Guest guest Posted January 2, 2010 Report Share Posted January 2, 2010 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. > > > > > > > > > > > > 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. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2010 Report Share Posted January 2, 2010 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. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2010 Report Share Posted January 2, 2010 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. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2010 Report Share Posted January 2, 2010 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. > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2010 Report Share Posted January 2, 2010 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. > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2010 Report Share Posted January 3, 2010 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. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2010 Report Share Posted January 3, 2010 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. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2010 Report Share Posted January 4, 2010 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. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2010 Report Share Posted January 4, 2010 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. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2010 Report Share Posted January 4, 2010 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.> >>>>>>> >>>>>> > >>>>> > >>> > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2010 Report Share Posted January 4, 2010 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.> >>>>>>> >>>>>> > >>>>> > >>> > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2010 Report Share Posted January 4, 2010 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. > >>>>>> > >>>>>> > >>>>> > >>> > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2010 Report Share Posted January 5, 2010 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. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2010 Report Share Posted January 5, 2010 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.> >>>>>>> >>>>>>> >>>>>> >>>> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2010 Report Share Posted January 5, 2010 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. > >>>>>> > >>>>>> > >>>>> > >>> > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2010 Report Share Posted January 5, 2010 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. > > >>>>>> > > >>>>>> > > >>>>> > > >>> > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2010 Report Share Posted January 5, 2010 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. > > >>>>>> > > >>>>>> > > >>>>> > > >>> > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2010 Report Share Posted January 5, 2010 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. > > > >>>>>> > > > >>>>>> > > > >>>>> > > > >>> > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2010 Report Share Posted January 6, 2010 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.> >>>>>>> >>>>>>> >>>>>> >>>> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2010 Report Share Posted January 6, 2010 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.> > >>>>>>> > >>>>>>> > >>>>>> > >>>> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2010 Report Share Posted January 6, 2010 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.> > > >>>>>>> > > >>>>>>> > > >>>>>> > > >>>> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2010 Report Share Posted January 6, 2010 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.> > > >>>>>>> > > >>>>>>> > > >>>>>> > > >>>> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2010 Report Share Posted January 6, 2010 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.> >>>>>>> >>>>>>> >>>>>> >>>> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2010 Report Share Posted January 6, 2010 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.> > >>>>>>> > >>>>>>> > >>>>>> > >>>> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2010 Report Share Posted January 6, 2010 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. > > > > >>>>>> > > > > >>>>>> > > > > >>>>> > > > > >>> > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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