Re: Lumping of the diseases

[Guest guest]

kathy

i vaguely remember reading about someone on Thalidomide and was surprised that it still exists

the --itis is indicative of an inflammation, so it makes sense that something anti inflammatory would help

is the inflammation still calm with just the cellcept

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: Wednesday, January 6, 2010, 9:38 AM

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/Hypersensitivit y 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.> > > >>>>>>> > > >>>>>>> > > >>>>>> > > >>>> > > >> > >>

>>

[Guest guest]

glad you have plans for further evaluation

bring your list of questions with you

take notes, there will be a lot of new info for you to learn -- overwhelming in the beginning

i went to the transplant eval by myself

however, i do wish Jerry would have been there on the second afternoon when all of the meetings/education classes took place-- i think there were 4 sessions at Penn -- financial, social work, transplant ed and something else, off hand i don't remember what it was

i did take lots of notes, but i'm sure i missed stuff

at this point it doesn't matter, because a lot of the stuff has been gone over with me multiple times at various transplant team appts

some people bring tape recorders with them, so they can review everything when they are more relaxed and able to absorb everything

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: Wednesday, January 6, 2010, 9:48 AM

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.

From: Joyce T Rosenberg <pinkrockybeach@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: 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.> >>>>>>> >>>>>>> >>>>>> >>>> >>

[Guest guest]

Pink,ep. The last CT scan done in August, showed no inflammation. But if I go down to 1000mg of the Cellcept daily, the cough gets much worse. Go figure.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.> > > >>>>>>> > > >>>>>>> > > >>>>>> > > >>>> > > >> > >>

>>

[Guest guest]

that is true about the successes come by accident

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: Wednesday, January 6, 2010, 10:34 AM

PinkSo far Pirfenidone has not been approved for any disease or condition.Most meds used for connective tissue diseases are used at leastindirectly for forms of PF in treating PF caused by the connectivetissue disease. Many of them now are being tested for IPF in one form oranother. I don't presently see remicade being evaluated for PF but whoknows if it will be. It's sure being tried for many things. I just sawit was being evaluated for treatment resistant major depression. Thepharmaceuticals find something it seems and then just want to see howmany things it might work for. But sometimes the greatest successes comeby accident and have nothing to do with the original purpose of thedrug.> > > > >>>>>> > > > >>>>>> > > > >>>>>>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 (atleast> > 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 Sarcoidosisand> > that> > > makes> > > > >>>>>>me think either they're going to their own forum and/orits> > > being> > > > >>>>>>underdiagnose d by many doctors. Also note that of the> > patients> > > sent to> > > > >>>>>>the

ILD center approximately 10% were determined not tohave> > an> > > ILD and> > > > >>>>>>another 10% haven't been determined yet.> > > > >>>>>>> > > > >>>>>>> > > > >>>>>> > > > >>>> > > > >> > > >> > >> >>

[Guest guest]

then obviously the higher dose of cellcept controls the inflammation

i am on cellcept 2000 mgs daily

they were able to get the prednisone down to 10 mgs

because of the bronchitis, the prednisone is up again

i've got it down to 15mgs, will decrease it down to 10 mgs in a couple of days

according to doc i should have been down to 10 mgs by now, but went to a hibachi grill that seemed to irritate the bronchitis, so i am keeping it a little higher until this bronchitis is gone

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: Wednesday, January 6, 2010, 11:33 AM

Pink,ep. The last CT scan done in August, showed no inflammation. But if I go down to 1000mg of the Cellcept daily, the cough gets much worse. Go figure.Kathy ILD/Hypersensitivit y 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.> > > >>>>>>> > > >>>>>>> > > >>>>>> > > >>>> > > >> > >>

>>

[Guest guest]

I know....

C_53_Familial IPF_5/09, Washington

HOPE doesn't disappoint!

To: Breathe-Support Sent: Wed, January 6, 2010 4:34:26 AMSubject: Re: Re: Lumping of the diseases

thanks .It is all so frustrating.

From: worth <hope2thend (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Tue, January 5, 2010 11:03:16 PMSubject: Re: Re: Lumping of the diseases

,

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.> >>>>>>> >>>>>>> >>>>>> >>>> >>

[Guest guest]

I took OTC Prilosec for years, and it caused scaring in my esophagus. My Dr. prescribed nexium, and my insurance didn't want to pay for it until the Dr. told them I have Barrett's Esophagus. Now they have agreed to pay. I guess with some meds it depends on the diagnosis whether or not insurance pays. I know your Dr. can fight for you if he will.PatTo: Breathe-Support Sent: Wed, January 6, 2010 8:19:24 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.> > >>>>>>> > >>>>>>> > >>>>>> > >>>> > >> >>

[Guest guest]

Ok I've just recently started taking Prilosec, take it for about 4 days then go off of it for maybe 4-5 days anyone else out there had problems with this Gascoigne SD, 50 yrs old, Renaud's 2008, IPF 7/2009To:

Breathe-Support Sent: Thu, January 7, 2010 8:22:07 AMSubject: Re: Re: Lumping of the diseases

I took OTC Prilosec for years, and it caused scaring in my esophagus. My Dr. prescribed nexium, and my insurance didn't want to pay for it until the Dr. told them I have Barrett's Esophagus. Now they have agreed to pay. I guess with some meds it depends on the diagnosis whether or not insurance pays. I know your Dr. can fight for you if he will.PatFrom: Joyce T Rosenberg <pinkrockybeach@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Wed, January 6, 2010 8:19:24 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.> > >>>>>>> > >>>>>>> > >>>>>> > >>>> > >> >>