't have it there when scanned 3 months ago and its there now. This is the way sarcoid seems to be. I have sores (much like fever blisters or cold sores) around the inside and outside of my nostrils. Sometimes wearing my oxygen canula hurts. My bipap uses a nose piece, so many nights I can't wear it due to the pain in my nose. My nose runs a lot but is also stuffy. I have had antibiotics 3 times in the last 6 months for sinus infections. Sarcoid also causes extreme fatigue. Most days I am good for about 4 hours and am totally wiped out to where I feel like I can't hold my head up any longer.. My legs and feet swell causing aching even when sitting. Some people have skin lesions anywhere on the body and some are quite

pronounced. These are horrible ugly sores and I can't imagine the isolation people with them feel.

People on the board for sarcoidosis tell me that those who have it in their bones or spine suffer debilitating pain even with medication. They simply hurt all the time. Those with it in the brain have a multitude of symptons with balance, mobility, speach etc. I could go on and on, but I think you get the picture. Most people diagnosed with sarcoidosis start out being told they probably have MS (as I was) or lymphoma. Our biopsies prove otherwise. I was told by my pulmo that I would have been lucky to have lymphoma instead of sarc.

Your friend may already know about the Foundation for Sarcoidosis Research, but if she doesn't, tell her to google it and join. Just like this board, there are a lot of well informed people there and just like here a lot of them know more than their doctors. Or you can give her my email and have her drop me a line.

Thanks for asking, hope I didn't whine too much!

Roxanne, 59, South Carolina2006 Asthma/ PF2008 PF/ Sarcoidosis/ GerdI pray you enough.....

From: Bruce <brucemoreland@ gmail.com>Subject: Lumping of the diseasesTo: Breathe-Support@ yahoogroups. comDate: Saturday, January 2, 2010, 10:29 AM

I found it interesting to read some more date published by theUniversity of Pittsburgh ILD center. Here are the patients who went totheir center from January 1-October 14, 2009.Now, tossing out some more interesting information (at least to me) andthat is a breakdown of the patients who went to the University ofPittsburgh ILD center from January 1-October 14 of last year.IPF UIP 574Sarcoidosis 502PF Rheumatoid Condition 277ILD Ruled Out 179Under Evaluation 179Hypersensitivity Pneumonitis 51PF of other Causes 49Other IIP's 44Pulmonary Hypertension 33Occupational Diseases 26So, only 30% of the patients had IPF UIP.I'm surprised we don't talk more here about Sarcoidosis and that makesme think either they're going to their own forum and/or its beingunderdiagnosed by many doctors. Also note that of the patients sent tothe ILD center approximately 10% were

determined not to have an ILD andanother 10% haven't been determined yet.

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knew about Goulet and Kineval dying from PF, didn't know they had sacoid also

knew about Mac have sarcoid and PF

there was also a singer, forget her name, don't remember if she had sarcoid too

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: Lumping of the diseasesTo: Breathe-Support Date: Saturday, January 2, 2010, 9:19 PM

I'll post my results when I get home from ton.

As far as not many people dying from sarcoid, the most recent and well known include Bernie Mac, Goulet and Evil Kenevil . The problem with sarcoid is that most of the people who die do so from respiratory complications- --does this sound familiar? Pneumonia is probably the most common cause of death in those with pulmonary sarcoid. I don't know about death rates among other types of sarcoid, but my pulmo advises me that I am an extremely high risk patient due to my sarcoid.

I'll hope your PF diagnoses will not include a sarcoid diagnosis. Keep trying to get to a center of excellence. I have seen many people here glad they went.Roxanne, 59, South Carolina2006 Asthma/ PF2008 PF/ Sarcoidosis/ GerdI pray you enough.....

From: Bruce <brucemoreland@ gmail.com>Subject: Lumping of the diseasesTo: Breathe-Support@ yahoogroups. comDate: Saturday, January 2, 2010, 10:29 AM

I found it interesting to read some more date published by theUniversity of Pittsburgh ILD center. Here are the patients who went totheir center from January 1-October 14, 2009.Now, tossing out some more interesting information (at least to me) andthat is a breakdown of the patients who went to the University ofPittsburgh ILD center from January 1-October 14 of last year.IPF UIP 574Sarcoidosis 502PF Rheumatoid Condition 277ILD Ruled Out 179Under Evaluation 179Hypersensitivity Pneumonitis 51PF of other Causes 49Other IIP's 44Pulmonary Hypertension 33Occupational Diseases 26So, only 30% of the patients had IPF UIP.I'm surprised we don't talk more here about Sarcoidosis and that makesme think either they're going to their own forum and/or its beingunderdiagnosed by many doctors. Also note that of the patients sent tothe ILD center approximately 10% were

determined not to have an ILD andanother 10% haven't been determined yet.

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Beth,

You are so right. There are so much confusion with terminalogy. My doctors

have used PF and UIP almost interchangably and it is so confusing. I don't care

what you call it just tell me what to do to make it better or slow it down. Ha!

My brother passed away in 2000 from IPF and I have it and now my older sister

MAY have it or some type of lung disease. So they may change my diagnosis to

Familial PF. Who knows?

Jim

> > > >

> > > >

> > > > From: Bruce <brucemoreland@ ...>

> > > > Subject: Lumping of the diseases

> > > > To: Breathe-Support@ yahoogroups. com

> > > > Date: Saturday, January 2, 2010, 10:29 AM

> > > >

> > > >

> > > >

> > > > I found it interesting to read some more date published by the

> > > > University of Pittsburgh ILD center. Here are the patients who

> went to

> > > > their center from January 1-October 14, 2009.

> > > >

> > > > Now, tossing out some more interesting information (at least to

> > > > me) and

> > > > that is a breakdown of the patients who went to the University of

> > > > Pittsburgh ILD center from January 1-October 14 of last year.

> > > >

> > > > IPF UIP 574

> > > > Sarcoidosis 502

> > > > PF Rheumatoid Condition 277

> > > > ILD Ruled Out 179

> > > > Under Evaluation 179

> > > > Hypersensitivity Pneumonitis 51

> > > > PF of other Causes 49

> > > > Other IIP's 44

> > > > Pulmonary Hypertension 33

> > > > Occupational Diseases 26

> > > >

> > > > So, only 30% of the patients had IPF UIP.

> > > >

> > > > I'm surprised we don't talk more here about Sarcoidosis and that

> makes

> > > > me think either they're going to their own forum and/or its being

> > > > underdiagnosed by many doctors. Also note that of the patients

> sent to

> > > > the ILD center approximately 10% were determined not to have an

> > > > ILD and

> > > > another 10% haven't been determined yet.

> > > >

> > > >

> > > >

> > >

> >

>

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Bruce,

Thanks for the info! As always, you are up on the research and knowledge! What

is so frustrating with the research or lack thereof, is that things change

rapidly when new discoveries are found or they have ruled out a possible cause.

I guess we need to have a " hotline " to the researchers to give us a call when

there is something happening so we can have the latest news quickly. Ha! Well,

we can wish can't we?

Jim

> > > >

> > > >

> > > > From: Bruce brucemoreland@

> > > > Subject: Lumping of the diseases

> > > > To: Breathe-Support

> > > > Date: Saturday, January 2, 2010, 10:29 AM

> > > >

> > > >

> > > >

> > > > I found it interesting to read some more date published by the

> > > > University of Pittsburgh ILD center. Here are the patients who

> went to

> > > > their center from January 1-October 14, 2009.

> > > >

> > > > Now, tossing out some more interesting information (at least

> to

> > > > me) and

> > > > that is a breakdown of the patients who went to the University

> of

> > > > Pittsburgh ILD center from January 1-October 14 of last year.

> > > >

> > > > IPF UIP 574

> > > > Sarcoidosis 502

> > > > PF Rheumatoid Condition 277

> > > > ILD Ruled Out 179

> > > > Under Evaluation 179

> > > > Hypersensitivity Pneumonitis 51

> > > > PF of other Causes 49

> > > > Other IIP's 44

> > > > Pulmonary Hypertension 33

> > > > Occupational Diseases 26

> > > >

> > > > So, only 30% of the patients had IPF UIP.

> > > >

> > > > I'm surprised we don't talk more here about Sarcoidosis and

> that makes

> > > > me think either they're going to their own forum and/or its

> being

> > > > underdiagnosed by many doctors. Also note that of the patients

> sent to

> > > > the ILD center approximately 10% were determined not to have

> an

> > > > ILD and

> > > > another 10% haven't been determined yet.

> > > >

> > > >

> > > >

> > >

> >

>

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Pink, The medication Lovaza is

omega 3 fatty acid..  ( Fish oils)I've been taking that for several

years.

It wasn't enough when my other medications caused more severe eye

dryness and dry mouth. That's when I added the

Biotene products and the Refresh eye products too.

Z fibriotic NSIP/05

Z 65, fibriotic NSIP/05/PA

And

“mild†PH/10/07

No,

NSIP was not self-inflicted…I never smoked!

Potter,

reader,carousel lover and MomMom to Darah and Sara 

    

“I’m

gonna be iron like a lion in Zionâ€Â  Bob Marley

Vinca

Minor-periwinkle is my flower

 

 

Joyce T Rosenberg wrote:

 

linda

the eye doctor ordered hydro tears for my dry eyes

 

besides helping my eyes, the dry mouth and dry feet

stopped too

 

then the cardiologist saw that i was on hydro tears and

said it is the same as Lovaza, so he ordered that instead because it is

also good for the heart

 

so i went from taking 4 otc gel caps, to taking 2

prescription gel caps per day

 

 

Pink Joyce R (IPF 3/06)  IFA 5/09

Pennsylvania

Donate Life

Listed 1/09 Inactive

4/09

www.transplantfund.org

From: Bruce <brucemoreland@ gmail.com>

Subject: Lumping of the diseases

To: Breathe-Support@ yahoogroups. com

Date: Saturday, January 2, 2010, 10:29 AM

 

I found it interesting to read some

more date published by the

University of Pittsburgh ILD center. Here are the patients who went to

their center from January 1-October 14, 2009.

Now, tossing out some more interesting information (at least to me) and

that is a breakdown of the patients who went to the University of

Pittsburgh ILD center from January 1-October 14 of last year.

IPF UIP 574

Sarcoidosis 502

PF Rheumatoid Condition 277

ILD Ruled Out 179

Under Evaluation 179

Hypersensitivity Pneumonitis 51

PF of other Causes 49

Other IIP's 44

Pulmonary Hypertension 33

Occupational Diseases 26

So, only 30% of the patients had IPF UIP.

I'm surprised we don't talk more here about Sarcoidosis and that makes

me think either they're going to their own forum and/or its being

underdiagnosed by many doctors. Also note that of the patients sent to

the ILD center approximately 10% were determined not to have an ILD and

another 10% haven't been determined yet.

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yes i know the lovaza is omega 3 fatty acid, so is the hydro tears

sorry you need more than the lovaza to help with the dryness

i used to get up in the middle of the night and drink and eat hard candies like crazy, nothing seemed to help at that time

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: Lumping of the diseasesTo: Breathe-Support Date: Sunday, January 3, 2010, 3:24 PM

Pink, The medication Lovaza is omega 3 fatty acid.. ( Fish oils)I've been taking that for several years.It wasn't enough when my other medications caused more severe eye dryness and dry mouth. That's when I added theBiotene products and the Refresh eye products too.

Z 65, fibriotic NSIP/05/PA

And “mild†PH/10/07

No, NSIP was not self-inflicted…I never smoked!

Potter, reader,carousel lover and MomMom to Darah and Sara

“I’m gonna be iron like a lion in Zion†Bob Marley

Vinca Minor-periwinkle is my flower

Joyce T Rosenberg wrote:

linda

the eye doctor ordered hydro tears for my dry eyes

besides helping my eyes, the dry mouth and dry feet stopped too

then the cardiologist saw that i was on hydro tears and said it is the same as Lovaza, so he ordered that instead because it is also good for the heart

so i went from taking 4 otc gel caps, to taking 2 prescription gel caps per day

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund. org

From: Bruce <brucemoreland@ gmail.com>Subject: Lumping of the diseasesTo: Breathe-Support@ yahoogroups. comDate: Saturday, January 2, 2010, 10:29 AM

I found it interesting to read some more date published by theUniversity of Pittsburgh ILD center. Here are the patients who went totheir center from January 1-October 14, 2009.Now, tossing out some more interesting information (at least to me) andthat is a breakdown of the patients who went to the University ofPittsburgh ILD center from January 1-October 14 of last year.IPF UIP 574Sarcoidosis 502PF Rheumatoid Condition 277ILD Ruled Out 179Under Evaluation 179Hypersensitivity Pneumonitis 51PF of other Causes 49Other IIP's 44Pulmonary Hypertension 33Occupational Diseases 26So, only 30% of the patients had IPF UIP.I'm surprised we don't talk more here about Sarcoidosis and that makesme think either they're going to their own forum and/or its beingunderdiagnosed by many doctors. Also note that of the patients sent tothe ILD center approximately 10% were

determined not to have an ILD andanother 10% haven't been determined yet.

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Jerry , actor, comedian and Muscular Dystrophy Association telethon leader was also diagnosed several years ago, with PF. According to CPF, has spoken many times publicly about his disease but has not yet spoken out on behalf of the cause that has stricken him so personally. CPF has asked to help give a voice to those affected by PF. He hosted his 44th year telethon Labor Day 2009 for MDA, I wonder if he made mention of his disease.

Marlon Brando died at age 80 of PF.

C_53_Familial IPF_5/09, Washington

HOPE doesn't disappoint!

To: Breathe-Support Sent: Sat, January 2, 2010 7:33:27 PMSubject: Re: Lumping of the diseases

knew about Goulet and Kineval dying from PF, didn't know they had sacoid also

knew about Mac have sarcoid and PF

there was also a singer, forget her name, don't remember if she had sarcoid too

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund. org

From: Bruce <brucemoreland@ gmail.com>Subject: Lumping of the diseasesTo: Breathe-Support@ yahoogroups. comDate: Saturday, January 2, 2010, 10:29 AM

I found it interesting to read some more date published by theUniversity of Pittsburgh ILD center. Here are the patients who went totheir center from January 1-October 14, 2009.Now, tossing out some more interesting information (at least to me) andthat is a breakdown of the patients who went to the University ofPittsburgh ILD center from January 1-October 14 of last year.IPF UIP 574Sarcoidosis 502PF Rheumatoid Condition 277ILD Ruled Out 179Under Evaluation 179Hypersensitivity Pneumonitis 51PF of other Causes 49Other IIP's 44Pulmonary Hypertension 33Occupational Diseases 26So, only 30% of the patients had IPF UIP.I'm surprised we don't talk more here about Sarcoidosis and that makesme think either they're going to their own forum and/or its beingunderdiagnosed by many doctors. Also note that of the patients sent tothe ILD center approximately 10% were

determined not to have an ILD andanother 10% haven't been determined yet.

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Share on other sites

Monday, January 4, 2010, 11:22am PST

FDA OKs quick review for Intermune drug

Wall Street gets to play with pirfenidone and lives....

Shares of InterMune fell 4 cents to $13 in morning trading.

All of the google news stories here: LINK

Also Liam Clancy's death was from IPF

Irish folk pioneer Liam Clancy dies in Cork at 74

By SHAWN POGATCHNIK (AP) – 4 days ago

DUBLIN — Irish balladeer Liam Clancy, last of the Clancy Brothers troupe whose feisty, boozy songs of old Ireland struck a sentimental chord worldwide, died Friday in a Cork hospital. He was 74.

Clancy died in his hospital bed flanked by his wife Kim and daughters Siobhan and Fiona, his manager and family said. He suffered for years against incurable pulmonary fibrosis, the same lung-destroying disease that claimed one of his older singing brothers, Bobby, in 2002. LINK

Erna

1992 bird fanciers syndrome

CAD & MI 2004

ILD 2008 NSIP 2009

Washington State

To: Breathe-Support Sent: Mon, January 4, 2010 8:03:14 PMSubject: Re: Lumping of the diseases

Jerry , actor, comedian and Muscular Dystrophy Association telethon leader was also diagnosed several years ago, with PF. According to CPF, has spoken many times publicly about his disease but has not yet spoken out on behalf of the cause that has stricken him so personally. CPF has asked to help give a voice to those affected by PF. He hosted his 44th year telethon Labor Day 2009 for MDA, I wonder if he made mention of his disease.

Marlon Brando died at age 80 of PF.

C_53_Familial IPF_5/09, Washington

HOPE doesn't disappoint!

From: Joyce T Rosenberg <pinkrockybeach@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Sat, January 2, 2010 7:33:27 PMSubject: Re: Lumping of the diseases

knew about Goulet and Kineval dying from PF, didn't know they had sacoid also

knew about Mac have sarcoid and PF

there was also a singer, forget her name, don't remember if she had sarcoid too

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund. org

From: Bruce <brucemoreland@ gmail.com>Subject: Lumping of the diseasesTo: Breathe-Support@ yahoogroups. comDate: Saturday, January 2, 2010, 10:29 AM

I found it interesting to read some more date published by theUniversity of Pittsburgh ILD center. Here are the patients who went totheir center from January 1-October 14, 2009.Now, tossing out some more interesting information (at least to me) andthat is a breakdown of the patients who went to the University ofPittsburgh ILD center from January 1-October 14 of last year.IPF UIP 574Sarcoidosis 502PF Rheumatoid Condition 277ILD Ruled Out 179Under Evaluation 179Hypersensitivity Pneumonitis 51PF of other Causes 49Other IIP's 44Pulmonary Hypertension 33Occupational Diseases 26So, only 30% of the patients had IPF UIP.I'm surprised we don't talk more here about Sarcoidosis and that makesme think either they're going to their own forum and/or its beingunderdiagnosed by many doctors. Also note that of the patients sent tothe ILD center approximately 10% were

determined not to have an ILD andanother 10% haven't been determined yet.

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Share on other sites

Jerry has not spoken out on behalf of the cause and hasn't spoken much in any form about the disease in years. He was diagnosed between 1999 and 2001 depending on the source and gained tremendous weight on prednisone then entered a hospital to be weaned from Prednisone over a 90 day period in 2004. The last published information of significance regarding that was at that time. However, sometime thereafter the talk of the PF got silent and the talk of his breathing difficulties as well. There were rumors, but never were any confirmed, that he even went to France and had a lung transplant. When asked about shortness of breath one year, he snapped back as to not answering because it wouldn't benefit his kids. Of course, he's never disclosed why he became involved with MDA. His publicist stated:The comedian chose to undergo a withdrawal from the prednisone after

the condition of his lungs showed marked improvement, she said in

November. A case of diabetes linked to the steroid also abated as he

came off the drug, she said.

So, regardless, he's hardly been a supporter of any public awareness of PF. Now, either he was cured miraculously or never had PF or had a transplant or had a form which responded to Prednisone and hasn't come back or who knows. He has never mentioned PF on his telethon but that would be understandable regardless so as not to detract from the cause of MDA I guess. However, he doesn't discuss it in interviews or other settings either. > >>>>>> >>>>>> >>>>>>From: Bruce <brucemoreland@ gmail.com>> >>>>>>Subject: Lumping of the diseases> >>>>>>To: Breathe-Support@ yahoogroups. com> >>>>>>Date: Saturday, January 2, 2010, 10:29 AM> >>>>>>> >>>>>>> >>>>>>Â > >>>>>>I found it interesting to read some more date published by the> >>>>>>University of Pittsburgh ILD center. Here are the patients who went to> >>>>>>their center from January 1-October 14, 2009.> >>>>>>> >>>>>>Now, tossing out some more interesting information (at least to me) and> >>>>>>that is a breakdown of the patients who went to the University of> >>>>>>Pittsburgh ILD center from January 1-October 14 of last year.> >>>>>>> >>>>>>IPF UIP 574> >>>>>>Sarcoidosis 502> >>>>>>PF Rheumatoid Condition 277> >>>>>>ILD Ruled Out 179> >>>>>>Under Evaluation 179> >>>>>>Hypersensitivity Pneumonitis 51> >>>>>>PF of other Causes 49> >>>>>>Other IIP's 44> >>>>>>Pulmonary Hypertension 33> >>>>>>Occupational Diseases 26> >>>>>>> >>>>>>So, only 30% of the patients had IPF UIP.> >>>>>>> >>>>>>I'm surprised we don't talk more here about Sarcoidosis and that makes> >>>>>>me think either they're going to their own forum and/or its being> >>>>>>underdiagnosed by many doctors. Also note that of the patients sent to> >>>>>>the ILD center approximately 10% were determined not to have an ILD and> >>>>>>another 10% haven't been determined yet.> >>>>>>> >>>>>> > >>>>> > >>> > >>

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very interesting....

C_53_Familial IPF_5/09, Washington

HOPE doesn't disappoint!

To: Breathe-Support Sent: Mon, January 4, 2010 9:01:20 PMSubject: Re: Lumping of the diseases

Jerry has not spoken out on behalf of the cause and hasn't spoken much in any form about the disease in years. He was diagnosed between 1999 and 2001 depending on the source and gained tremendous weight on prednisone then entered a hospital to be weaned from Prednisone over a 90 day period in 2004. The last published information of significance regarding that was at that time. However, sometime thereafter the talk of the PF got silent and the talk of his breathing difficulties as well. There were rumors, but never were any confirmed, that he even went to France and had a lung transplant. When asked about shortness of breath one year, he snapped back as to not answering because it wouldn't benefit his kids. Of course, he's never disclosed why he became involved with MDA. His publicist stated:The comedian chose to undergo a withdrawal from the prednisone after the condition of his lungs showed marked improvement, she

said in November. A case of diabetes linked to the steroid also abated as he came off the drug, she said. So, regardless, he's hardly been a supporter of any public awareness of PF. Now, either he was cured miraculously or never had PF or had a transplant or had a form which responded to Prednisone and hasn't come back or who knows. He has never mentioned PF on his telethon but that would be understandable regardless so as not to detract from the cause of MDA I guess. However, he doesn't discuss it in interviews or other settings either. > >>>>>> >>>>>> >>>>>>From: Bruce <brucemoreland@ gmail.com>> >>>>>>Subject: Lumping of the diseases> >>>>>>To: Breathe-Support@ yahoogroups. com> >>>>>>Date: Saturday, January 2, 2010, 10:29 AM> >>>>>>> >>>>>>> >>>>>>Â > >>>>>>I found it interesting to read some more date published by the>

>>>>>>University of Pittsburgh ILD center. Here are the patients who went to> >>>>>>their center from January 1-October 14, 2009.> >>>>>>> >>>>>>Now, tossing out some more interesting information (at least to me) and> >>>>>>that is a breakdown of the patients who went to the University of> >>>>>>Pittsburgh ILD center from January 1-October 14 of last year.> >>>>>>> >>>>>>IPF UIP 574> >>>>>>Sarcoidosis 502> >>>>>>PF Rheumatoid Condition 277> >>>>>>ILD Ruled Out 179> >>>>>>Under Evaluation 179> >>>>>>Hypersensitivity Pneumonitis 51> >>>>>>PF of other Causes 49> >>>>>>Other IIP's 44>

>>>>>>Pulmonary Hypertension 33> >>>>>>Occupational Diseases 26> >>>>>>> >>>>>>So, only 30% of the patients had IPF UIP.> >>>>>>> >>>>>>I'm surprised we don't talk more here about Sarcoidosis and that makes> >>>>>>me think either they're going to their own forum and/or its being> >>>>>>underdiagnosed by many doctors. Also note that of the patients sent to> >>>>>>the ILD center approximately 10% were determined not to have an ILD and> >>>>>>another 10% haven't been determined yet.> >>>>>>> >>>>>> > >>>>> > >>> > >>

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Erna

I have no idea what you're trying to imply but a couple of facts. First,

Pirfenidone was orphaned long ago and always scheduled for a fast track,

typically six months or so. The longest delay was their delay in the

submission, probably impacted some point by the less than stellar

results of the clinical trials.

Second, as to Wall Street playing with Pirfenidone and lives, I think

the truth is that Wall Street has been more supportive of Intermune than

most companies ever expect. They supported them through criminal charges

resulting in conviction of the previous CEO based on actions of his

while heading Intermune and through law suits. They have supported a

company that has only one product available for sale and very few sales

of it. They have poured millions into a company with virtually no

revenues and provided more each time Intermune solicited funds.

Third, as to Pirfenidone saving lives, there is really no evidence

whatsoever as to that. The most upbeat evidence is that is slows the

progression of IPF for some period of time. At 36 weeks there was some

advantage of the Pirfenidone group versus placebo of patients in the

trial, who were those with very mild IPF. At somewhere between 72 and 96

weeks, that no longer appeared the case and the death rates were

virtually identical.

Many millions of dollars have been invested in Intermune by Wall Street

and other investors and they've received no return at all on the

investment nor been shown any real prospects of return in the near

future. The trials were disappointing although I do still expect

approval simply because they can lobby that there is nothing else

available.

So, maybe I'm missing something as to what you're trying to say about

Wall Street playing with lives. Intermune may be a different story.

Certainly many of those who were given Actimmune off label to treat

their PF and suffered the consequences would have an opinion on that.

As of September 30, 2009, Investors (Wall Street and others) had

contributed more than $928,000,000 (yes $928 Million) to Intermune (the

developers of Pirfenidone) and Intermune had losses at that point of

$887 Million to date. I'm amazed anyone would pay $13 per share based on

those numbers.

> >>>>>

> >>>>>

> >>>>>>From: Bruce <brucemoreland@ gmail.com>

> >>>>>>Subject: Lumping of the diseases

> >>>>>>To: Breathe-Support@ yahoogroups. com

> >>>>>>Date: Saturday, January 2, 2010, 10:29 AM

> >>>>>>

> >>>>>>

> >>>>>>Â

> >>>>>>I found it interesting to read some more date published by the

> >>>>>>University of Pittsburgh ILD center. Here are the patients who

went to

> >>>>>>their center from January 1-October 14, 2009.

> >>>>>>

> >>>>>>Now, tossing out some more interesting information (at least to

me) and

> >>>>>>that is a breakdown of the patients who went to the University

of

> >>>>>>Pittsburgh ILD center from January 1-October 14 of last year.

> >>>>>>

> >>>>>>IPF UIP 574

> >>>>>>Sarcoidosis 502

> >>>>>>PF Rheumatoid Condition 277

> >>>>>>ILD Ruled Out 179

> >>>>>>Under Evaluation 179

> >>>>>>Hypersensitivity Pneumonitis 51

> >>>>>>PF of other Causes 49

> >>>>>>Other IIP's 44

> >>>>>>Pulmonary Hypertension 33

> >>>>>>Occupational Diseases 26

> >>>>>>

> >>>>>>So, only 30% of the patients had IPF UIP.

> >>>>>>

> >>>>>>I'm surprised we don't talk more here about Sarcoidosis and that

makes

> >>>>>>me think either they're going to their own forum and/or its

being

> >>>>>>underdiagnosed by many doctors. Also note that of the patients

sent to

> >>>>>>the ILD center approximately 10% were determined not to have an

ILD and

> >>>>>>another 10% haven't been determined yet.

> >>>>>>

> >>>>>>

> >>>>>

> >>>

> >

>

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i wonder how many years Liam Clancy knew that he had pulmonary fibrosis

the fact that he was 74 years old gives me hope since i am only 62

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: Lumping of the diseasesTo: Breathe-Support Date: Monday, January 4, 2010, 11:23 PM

Monday, January 4, 2010, 11:22am PST

FDA OKs quick review for Intermune drug

Wall Street gets to play with pirfenidone and lives....

Shares of InterMune fell 4 cents to $13 in morning trading.

All of the google news stories here: LINK

Also Liam Clancy's death was from IPF

Irish folk pioneer Liam Clancy dies in Cork at 74

By SHAWN POGATCHNIK (AP) – 4 days ago

DUBLIN — Irish balladeer Liam Clancy, last of the Clancy Brothers troupe whose feisty, boozy songs of old Ireland struck a sentimental chord worldwide, died Friday in a Cork hospital. He was 74.

Clancy died in his hospital bed flanked by his wife Kim and daughters Siobhan and Fiona, his manager and family said. He suffered for years against incurable pulmonary fibrosis, the same lung-destroying disease that claimed one of his older singing brothers, Bobby, in 2002. LINK

Erna

1992 bird fanciers syndrome

CAD & MI 2004

ILD 2008 NSIP 2009

Washington State

From: worth <hope2thend (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Mon, January 4, 2010 8:03:14 PMSubject: Re: Lumping of the diseases

Jerry , actor, comedian and Muscular Dystrophy Association telethon leader was also diagnosed several years ago, with PF. According to CPF, has spoken many times publicly about his disease but has not yet spoken out on behalf of the cause that has stricken him so personally. CPF has asked to help give a voice to those affected by PF. He hosted his 44th year telethon Labor Day 2009 for MDA, I wonder if he made mention of his disease.

Marlon Brando died at age 80 of PF.

C_53_Familial IPF_5/09, Washington

HOPE doesn't disappoint!

From: Joyce T Rosenberg <pinkrockybeach@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Sat, January 2, 2010 7:33:27 PMSubject: Re: Lumping of the diseases

knew about Goulet and Kineval dying from PF, didn't know they had sacoid also

knew about Mac have sarcoid and PF

there was also a singer, forget her name, don't remember if she had sarcoid too

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund. org

From: Bruce <brucemoreland@ gmail.com>Subject: Lumping of the diseasesTo: Breathe-Support@ yahoogroups. comDate: Saturday, January 2, 2010, 10:29 AM

I found it interesting to read some more date published by theUniversity of Pittsburgh ILD center. Here are the patients who went totheir center from January 1-October 14, 2009.Now, tossing out some more interesting information (at least to me) andthat is a breakdown of the patients who went to the University ofPittsburgh ILD center from January 1-October 14 of last year.IPF UIP 574Sarcoidosis 502PF Rheumatoid Condition 277ILD Ruled Out 179Under Evaluation 179Hypersensitivity Pneumonitis 51PF of other Causes 49Other IIP's 44Pulmonary Hypertension 33Occupational Diseases 26So, only 30% of the patients had IPF UIP.I'm surprised we don't talk more here about Sarcoidosis and that makesme think either they're going to their own forum and/or its beingunderdiagnosed by many doctors. Also note that of the patients sent tothe ILD center approximately 10% were

determined not to have an ILD andanother 10% haven't been determined yet.

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Bruce

i wonder is Erna is looking for the positive in intermune because she is new to the disease and looking for anything positive

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: Lumping of the diseasesTo: Breathe-Support Date: Tuesday, January 5, 2010, 12:32 AM

ErnaI have no idea what you're trying to imply but a couple of facts. First,Pirfenidone was orphaned long ago and always scheduled for a fast track,typically six months or so. The longest delay was their delay in thesubmission, probably impacted some point by the less than stellarresults of the clinical trials.Second, as to Wall Street playing with Pirfenidone and lives, I thinkthe truth is that Wall Street has been more supportive of Intermune thanmost companies ever expect. They supported them through criminal chargesresulting in conviction of the previous CEO based on actions of hiswhile heading Intermune and through law suits. They have supported acompany that has only one product available for sale and very few salesof it. They have poured millions into a company with virtually norevenues and provided more each time Intermune solicited funds.Third, as to Pirfenidone saving

lives, there is really no evidencewhatsoever as to that. The most upbeat evidence is that is slows theprogression of IPF for some period of time. At 36 weeks there was someadvantage of the Pirfenidone group versus placebo of patients in thetrial, who were those with very mild IPF. At somewhere between 72 and 96weeks, that no longer appeared the case and the death rates werevirtually identical.Many millions of dollars have been invested in Intermune by Wall Streetand other investors and they've received no return at all on theinvestment nor been shown any real prospects of return in the nearfuture. The trials were disappointing although I do still expectapproval simply because they can lobby that there is nothing elseavailable.So, maybe I'm missing something as to what you're trying to say aboutWall Street playing with lives. Intermune may be a different story.Certainly many of those who

were given Actimmune off label to treattheir PF and suffered the consequences would have an opinion on that.As of September 30, 2009, Investors (Wall Street and others) hadcontributed more than $928,000,000 (yes $928 Million) to Intermune (thedevelopers of Pirfenidone) and Intermune had losses at that point of$887 Million to date. I'm amazed anyone would pay $13 per share based onthose numbers.> >>>>>> >>>>>> >>>>>>From: Bruce <brucemoreland@ gmail.com>>

>>>>>>Subject: Lumping of the diseases> >>>>>>To: Breathe-Support@ yahoogroups. com> >>>>>>Date: Saturday, January 2, 2010, 10:29 AM> >>>>>>> >>>>>>> >>>>>>Â> >>>>>>I found it interesting to read some more date published by the> >>>>>>University of Pittsburgh ILD center. Here are the patients whowent to> >>>>>>their center from January 1-October 14, 2009.> >>>>>>> >>>>>>Now, tossing out some more interesting information (at least tome) and> >>>>>>that is a breakdown of the patients who went to the Universityof> >>>>>>Pittsburgh ILD center from January 1-October 14 of last year.>

>>>>>>> >>>>>>IPF UIP 574> >>>>>>Sarcoidosis 502> >>>>>>PF Rheumatoid Condition 277> >>>>>>ILD Ruled Out 179> >>>>>>Under Evaluation 179> >>>>>>Hypersensitiv ity Pneumonitis 51> >>>>>>PF of other Causes 49> >>>>>>Other IIP's 44> >>>>>>Pulmonary Hypertension 33> >>>>>>Occupational Diseases 26> >>>>>>> >>>>>>So, only 30% of the patients had IPF UIP.> >>>>>>> >>>>>>I'm surprised we don't talk more here about Sarcoidosis and thatmakes> >>>>>>me think either they're going to their own forum and/or itsbeing> >>>>>>underdiagnose d by many

doctors. Also note that of the patientssent to> >>>>>>the ILD center approximately 10% were determined not to have anILD and> >>>>>>another 10% haven't been determined yet.> >>>>>>> >>>>>>> >>>>>> >>>> >>

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Bruce,When I read things about this drug it becomes so frustrating because it all comes down to is that nothing works. Yes, many have shown improvement on some drugs but others have no option but hope. Seems almost sad. I was told that the UIP that I have that nothing can help so I won't be given anything. I should of said how do you know that.it won't do some good for me but I didn't. After reading all of the posts every day I wonder even more.To: Breathe-Support Sent: Tue, January 5, 2010 12:32:35 AMSubject: Re: Lumping of the diseases

Erna

I have no idea what you're trying to imply but a couple of facts. First,

Pirfenidone was orphaned long ago and always scheduled for a fast track,

typically six months or so. The longest delay was their delay in the

submission, probably impacted some point by the less than stellar

results of the clinical trials.

Second, as to Wall Street playing with Pirfenidone and lives, I think

the truth is that Wall Street has been more supportive of Intermune than

most companies ever expect. They supported them through criminal charges

resulting in conviction of the previous CEO based on actions of his

while heading Intermune and through law suits. They have supported a

company that has only one product available for sale and very few sales

of it. They have poured millions into a company with virtually no

revenues and provided more each time Intermune solicited funds.

Third, as to Pirfenidone saving lives, there is really no evidence

whatsoever as to that. The most upbeat evidence is that is slows the

progression of IPF for some period of time. At 36 weeks there was some

advantage of the Pirfenidone group versus placebo of patients in the

trial, who were those with very mild IPF. At somewhere between 72 and 96

weeks, that no longer appeared the case and the death rates were

virtually identical.

Many millions of dollars have been invested in Intermune by Wall Street

and other investors and they've received no return at all on the

investment nor been shown any real prospects of return in the near

future. The trials were disappointing although I do still expect

approval simply because they can lobby that there is nothing else

available.

So, maybe I'm missing something as to what you're trying to say about

Wall Street playing with lives. Intermune may be a different story.

Certainly many of those who were given Actimmune off label to treat

their PF and suffered the consequences would have an opinion on that.

As of September 30, 2009, Investors (Wall Street and others) had

contributed more than $928,000,000 (yes $928 Million) to Intermune (the

developers of Pirfenidone) and Intermune had losses at that point of

$887 Million to date. I'm amazed anyone would pay $13 per share based on

those numbers.

> >>>>>

> >>>>>

> >>>>>>From: Bruce <brucemoreland@ gmail.com>

> >>>>>>Subject: Lumping of the diseases

> >>>>>>To: Breathe-Support@ yahoogroups. com

> >>>>>>Date: Saturday, January 2, 2010, 10:29 AM

> >>>>>>

> >>>>>>

> >>>>>>Â

> >>>>>>I found it interesting to read some more date published by the

> >>>>>>University of Pittsburgh ILD center. Here are the patients who

went to

> >>>>>>their center from January 1-October 14, 2009.

> >>>>>>

> >>>>>>Now, tossing out some more interesting information (at least to

me) and

> >>>>>>that is a breakdown of the patients who went to the University

of

> >>>>>>Pittsburgh ILD center from January 1-October 14 of last year.

> >>>>>>

> >>>>>>IPF UIP 574

> >>>>>>Sarcoidosis 502

> >>>>>>PF Rheumatoid Condition 277

> >>>>>>ILD Ruled Out 179

> >>>>>>Under Evaluation 179

> >>>>>>Hypersensitiv ity Pneumonitis 51

> >>>>>>PF of other Causes 49

> >>>>>>Other IIP's 44

> >>>>>>Pulmonary Hypertension 33

> >>>>>>Occupational Diseases 26

> >>>>>>

> >>>>>>So, only 30% of the patients had IPF UIP.

> >>>>>>

> >>>>>>I'm surprised we don't talk more here about Sarcoidosis and that

makes

> >>>>>>me think either they're going to their own forum and/or its

being

> >>>>>>underdiagnose d by many doctors. Also note that of the patients

sent to

> >>>>>>the ILD center approximately 10% were determined not to have an

ILD and

> >>>>>>another 10% haven't been determined yet.

> >>>>>>

> >>>>>>

> >>>>>

> >>>

> >

>

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Pink

I suspect so but blaming Wall Street for playing with Pirfenidone or

lives seemed to make no sense. Furthermore, Pirfenidone is not tested

and will not be approved for her condition as she has NSIP and it has

only been for IPF. There are already treatments for NSIP.

> > >>>>>

> > >>>>>

> > >>>>>>From: Bruce <brucemoreland@ gmail.com>

> > >>>>>>Subject: Lumping of the diseases

> > >>>>>>To: Breathe-Support@ yahoogroups. com

> > >>>>>>Date: Saturday, January 2, 2010, 10:29 AM

> > >>>>>>

> > >>>>>>

> > >>>>>>Â

> > >>>>>>I found it interesting to read some more date published by the

> > >>>>>>University of Pittsburgh ILD center. Here are the patients who

> went to

> > >>>>>>their center from January 1-October 14, 2009.

> > >>>>>>

> > >>>>>>Now, tossing out some more interesting information (at least

to

> me) and

> > >>>>>>that is a breakdown of the patients who went to the University

> of

> > >>>>>>Pittsburgh ILD center from January 1-October 14 of last year.

> > >>>>>>

> > >>>>>>IPF UIP 574

> > >>>>>>Sarcoidosis 502

> > >>>>>>PF Rheumatoid Condition 277

> > >>>>>>ILD Ruled Out 179

> > >>>>>>Under Evaluation 179

> > >>>>>>Hypersensitiv ity Pneumonitis 51

> > >>>>>>PF of other Causes 49

> > >>>>>>Other IIP's 44

> > >>>>>>Pulmonary Hypertension 33

> > >>>>>>Occupational Diseases 26

> > >>>>>>

> > >>>>>>So, only 30% of the patients had IPF UIP.

> > >>>>>>

> > >>>>>>I'm surprised we don't talk more here about Sarcoidosis and

that

> makes

> > >>>>>>me think either they're going to their own forum and/or its

> being

> > >>>>>>underdiagnose d by many doctors. Also note that of the

patients

> sent to

> > >>>>>>the ILD center approximately 10% were determined not to have

an

> ILD and

> > >>>>>>another 10% haven't been determined yet.

> > >>>>>>

> > >>>>>>

> > >>>>>

> > >>>

> > >

> >

>

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Dr. Raghu has long been a proponent of Pirfenidone as he has been a

consultant and speaker for Intermune in addition to his involvement in

the trials. He was also a strong proponent of Actimmune as well. Now, he

was able to prescribe Actimmune off-label as did others, but thats not

possible for Pirfenidone since it isn't yet approved for any condition.

When trying meds don't forget the side effects in the decision equation

is all I would say. Most importantly, don't try an unproven med for a

condition for which a proven one exists. Fully informed as to the facts,

then any choice an individual makes is fine. The influences on doctors

is a part of that as well too. For instance, on Actimmune, Intermune had

a sales force encouraging its use widely for PF even though it wasn't

approved for such. Now, thats a common practice.

A simple example of how complex it can become. Is Nexium really better

than the other PPI's enough to justify my doctors insisting I use it and

not consider Prilosec? One side would say absolutely. The other side

would say its all Astra Zeneca's manipulation and influence. Either way

the only test showing such is one run by Astra Zeneca and comparing non

equal dosages. One doctor believes one way and another the opposite. So,

as a patient, we have to make a choice sometimes.

I expect Pirfenidone to be widely prescribed by some doctors for IPF. I

just hope its not prescribed carelessly for other forms or possible

other forms of PF where proven treatments do exist and where it hasn't

even been tested. I don't think those expert in ILD's are likely to do

that but I do fear the less expert doctors throughout the country may

very well, when prednisone or imuran or cellcept or other meds are known

to help certain ILD's.

> > >>>>>

> > >>>>>

> > >>>>>>From: Bruce <brucemoreland@ gmail.com>

> > >>>>>>Subject: Lumping of the diseases

> > >>>>>>To: Breathe-Support@ yahoogroups. com

> > >>>>>>Date: Saturday, January 2, 2010, 10:29 AM

> > >>>>>>

> > >>>>>>

> > >>>>>>Â

> > >>>>>>I found it interesting to read some more date published by the

> > >>>>>>University of Pittsburgh ILD center. Here are the patients who

> went to

> > >>>>>>their center from January 1-October 14, 2009.

> > >>>>>>

> > >>>>>>Now, tossing out some more interesting information (at least

to

> me) and

> > >>>>>>that is a breakdown of the patients who went to the University

> of

> > >>>>>>Pittsburgh ILD center from January 1-October 14 of last year.

> > >>>>>>

> > >>>>>>IPF UIP 574

> > >>>>>>Sarcoidosis 502

> > >>>>>>PF Rheumatoid Condition 277

> > >>>>>>ILD Ruled Out 179

> > >>>>>>Under Evaluation 179

> > >>>>>>Hypersensitiv ity Pneumonitis 51

> > >>>>>>PF of other Causes 49

> > >>>>>>Other IIP's 44

> > >>>>>>Pulmonary Hypertension 33

> > >>>>>>Occupational Diseases 26

> > >>>>>>

> > >>>>>>So, only 30% of the patients had IPF UIP.

> > >>>>>>

> > >>>>>>I'm surprised we don't talk more here about Sarcoidosis and

that

> makes

> > >>>>>>me think either they're going to their own forum and/or its

> being

> > >>>>>>underdiagnose d by many doctors. Also note that of the

patients

> sent to

> > >>>>>>the ILD center approximately 10% were determined not to have

an

> ILD and

> > >>>>>>another 10% haven't been determined yet.

> > >>>>>>

> > >>>>>>

> > >>>>>

> > >>>

> > >

> >

>

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Share on other sites

Dr. Raghu has been involved with trials of Pirfenidone and published on

it starting in 1999. The University of Washington published results of a

trial of 54 patients in 1999 and he was one who signed that study. He

actually was involved earlier as I've found articles published as early

as March, 1997. There were three patients involved in testing here at

UTSW in the 90's. I think we sometimes lose sight of how long some of

these drugs have been around and how many clinical trials for how many

different conditions they have been through.

> > > >>>>>

> > > >>>>>

> > > >>>>>>From: Bruce <brucemoreland@ gmail.com>

> > > >>>>>>Subject: Lumping of the diseases

> > > >>>>>>To: Breathe-Support@ yahoogroups. com

> > > >>>>>>Date: Saturday, January 2, 2010, 10:29 AM

> > > >>>>>>

> > > >>>>>>

> > > >>>>>>Â

> > > >>>>>>I found it interesting to read some more date published by

the

> > > >>>>>>University of Pittsburgh ILD center. Here are the patients

who

> > went to

> > > >>>>>>their center from January 1-October 14, 2009.

> > > >>>>>>

> > > >>>>>>Now, tossing out some more interesting information (at least

> to

> > me) and

> > > >>>>>>that is a breakdown of the patients who went to the

University

> > of

> > > >>>>>>Pittsburgh ILD center from January 1-October 14 of last

year.

> > > >>>>>>

> > > >>>>>>IPF UIP 574

> > > >>>>>>Sarcoidosis 502

> > > >>>>>>PF Rheumatoid Condition 277

> > > >>>>>>ILD Ruled Out 179

> > > >>>>>>Under Evaluation 179

> > > >>>>>>Hypersensitiv ity Pneumonitis 51

> > > >>>>>>PF of other Causes 49

> > > >>>>>>Other IIP's 44

> > > >>>>>>Pulmonary Hypertension 33

> > > >>>>>>Occupational Diseases 26

> > > >>>>>>

> > > >>>>>>So, only 30% of the patients had IPF UIP.

> > > >>>>>>

> > > >>>>>>I'm surprised we don't talk more here about Sarcoidosis and

> that

> > makes

> > > >>>>>>me think either they're going to their own forum and/or its

> > being

> > > >>>>>>underdiagnose d by many doctors. Also note that of the

> patients

> > sent to

> > > >>>>>>the ILD center approximately 10% were determined not to have

> an

> > ILD and

> > > >>>>>>another 10% haven't been determined yet.

> > > >>>>>>

> > > >>>>>>

> > > >>>>>

> > > >>>

> > > >

> > >

> >

>

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i agree with in that people should try something to see if it will work

i do believe there is no cure, but there is treatment to help keep you more comfortable and if the issue is inflammation, you need to decrease the inflamation

i was told by my pulmonary that I am one of the rare people for whom increased doses of prednisone worked and am responding to Cellcept

the longer it works, the longer i can put off a transplant with all of the rejection and infection issues that scare me

call your doc and tell him how you feel and that you want to try something

by the way, are you seeing a specialist in ILD's

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: Re: Lumping of the diseasesTo: Breathe-Support Date: Tuesday, January 5, 2010, 11:03 PM

,

When facing a terminal illness I believe any type of treatment is worth a try, but then that's just me, and for your docs to say "nothing" will help you is just wrong. You should definitely speak up and ask to try a medication if that's what you want and its an available treatment for your disease.

I just don't think these drugs are created to be totally fruitless, they must work on someone! I know its probably a small percentage or dependent on other factors, but the bottom line is we just don't know how our bodies will respond unless we take that risk!

I plan to talk to Dr. Raghu about Pirfendone when I see him in February. If he thinks its worth a try then I want to try it. But then, that's just me.

C_53_Familial IPF_5/09, Washington

HOPE doesn't disappoint!

From: Terry Oettinger <iltopaint (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Tue, January 5, 2010 6:19:22 AMSubject: Re: Re: Lumping of the diseases

Bruce,When I read things about this drug it becomes so frustrating because it all comes down to is that nothing works. Yes, many have shown improvement on some drugs but others have no option but hope. Seems almost sad. I was told that the UIP that I have that nothing can help so I won't be given anything. I should of said how do you know that.it won't do some good for me but I didn't. After reading all of the posts every day I wonder even more.

From: Bruce <brucemoreland@ gmail.com>To: Breathe-Support@ yahoogroups. comSent: Tue, January 5, 2010 12:32:35 AMSubject: Re: Lumping of the diseases

ErnaI have no idea what you're trying to imply but a couple of facts. First,Pirfenidone was orphaned long ago and always scheduled for a fast track,typically six months or so. The longest delay was their delay in thesubmission, probably impacted some point by the less than stellarresults of the clinical trials.Second, as to Wall Street playing with Pirfenidone and lives, I thinkthe truth is that Wall Street has been more supportive of Intermune thanmost companies ever expect. They supported them through criminal chargesresulting in conviction of the previous CEO based on actions of hiswhile heading Intermune and through law suits. They have supported acompany that has only one product available for sale and very few salesof it. They have poured millions into a company with virtually norevenues and provided more each time Intermune solicited funds.Third, as to Pirfenidone saving

lives, there is really no evidencewhatsoever as to that. The most upbeat evidence is that is slows theprogression of IPF for some period of time. At 36 weeks there was someadvantage of the Pirfenidone group versus placebo of patients in thetrial, who were those with very mild IPF. At somewhere between 72 and 96weeks, that no longer appeared the case and the death rates werevirtually identical.Many millions of dollars have been invested in Intermune by Wall Streetand other investors and they've received no return at all on theinvestment nor been shown any real prospects of return in the nearfuture. The trials were disappointing although I do still expectapproval simply because they can lobby that there is nothing elseavailable.So, maybe I'm missing something as to what you're trying to say aboutWall Street playing with lives. Intermune may be a different story.Certainly many of those who

were given Actimmune off label to treattheir PF and suffered the consequences would have an opinion on that.As of September 30, 2009, Investors (Wall Street and others) hadcontributed more than $928,000,000 (yes $928 Million) to Intermune (thedevelopers of Pirfenidone) and Intermune had losses at that point of$887 Million to date. I'm amazed anyone would pay $13 per share based onthose numbers.> >>>>>> >>>>>> >>>>>>From: Bruce

<brucemoreland@ gmail.com>> >>>>>>Subject: Lumping of the diseases> >>>>>>To: Breathe-Support@ yahoogroups. com> >>>>>>Date: Saturday, January 2, 2010, 10:29 AM> >>>>>>> >>>>>>> >>>>>>Â> >>>>>>I found it interesting to read some more date published by the> >>>>>>University of Pittsburgh ILD center. Here are the patients whowent to> >>>>>>their center from January 1-October 14, 2009.> >>>>>>> >>>>>>Now, tossing out some more interesting information (at least tome) and> >>>>>>that is a breakdown of the patients who went to the Universityof>

>>>>>>Pittsburgh ILD center from January 1-October 14 of last year.> >>>>>>> >>>>>>IPF UIP 574> >>>>>>Sarcoidosis 502> >>>>>>PF Rheumatoid Condition 277> >>>>>>ILD Ruled Out 179> >>>>>>Under Evaluation 179> >>>>>>Hypersensitiv ity Pneumonitis 51> >>>>>>PF of other Causes 49> >>>>>>Other IIP's 44> >>>>>>Pulmonary Hypertension 33> >>>>>>Occupational Diseases 26> >>>>>>> >>>>>>So, only 30% of the patients had IPF UIP.> >>>>>>> >>>>>>I'm surprised we don't talk more here about Sarcoidosis and thatmakes> >>>>>>me think either they're going to

their own forum and/or itsbeing> >>>>>>underdiagnose d by many doctors. Also note that of the patientssent to> >>>>>>the ILD center approximately 10% were determined not to have anILD and> >>>>>>another 10% haven't been determined yet.> >>>>>>> >>>>>>> >>>>>> >>>> >>

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Bruce

i have heard people talk about Nexium vs the other PPI's

some people say one brand works better for them than another brand

insurance stopped paying for Nexium, prilosec works, so i am on the generic -- omerprazole

on the other hand

i was on Diovan for blood pressure, insurance stopped paying for that

family doc put me on Altace -- gave me a sample to start with

noticed an increase in cough

called pulmonary

they asked what else was going on, any changes?

told them about Altace

they told me that Altace can cause increase in cough

informed family doc

docs did the required paperwork to get me back on Diovan

insurance approved Diovan

added Altace to list of allergies

wish there were a substitute for prednisone, but since it helps, i deal with the side effects,

besides, after transplant, i would be on prednisone anyway

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: Lumping of the diseasesTo: Breathe-Support Date: Tuesday, January 5, 2010, 11:32 PM

Dr. Raghu has long been a proponent of Pirfenidone as he has been aconsultant and speaker for Intermune in addition to his involvement inthe trials. He was also a strong proponent of Actimmune as well. Now, hewas able to prescribe Actimmune off-label as did others, but thats notpossible for Pirfenidone since it isn't yet approved for any condition.When trying meds don't forget the side effects in the decision equationis all I would say. Most importantly, don't try an unproven med for acondition for which a proven one exists. Fully informed as to the facts,then any choice an individual makes is fine. The influences on doctorsis a part of that as well too. For instance, on Actimmune, Intermune hada sales force encouraging its use widely for PF even though it wasn'tapproved for such. Now, thats a common practice.A simple example of how complex it can become. Is Nexium really

betterthan the other PPI's enough to justify my doctors insisting I use it andnot consider Prilosec? One side would say absolutely. The other sidewould say its all Astra Zeneca's manipulation and influence. Either waythe only test showing such is one run by Astra Zeneca and comparing nonequal dosages. One doctor believes one way and another the opposite. So,as a patient, we have to make a choice sometimes.I expect Pirfenidone to be widely prescribed by some doctors for IPF. Ijust hope its not prescribed carelessly for other forms or possibleother forms of PF where proven treatments do exist and where it hasn'teven been tested. I don't think those expert in ILD's are likely to dothat but I do fear the less expert doctors throughout the country mayvery well, when prednisone or imuran or cellcept or other meds are knownto help certain ILD's.> > >>>>>> > >>>>>> > >>>>>>From: Bruce

<brucemoreland@ gmail.com>> > >>>>>>Subject: Lumping of the diseases> > >>>>>>To: Breathe-Support@ yahoogroups. com> > >>>>>>Date: Saturday, January 2, 2010, 10:29 AM> > >>>>>>> > >>>>>>> > >>>>>>Â> > >>>>>>I found it interesting to read some more date published by the> > >>>>>>University of Pittsburgh ILD center. Here are the patients who> went to> > >>>>>>their center from January 1-October 14, 2009.> > >>>>>>> > >>>>>>Now, tossing out some more interesting information (at leastto> me) and> > >>>>>>that is a breakdown of the patients who went to the University>

of> > >>>>>>Pittsburgh ILD center from January 1-October 14 of last year.> > >>>>>>> > >>>>>>IPF UIP 574> > >>>>>>Sarcoidosis 502> > >>>>>>PF Rheumatoid Condition 277> > >>>>>>ILD Ruled Out 179> > >>>>>>Under Evaluation 179> > >>>>>>Hypersensitiv ity Pneumonitis 51> > >>>>>>PF of other Causes 49> > >>>>>>Other IIP's 44> > >>>>>>Pulmonary Hypertension 33> > >>>>>>Occupational Diseases 26> > >>>>>>> > >>>>>>So, only 30% of the patients had IPF UIP.> > >>>>>>> > >>>>>>I'm surprised we don't talk more here about

Sarcoidosis andthat> makes> > >>>>>>me think either they're going to their own forum and/or its> being> > >>>>>>underdiagnose d by many doctors. Also note that of thepatients> sent to> > >>>>>>the ILD center approximately 10% were determined not to havean> ILD and> > >>>>>>another 10% haven't been determined yet.> > >>>>>>> > >>>>>>> > >>>>>> > >>>> > >> >>

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bruce

just curious

is Pirfenidone good for any other diseases

it's interesting that we talk about imuran here for pf

but it is also used for Crohn's

when i had the allergic reaction to imuran, i gave the left over pills to Jerry, so they didn't go to waste

then there is an RA med, maybe remicaid, that they have started using for Crohn's also

wonder if remicaid would help with PF?

interesting to see if anything else will be discovered by accident to help with pf

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: Lumping of the diseasesTo: Breathe-Support Date: Tuesday, January 5, 2010, 11:53 PM

Dr. Raghu has been involved with trials of Pirfenidone and published onit starting in 1999. The University of Washington published results of atrial of 54 patients in 1999 and he was one who signed that study. Heactually was involved earlier as I've found articles published as earlyas March, 1997. There were three patients involved in testing here atUTSW in the 90's. I think we sometimes lose sight of how long some ofthese drugs have been around and how many clinical trials for how manydifferent conditions they have been through.> > >

>>>>>> > > >>>>>> > > >>>>>>From: Bruce <brucemoreland@ gmail.com>> > > >>>>>>Subject: Lumping of the diseases> > > >>>>>>To: Breathe-Support@ yahoogroups. com> > > >>>>>>Date: Saturday, January 2, 2010, 10:29 AM> > > >>>>>>> > > >>>>>>> > > >>>>>>Â> > > >>>>>>I found it interesting to read some more date published bythe> > > >>>>>>University of Pittsburgh ILD center. Here are the patientswho> > went to> > > >>>>>>their center from January 1-October 14, 2009.> > > >>>>>>> > > >>>>>>Now, tossing out

some more interesting information (at least> to> > me) and> > > >>>>>>that is a breakdown of the patients who went to theUniversity> > of> > > >>>>>>Pittsburgh ILD center from January 1-October 14 of lastyear.> > > >>>>>>> > > >>>>>>IPF UIP 574> > > >>>>>>Sarcoidosis 502> > > >>>>>>PF Rheumatoid Condition 277> > > >>>>>>ILD Ruled Out 179> > > >>>>>>Under Evaluation 179> > > >>>>>>Hypersensitiv ity Pneumonitis 51> > > >>>>>>PF of other Causes 49> > > >>>>>>Other IIP's 44> > > >>>>>>Pulmonary Hypertension 33> > >

>>>>>>Occupational Diseases 26> > > >>>>>>> > > >>>>>>So, only 30% of the patients had IPF UIP.> > > >>>>>>> > > >>>>>>I'm surprised we don't talk more here about Sarcoidosis and> that> > makes> > > >>>>>>me think either they're going to their own forum and/or its> > being> > > >>>>>>underdiagnose d by many doctors. Also note that of the> patients> > sent to> > > >>>>>>the ILD center approximately 10% were determined not to have> an> > ILD and> > > >>>>>>another 10% haven't been determined yet.> > > >>>>>>> > > >>>>>>> > > >>>>>> >

> >>>> > > >> > >> >>

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Joyce,For about 6 months I was on Thalidomide, which is in no way prescribed for ILD, but showed great promise in Great Britain in a study. My MD at UCLA put me on, and then after he left, another MD there took me off saying it had no benefits, showed no promise. For me, I think it (along with the Cellcept) calmed the inflammation. Just my 2 cents worth.Kathy ILD/Hypersensitivity pneumonitis 3/08 Type 2 diabetes forever ago

From: Bruce <brucemoreland@ gmail.com>Subject: Re: Lumping of the diseasesTo: Breathe-Support@ yahoogroups. comDate: Tuesday, January 5, 2010, 11:53 PM

Dr. Raghu has been involved with trials of Pirfenidone and published onit starting in 1999. The University of Washington published results of atrial of 54 patients in 1999 and he was one who signed that study. Heactually was involved earlier as I've found articles published as earlyas March, 1997. There were three patients involved in testing here atUTSW in the 90's. I think we sometimes lose sight of how long some ofthese drugs have been around and how many clinical trials for how manydifferent conditions they have been through.> > >

>>>>>> > > >>>>>> > > >>>>>>From: Bruce <brucemoreland@ gmail.com>> > > >>>>>>Subject: Lumping of the diseases> > > >>>>>>To: Breathe-Support@ yahoogroups. com> > > >>>>>>Date: Saturday, January 2, 2010, 10:29 AM> > > >>>>>>> > > >>>>>>> > > >>>>>>Â> > > >>>>>>I found it interesting to read some more date published bythe> > > >>>>>>University of Pittsburgh ILD center. Here are the patientswho> > went to> > > >>>>>>their center from January 1-October 14, 2009.> > > >>>>>>> > > >>>>>>Now, tossing out

some more interesting information (at least> to> > me) and> > > >>>>>>that is a breakdown of the patients who went to theUniversity> > of> > > >>>>>>Pittsburgh ILD center from January 1-October 14 of lastyear.> > > >>>>>>> > > >>>>>>IPF UIP 574> > > >>>>>>Sarcoidosis 502> > > >>>>>>PF Rheumatoid Condition 277> > > >>>>>>ILD Ruled Out 179> > > >>>>>>Under Evaluation 179> > > >>>>>>Hypersensitiv ity Pneumonitis 51> > > >>>>>>PF of other Causes 49> > > >>>>>>Other IIP's 44> > > >>>>>>Pulmonary Hypertension 33> > >

>>>>>>Occupational Diseases 26> > > >>>>>>> > > >>>>>>So, only 30% of the patients had IPF UIP.> > > >>>>>>> > > >>>>>>I'm surprised we don't talk more here about Sarcoidosis and> that> > makes> > > >>>>>>me think either they're going to their own forum and/or its> > being> > > >>>>>>underdiagnose d by many doctors. Also note that of the> patients> > sent to> > > >>>>>>the ILD center approximately 10% were determined not to have> an> > ILD and> > > >>>>>>another 10% haven't been determined yet.> > > >>>>>>> > > >>>>>>> > > >>>>>> >

> >>>> > > >> > >> >>

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Hi Joyce,I should have asked for something but am so new to all of this. It is still very frightening for me. My pulmo is on vacation and I have been trying to get into seeing one of the other dr. and it seems like a hassle. I haven't seen a specialist yet but am schedule to go to NY Columbia Presp Hospital in Feb for transplant eval. I did call Strong Memorial Hosp. in Rochester. NY but can't get in an appt' until Feb and the app't to NYCPH is in Feb. also. I just want someone else to look at the biopsy and suggest something.To: Breathe-Support Sent: Wed, January 6, 2010 9:08:43 AMSubject: Re: Re: Lumping of the diseases

i agree with in that people should try something to see if it will work

i do believe there is no cure, but there is treatment to help keep you more comfortable and if the issue is inflammation, you need to decrease the inflamation

i was told by my pulmonary that I am one of the rare people for whom increased doses of prednisone worked and am responding to Cellcept

the longer it works, the longer i can put off a transplant with all of the rejection and infection issues that scare me

call your doc and tell him how you feel and that you want to try something

by the way, are you seeing a specialist in ILD's

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www..transplantfund. org

From: worth <hope2thend (AT) yahoo (DOT) com>Subject: Re: Re: Lumping of the diseasesTo: Breathe-Support@ yahoogroups. comDate: Tuesday, January 5, 2010, 11:03 PM

,

When facing a terminal illness I believe any type of treatment is worth a try, but then that's just me, and for your docs to say "nothing" will help you is just wrong. You should definitely speak up and ask to try a medication if that's what you want and its an available treatment for your disease.

I just don't think these drugs are created to be totally fruitless, they must work on someone! I know its probably a small percentage or dependent on other factors, but the bottom line is we just don't know how our bodies will respond unless we take that risk!

I plan to talk to Dr. Raghu about Pirfendone when I see him in February. If he thinks its worth a try then I want to try it. But then, that's just me.

C_53_Familial IPF_5/09, Washington

HOPE doesn't disappoint!

From: Terry Oettinger <iltopaint (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Tue, January 5, 2010 6:19:22 AMSubject: Re: Re: Lumping of the diseases

Bruce,When I read things about this drug it becomes so frustrating because it all comes down to is that nothing works. Yes, many have shown improvement on some drugs but others have no option but hope. Seems almost sad. I was told that the UIP that I have that nothing can help so I won't be given anything. I should of said how do you know that.it won't do some good for me but I didn't. After reading all of the posts every day I wonder even more.

From: Bruce <brucemoreland@ gmail.com>To: Breathe-Support@ yahoogroups. comSent: Tue, January 5, 2010 12:32:35 AMSubject: Re: Lumping of the diseases

ErnaI have no idea what you're trying to imply but a couple of facts. First,Pirfenidone was orphaned long ago and always scheduled for a fast track,typically six months or so. The longest delay was their delay in thesubmission, probably impacted some point by the less than stellarresults of the clinical trials.Second, as to Wall Street playing with Pirfenidone and lives, I thinkthe truth is that Wall Street has been more supportive of Intermune thanmost companies ever expect. They supported them through criminal chargesresulting in conviction of the previous CEO based on actions of hiswhile heading Intermune and through law suits. They have supported acompany that has only one product available for sale and very few salesof it. They have poured millions into a company with virtually norevenues and provided more each time Intermune solicited funds.Third, as to Pirfenidone saving

lives, there is really no evidencewhatsoever as to that. The most upbeat evidence is that is slows theprogression of IPF for some period of time. At 36 weeks there was someadvantage of the Pirfenidone group versus placebo of patients in thetrial, who were those with very mild IPF. At somewhere between 72 and 96weeks, that no longer appeared the case and the death rates werevirtually identical.Many millions of dollars have been invested in Intermune by Wall Streetand other investors and they've received no return at all on theinvestment nor been shown any real prospects of return in the nearfuture. The trials were disappointing although I do still expectapproval simply because they can lobby that there is nothing elseavailable.So, maybe I'm missing something as to what you're trying to say aboutWall Street playing with lives. Intermune may be a different story.Certainly many of those who

were given Actimmune off label to treattheir PF and suffered the consequences would have an opinion on that.As of September 30, 2009, Investors (Wall Street and others) hadcontributed more than $928,000,000 (yes $928 Million) to Intermune (thedevelopers of Pirfenidone) and Intermune had losses at that point of$887 Million to date. I'm amazed anyone would pay $13 per share based onthose numbers.> >>>>>> >>>>>> >>>>>>From: Bruce

<brucemoreland@ gmail.com>> >>>>>>Subject: Lumping of the diseases> >>>>>>To: Breathe-Support@ yahoogroups. com> >>>>>>Date: Saturday, January 2, 2010, 10:29 AM> >>>>>>> >>>>>>> >>>>>>Â> >>>>>>I found it interesting to read some more date published by the> >>>>>>University of Pittsburgh ILD center. Here are the patients whowent to> >>>>>>their center from January 1-October 14, 2009.> >>>>>>> >>>>>>Now, tossing out some more interesting information (at least tome) and> >>>>>>that is a breakdown of the patients who went to the Universityof>

>>>>>>Pittsburgh ILD center from January 1-October 14 of last year.> >>>>>>> >>>>>>IPF UIP 574> >>>>>>Sarcoidosis 502> >>>>>>PF Rheumatoid Condition 277> >>>>>>ILD Ruled Out 179> >>>>>>Under Evaluation 179> >>>>>>Hypersensitiv ity Pneumonitis 51> >>>>>>PF of other Causes 49> >>>>>>Other IIP's 44> >>>>>>Pulmonary Hypertension 33> >>>>>>Occupational Diseases 26> >>>>>>> >>>>>>So, only 30% of the patients had IPF UIP.> >>>>>>> >>>>>>I'm surprised we don't talk more here about Sarcoidosis and thatmakes> >>>>>>me think either they're going to

their own forum and/or itsbeing> >>>>>>underdiagnose d by many doctors. Also note that of the patientssent to> >>>>>>the ILD center approximately 10% were determined not to have anILD and> >>>>>>another 10% haven't been determined yet.> >>>>>>> >>>>>>> >>>>>> >>>> >>

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Joyce, I take Diovan too. Works wonders.To: Breathe-Support Sent: Wed, January 6, 2010 9:19:24 AMSubject: Re: Re: Lumping of the diseases

Bruce

i have heard people talk about Nexium vs the other PPI's

some people say one brand works better for them than another brand

insurance stopped paying for Nexium, prilosec works, so i am on the generic -- omerprazole

on the other hand

i was on Diovan for blood pressure, insurance stopped paying for that

family doc put me on Altace -- gave me a sample to start with

noticed an increase in cough

called pulmonary

they asked what else was going on, any changes?

told them about Altace

they told me that Altace can cause increase in cough

informed family doc

docs did the required paperwork to get me back on Diovan

insurance approved Diovan

added Altace to list of allergies

wish there were a substitute for prednisone, but since it helps, i deal with the side effects,

besides, after transplant, i would be on prednisone anyway

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund. org

From: Bruce <brucemoreland@ gmail.com>Subject: Re: Lumping of the diseasesTo: Breathe-Support@ yahoogroups. comDate: Tuesday, January 5, 2010, 11:32 PM

Dr. Raghu has long been a proponent of Pirfenidone as he has been aconsultant and speaker for Intermune in addition to his involvement inthe trials. He was also a strong proponent of Actimmune as well. Now, hewas able to prescribe Actimmune off-label as did others, but thats notpossible for Pirfenidone since it isn't yet approved for any condition.When trying meds don't forget the side effects in the decision equationis all I would say. Most importantly, don't try an unproven med for acondition for which a proven one exists. Fully informed as to the facts,then any choice an individual makes is fine. The influences on doctorsis a part of that as well too. For instance, on Actimmune, Intermune hada sales force encouraging its use widely for PF even though it wasn'tapproved for such. Now, thats a common practice.A simple example of how complex it can become. Is Nexium really

betterthan the other PPI's enough to justify my doctors insisting I use it andnot consider Prilosec? One side would say absolutely. The other sidewould say its all Astra Zeneca's manipulation and influence. Either waythe only test showing such is one run by Astra Zeneca and comparing nonequal dosages. One doctor believes one way and another the opposite. So,as a patient, we have to make a choice sometimes.I expect Pirfenidone to be widely prescribed by some doctors for IPF. Ijust hope its not prescribed carelessly for other forms or possibleother forms of PF where proven treatments do exist and where it hasn'teven been tested. I don't think those expert in ILD's are likely to dothat but I do fear the less expert doctors throughout the country mayvery well, when prednisone or imuran or cellcept or other meds are knownto help certain ILD's.> > >>>>>> > >>>>>> > >>>>>>From: Bruce

<brucemoreland@ gmail.com>> > >>>>>>Subject: Lumping of the diseases> > >>>>>>To: Breathe-Support@ yahoogroups. com> > >>>>>>Date: Saturday, January 2, 2010, 10:29 AM> > >>>>>>> > >>>>>>> > >>>>>>Â> > >>>>>>I found it interesting to read some more date published by the> > >>>>>>University of Pittsburgh ILD center. Here are the patients who> went to> > >>>>>>their center from January 1-October 14, 2009.> > >>>>>>> > >>>>>>Now, tossing out some more interesting information (at leastto> me) and> > >>>>>>that is a breakdown of the

patients who went to the University>

of> > >>>>>>Pittsburgh ILD center from January 1-October 14 of last year.> > >>>>>>> > >>>>>>IPF UIP 574> > >>>>>>Sarcoidosis 502> > >>>>>>PF Rheumatoid Condition 277> > >>>>>>ILD Ruled Out 179> > >>>>>>Under Evaluation 179> > >>>>>>Hypersensitiv ity Pneumonitis 51> > >>>>>>PF of other Causes 49> > >>>>>>Other IIP's 44> > >>>>>>Pulmonary Hypertension 33> > >>>>>>Occupational Diseases 26> > >>>>>>> > >>>>>>So, only 30% of the patients had IPF UIP.> > >>>>>>> > >>>>>>I'm surprised we don't talk more here about

Sarcoidosis andthat> makes> > >>>>>>me think either they're going to their own forum and/or its> being> > >>>>>>underdiagnose d by many doctors. Also note that of thepatients> sent to> > >>>>>>the ILD center approximately 10% were determined not to havean> ILD and> > >>>>>>another 10% haven't been determined yet.> > >>>>>>> > >>>>>>> > >>>>>> > >>>> > >> >>

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Pink

So far Pirfenidone has not been approved for any disease or condition.

Most meds used for connective tissue diseases are used at least

indirectly for forms of PF in treating PF caused by the connective

tissue disease. Many of them now are being tested for IPF in one form or

another. I don't presently see remicade being evaluated for PF but who

knows if it will be. It's sure being tried for many things. I just saw

it was being evaluated for treatment resistant major depression. The

pharmaceuticals find something it seems and then just want to see how

many things it might work for. But sometimes the greatest successes come

by accident and have nothing to do with the original purpose of the

drug.

> > > > >>>>>

> > > > >>>>>

> > > > >>>>>>From: Bruce <brucemoreland@ gmail.com>

> > > > >>>>>>Subject: Lumping of the diseases

> > > > >>>>>>To: Breathe-Support@ yahoogroups. com

> > > > >>>>>>Date: Saturday, January 2, 2010, 10:29 AM

> > > > >>>>>>

> > > > >>>>>>

> > > > >>>>>>Â

> > > > >>>>>>I found it interesting to read some more date published by

> the

> > > > >>>>>>University of Pittsburgh ILD center. Here are the patients

> who

> > > went to

> > > > >>>>>>their center from January 1-October 14, 2009.

> > > > >>>>>>

> > > > >>>>>>Now, tossing out some more interesting information (at

least

> > to

> > > me) and

> > > > >>>>>>that is a breakdown of the patients who went to the

> University

> > > of

> > > > >>>>>>Pittsburgh ILD center from January 1-October 14 of last

> year.

> > > > >>>>>>

> > > > >>>>>>IPF UIP 574

> > > > >>>>>>Sarcoidosis 502

> > > > >>>>>>PF Rheumatoid Condition 277

> > > > >>>>>>ILD Ruled Out 179

> > > > >>>>>>Under Evaluation 179

> > > > >>>>>>Hypersensitiv ity Pneumonitis 51

> > > > >>>>>>PF of other Causes 49

> > > > >>>>>>Other IIP's 44

> > > > >>>>>>Pulmonary Hypertension 33

> > > > >>>>>>Occupational Diseases 26

> > > > >>>>>>

> > > > >>>>>>So, only 30% of the patients had IPF UIP.

> > > > >>>>>>

> > > > >>>>>>I'm surprised we don't talk more here about Sarcoidosis

and

> > that

> > > makes

> > > > >>>>>>me think either they're going to their own forum and/or

its

> > > being

> > > > >>>>>>underdiagnose d by many doctors. Also note that of the

> > patients

> > > sent to

> > > > >>>>>>the ILD center approximately 10% were determined not to

have

> > an

> > > ILD and

> > > > >>>>>>another 10% haven't been determined yet.

> > > > >>>>>>

> > > > >>>>>>

> > > > >>>>>

> > > > >>>

> > > > >

> > > >

> > >

> >

>

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