UIP/IPF

[Guest guest]

Hi Everyone, My name is Godfrey and am new to this site. I've been diagnosed with UIP/IPF. Onset of symptoms was Dec. '05 after a flu-like illness in which "The Cough" would not go away. After seeing a myriad of doctors, and being treated for a sinus infection, it was confirmed by CT scan that I had "fibrotic changes" at the bases of my lungs. I've had approx. 17 x-rays over 2 years trying to figure out exactly what I have. I've been seen at the sdale Mayo Clinic in AZ (where I live) for the past year. I did not get any information about this disease from them either. I would not recommend them to anyone. All they want is money and a lot of it. I found a REALLY GOOD pulmonalogist in Phoenix, who is very knowlegable of this disease. I had the VATS surgery on April 30, '08. Hospital stay was

4 days. I am doing great, no pain at all. I still have that cough, but it has lessened since I got prescribed Benzonatate (Tessalon Pearls). The VATS surgery confirmed the diagnosis, which I had to have in order to go into a research study. I am waiting my call any day now to start the study. I will be going on Bosentan (Tracleer). This drug has already been FDA approved for pulmonary arterial hypertension (which I do not have). They have opened up the study for 100 more people who have IPF without pulmonary hypertension, to see if it slows down or stops the fibrosing in the lung, as it has antifibrotic properties in this drug. It was either going into the study or starting the course of Imuran and Predisone. It was a "no brainer" for me, as I don't have any other underlying condition. Oh, I forgot, at the same time of the flu-like illness back in Dec. '05, after going to the doctor and having

the tests run, I did have a slightly elevated TSH, so I have been taking a low dose of Thyroid med. for hypothroidism. Other then that, I feel good, not on Oxygen yet; I have a finger oximerter that I use and levels tend to be in the 90's. Does anyone know about Bosentan or have been on it? There is also a new research study starting in July that I could go into. (Can't do both) It is a and drug for IPF, but will have to be closely monitered as it is a weekly IV drug. I don't know the name. Has anyone heard about this study? I'm originally from Seattle, WA and moved to AZ permanently after retiring from my job Nov. 2006. I just turned 62 on May 8th, so went and applied for SS. Hurrah!

G IPF/UIP 5/07 AZ

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[Guest guest]

Hi

I am so sorry that you have to join us, but you will find a lot of

information here. I was diagnosed in Dec. 1998. I just started my

study drug this past Friday. I am in the STEP Trial which stands for

Sidenafil Trial of Exercise Progression. I go to Emory in Atlanta.

Yes, the nurse told me about the IV study drug. That trial only lasts

for one month. Very easy, only an IV once or twice I think. I saw one

of my acquaintances at Emory this past Friday that is in the Support

Group at Emory. He is in the Bosentin Trial. As he was doing breathing

tests, I spoke to his wife out in the hall. She doesn't think he is

doing well. He won't wear his oxygen as he should. There is a link on

our site here that describes all the trials. You will find it very

interesting. Good luck to you!

Toodles!

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

[Guest guest]

Bosentan, much like Sildenafil which Jane is trying, is used to treat

Pulmonary Hypertension which many Pulmonary Fibrosis patients have. Now

doctors have observed over time both improving the ability to exercise

for PF patients, but these were patients with PH as well. So, now both

are being tested to see if they will help patients with PF only. A good

thing about both and about those trials, is that the drugs are approved

for other uses and any side effects well known. So they know what side

effects to look for and the medication normally doesn't have serious

ones.

Now the injection i think you're referring to is specifically designed

to see the effect of a single injection (or a couple) might have. It is

designed for early stage persons like you.

Good luck in getting into the trial of your choice. Welcome here.

[Guest guest]

....welcome to our family. It won't take long until you know most of us.

One thing about filing for SS........Consider filing for Disability first. Once you are on SS you cannot change over to Disability after 65. I've been around and around with this. I turn 70 this year, was already on SS when diagnosed 3-06 with IPF....recently changed to NSIP. Anyway, check this out. You many need/receive more disability and especially down the road.........

Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there!

UIP/IPF

Hi Everyone, My name is Godfrey and am new to this site. I've been diagnosed with UIP/IPF. Onset of symptoms was Dec. '05 after a flu-like illness in which "The Cough" would not go away. After seeing a myriad of doctors, and being treated for a sinus infection, it was confirmed by CT scan that I had "fibrotic changes" at the bases of my lungs. I've had approx. 17 x-rays over 2 years trying to figure out exactly what I have. I've been seen at the sdale Mayo Clinic in AZ (where I live) for the past year. I did not get any information about this disease from them either. I would not recommend them to anyone. All they want is money and a lot of it. I found a REALLY GOOD pulmonalogist in Phoenix, who is very knowlegable of this disease. I had the VATS surgery on April 30, '08. Hospital stay was 4 days. I am doing great, no pain at all. I still have that cough, but it has lessened since I got prescribed Benzonatate (Tessalon Pearls). The VATS surgery confirmed the diagnosis, which I had to have in order to go into a research study. I am waiting my call any day now to start the study. I will be going on Bosentan (Tracleer). This drug has already been FDA approved for pulmonary arterial hypertension (which I do not have). They have opened up the study for 100 more people who have IPF without pulmonary hypertension, to see if it slows down or stops the fibrosing in the lung, as it has antifibrotic properties in this drug. It was either going into the study or starting the course of Imuran and Predisone. It was a "no brainer" for me, as I don't have any other underlying condition. Oh, I forgot, at the same time of the flu-like illness back in Dec. '05, after going to the doctor and having the tests run, I did have a slightly elevated TSH, so I have been taking a low dose of Thyroid med. for hypothroidism. Other then that, I feel good, not on Oxygen yet; I have a finger oximerter that I use and levels tend to be in the 90's. Does anyone know about Bosentan or have been on it? There is also a new research study starting in July that I could go into. (Can't do both) It is a and drug for IPF, but will have to be closely monitered as it is a weekly IV drug. I don't know the name. Has anyone heard about this study? I'm originally from Seattle, WA and moved to AZ permanently after retiring from my job Nov. 2006. I just turned 62 on May 8th, so went and applied for SS. Hurrah!

G IPF/UIP 5/07 AZ

Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.

[Guest guest]

,

Welcome to our group. This is a horrid disease and there is so much confusion in the treatment of it. Doctors don't agree. Many don't even know what it is. I am glad that you are getting better medical care.

I am aware of the Bosentan studies. It has been approved now for PAH. I have severe PAH, but am on a drug called Flolan. I wish I could have been put on Tracleer because of the great promise of stabilizing the fibrosis. That study in particular shows a lot of promise. Just being stable is a victory.

I'm glad your biopsy went well. Hope the drug does wonders for you!

Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16

[Guest guest]

Hi , Welcome aboard! Your case history sounds very similar to mine. My first hint of IPF came in the summer of 2005 as I had a car accident in which I was struck from the side. Due to chest pains, a CAT scan was performed which revealed scarring suggesting a precondition which could lead to IPF. I retired about 4 months later (age 58) and have been living in Mexico but for summer trips to the states for diagnostic followups on a persistent cough I can't seem to shake. During the summer of 2006, I spent time with a pulmonologist in Northern California who thru a variety of testing concluded I had IPF. Of course, I learned then, as everyone on this forum has at one time or another, that there is no cure, no treatment. As a result, I returned to Mexico for another 8 months. During that time I spent a lot of time web browsing. I learned the only

way to actually confirm I had IPF was through a VATS procedure. To finally put any doubts to rest, I returned to the states (Seattle) to have this performed in May of 2007. It was there my preliminary diagnosis of IPF was confirmed by lung biopsy. But there was an upside for I was told my particular form of IPF was of a slowly progressing type. Two months later, while visiting Wisconsin, I learned about the Tracleer (Bosenthan) study to which I applied. Unfortunately, I was turned down for the degree of fibrosis in my lungs was greater than the maximum allowed to be part of the study. Later that same year while back in Mexico, I learned of a Sildenafil study in Florida to which I applied. One of the test they required in advance was a test for Pulmonary Hypertension. Not ever having had that tested, I had both an echocardiogram and an

esophageal echocardiogram performed here in Mexico. My PAH turned out to be 65 mm - which exceeded the 50 mm maximum for the study. I bring this to your attention for the simple reason that according to my symptoms my disease was in the very early onset, yet in reality it had progressed much farther than the noted pulmonologists providing my care thought possible. By the way, I turn 61 on May 13th and my finger oximeter (but for flying) remains in the 90's as well. I hope you are able to get in on the Tracleer study but if not you may want to look at a NAC (N-acetylcysetine) study that is coming up nationwide in the fall. I have been on NAC since the summer of 2008. It is the only treatment I am taking for IPF and it seems to have reduced my coughing and phlegm production substantially. Saludos, Mike

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[Guest guest]

Joyce,

Thank you--I have always been a up-beat type person with a positive attitude and love a good joke and I know that this is a up hill battle----but we all made a deal with God when we were born and it includes dying--so far he dealt a hand I don't like. I think he dropped a card on the floor when he was dealing---soooo I have to talk him into re-shuffling the cards and until he comes around I'm staying pat!!!

G. UIP/IPF 5/07 Az

Subject: Re: UIP/IPFTo: Breathe-Support Date: Tuesday, May 13, 2008, 12:47 AM

,

Welcome to our group. This is a horrid disease and there is so much confusion in the treatment of it. Doctors don't agree. Many don't even know what it is. I am glad that you are getting better medical care.

I am aware of the Bosentan studies. It has been approved now for PAH. I have severe PAH, but am on a drug called Flolan. I wish I could have been put on Tracleer because of the great promise of stabilizing the fibrosis. That study in particular shows a lot of promise. Just being stable is a victory.

I'm glad your biopsy went well. Hope the drug does wonders for you!

Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16

Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.

[Guest guest]

Welcome , Happy Birthday. I also celebrated my 60th birthday on May 4th. I could no longer work as of last march. I was able to get on SSDI within 90 days of applying. My wife arranged a cruise to Alaska. For birthday and our aniversary. Very beautiful. I had lived in Anchorage for a while but the inside passage was different. My breathing, sleep sat rates were all great with the clean air. Too bad I can't afford to live on a cruise ship. Ha Ha Well anyway you will find great people and information to help with decisions here.

Steve 60 from WA IPF 2006 Parkinsons 2008

Reply-To: Breathe-Support To: Breathe-Support Subject: UIP/IPFDate: Sun, 11 May 2008 23:20:01 -0700 (PDT)

Hi Everyone, My name is Godfrey and am new to this site. I've been diagnosed with UIP/IPF. Onset of symptoms was Dec. '05 after a flu-like illness in which "The Cough" would not go away. After seeing a myriad of doctors, and being treated for a sinus infection, it was confirmed by CT scan that I had "fibrotic changes" at the bases of my lungs. I've had approx. 17 x-rays over 2 years trying to figure out exactly what I have. I've been seen at the sdale Mayo Clinic in AZ (where I live) for the past year. I did not get any information about this disease from them either. I would not recommend them to anyone. All they want is money and a lot of it. I found a REALLY GOOD pulmonalogist in Phoenix, who is very knowlegable of this disease. I had the VATS surgery on April 30, '08. Hospital stay was 4 days. I am doing great, no pain at all. I still have that cough, but it has lessened since I got prescribed Benzonatate (Tessalon Pearls). The VATS surgery confirmed the diagnosis, which I had to have in order to go into a research study. I am waiting my call any day now to start the study. I will be going on Bosentan (Tracleer). This drug has already been FDA approved for pulmonary arterial hypertension (which I do not have). They have opened up the study for 100 more people who have IPF without pulmonary hypertension, to see if it slows down or stops the fibrosing in the lung, as it has antifibrotic properties in this drug. It was either going into the study or starting the course of Imuran and Predisone. It was a "no brainer" for me, as I don't have any other underlying condition. Oh, I forgot, at the same time of the flu-like illness back in Dec. '05, after going to the doctor and having the tests run, I did have a slightly elevated TSH, so I have been taking a low dose of Thyroid med. for hypothroidism. Other then that, I feel good, not on Oxygen yet; I have a finger oximerter that I use and levels tend to be in the 90's. Does anyone know about Bosentan or have been on it? There is also a new research study starting in July that I could go into. (Can't do both) It is a and drug for IPF, but will have to be closely monitered as it is a weekly IV drug. I don't know the name. Has anyone heard about this study? I'm originally from Seattle, WA and moved to AZ permanently after retiring from my job Nov. 2006. I just turned 62 on May 8th, so went and applied for SS. Hurrah!

G IPF/UIP 5/07 AZ

Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.

[Guest guest]

Hi Steve,

Which cruise ship did you take to Alaska? When I was working, I was the Supercargo that orchestrated the discharge and loading of all the cargo (food, luggage, etc.) for all

the Amsterdam Ships that operated out of Seattle. All the passengers raved about the trip and of course the food.

Yea this site is great, I read every post and try to obsorb all the info I can as this medical stuff is very foreign to me. I am lucky to have such a great wife that is a RN and has been so supportive of my condition and explains over and over to me what is what---and of course I can't remember 10% of the stuff she is telling me. My dog (yellow lab), Dakota has been a big help to me also---he makes me get up and keep active by taking him to the park so he can play ball--- we love that dog he is irreplaceable and a God send.

G. UIP/IPF 5/07 AZ

Subject: RE: UIP/IPFTo: Breathe-Support Date: Tuesday, May 13, 2008, 5:52 PM

Welcome , Happy Birthday. I also celebrated my 60th birthday on May 4th. I could no longer work as of last march. I was able to get on SSDI within 90 days of applying. My wife arranged a cruise to Alaska. For birthday and our aniversary. Very beautiful. I had lived in Anchorage for a while but the inside passage was different. My breathing, sleep sat rates were all great with the clean air. Too bad I can't afford to live on a cruise ship. Ha Ha Well anyway you will find great people and information to help with decisions here.

Steve 60 from WA IPF 2006 Parkinsons 2008

From: Godfrey <sngodfrey46@ yahoo.com>Reply-To: Breathe-Support@ yahoogroups. comTo: Breathe-Support@ yahoogroups. comSubject: UIP/IPFDate: Sun, 11 May 2008 23:20:01 -0700 (PDT)

Hi Everyone, My name is Godfrey and am new to this site. I've been diagnosed with UIP/IPF. Onset of symptoms was Dec. '05 after a flu-like illness in which "The Cough" would not go away. After seeing a myriad of doctors, and being treated for a sinus infection, it was confirmed by CT scan that I had "fibrotic changes" at the bases of my lungs. I've had approx. 17 x-rays over 2 years trying to figure out exactly what I have. I've been seen at the sdale Mayo Clinic in AZ (where I live) for the past year. I did not get any information about this disease from them either. I would not recommend them to anyone. All they want is money and a lot of it. I found a REALLY GOOD pulmonalogist in Phoenix, who is very knowlegable of this disease. I had the VATS surgery on April 30, '08. Hospital stay was 4 days. I am doing great, no pain at all. I still have that cough,

but it has lessened since I got prescribed Benzonatate (Tessalon Pearls). The VATS surgery confirmed the diagnosis, which I had to have in order to go into a research study. I am waiting my call any day now to start the study. I will be going on Bosentan (Tracleer). This drug has already been FDA approved for pulmonary arterial hypertension (which I do not have). They have opened up the study for 100 more people who have IPF without pulmonary hypertension, to see if it slows down or stops the fibrosing in the lung, as it has antifibrotic properties in this drug. It was either going into the study or starting the course of Imuran and Predisone. It was a "no brainer" for me, as I don't have any other underlying condition. Oh, I forgot, at the same time of the flu-like illness back in Dec. '05, after going to the doctor and having the tests run, I did have a slightly elevated TSH, so I have been taking a low

dose of Thyroid med. for hypothroidism. Other then that, I feel good, not on Oxygen yet; I have a finger oximerter that I use and levels tend to be in the 90's. Does anyone know about Bosentan or have been on it? There is also a new research study starting in July that I could go into. (Can't do both) It is a and drug for IPF, but will have to be closely monitered as it is a weekly IV drug. I don't know the name. Has anyone heard about this study? I'm originally from Seattle, WA and moved to AZ permanently after retiring from my job Nov. 2006. I just turned 62 on May 8th, so went and applied for SS. Hurrah!

G IPF/UIP 5/07 AZ

Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.

[Guest guest]

, We tok the Norwegian Star from Pier 60. I moved to the Seattle area late 60's. Boeing recruited me I was going to school at Phoenix College. Of course that is when Boeing turned the lights out. Somehow mostly stuck around the NW and Alaska and ended up in Buckley WA. Foothills of Mt Rainier. I graduated High School 66 in Globe AZ and then to Tempe for College. Where do you live in Arizona.

Steve 60 from WA IPF 2006 Parkinsons 2008

Alzheimers 2008

Reply-To: Breathe-Support To: Breathe-Support Subject: RE: UIP/IPFDate: Tue, 13 May 2008 23:05:43 -0700 (PDT)

Hi Steve,

Which cruise ship did you take to Alaska? When I was working, I was the Supercargo that orchestrated the discharge and loading of all the cargo (food, luggage, etc.) for all

the Amsterdam Ships that operated out of Seattle. All the passengers raved about the trip and of course the food.

Yea this site is great, I read every post and try to obsorb all the info I can as this medical stuff is very foreign to me. I am lucky to have such a great wife that is a RN and has been so supportive of my condition and explains over and over to me what is what---and of course I can't remember 10% of the stuff she is telling me. My dog (yellow lab), Dakota has been a big help to me also---he makes me get up and keep active by taking him to the park so he can play ball--- we love that dog he is irreplaceable and a God send.

G. UIP/IPF 5/07 AZ

From: STEPHEN R WILSON <svwilsonmsn>Subject: RE: UIP/IPFTo: Breathe-Support Date: Tuesday, May 13, 2008, 5:52 PM

Welcome , Happy Birthday. I also celebrated my 60th birthday on May 4th. I could no longer work as of last march. I was able to get on SSDI within 90 days of applying. My wife arranged a cruise to Alaska. For birthday and our aniversary. Very beautiful. I had lived in Anchorage for a while but the inside passage was different. My breathing, sleep sat rates were all great with the clean air. Too bad I can't afford to live on a cruise ship. Ha Ha Well anyway you will find great people and information to help with decisions here.

Steve 60 from WA IPF 2006 Parkinsons 2008

From: Godfrey <sngodfrey46@ yahoo.com>Reply-To: Breathe-Support@ yahoogroups. comTo: Breathe-Support@ yahoogroups. comSubject: UIP/IPFDate: Sun, 11 May 2008 23:20:01 -0700 (PDT)

Hi Everyone, My name is Godfrey and am new to this site. I've been diagnosed with UIP/IPF. Onset of symptoms was Dec. '05 after a flu-like illness in which "The Cough" would not go away. After seeing a myriad of doctors, and being treated for a sinus infection, it was confirmed by CT scan that I had "fibrotic changes" at the bases of my lungs. I've had approx. 17 x-rays over 2 years trying to figure out exactly what I have. I've been seen at the sdale Mayo Clinic in AZ (where I live) for the past year. I did not get any information about this disease from them either. I would not recommend them to anyone. All they want is money and a lot of it. I found a REALLY GOOD pulmonalogist in Phoenix, who is very knowlegable of this disease. I had the VATS surgery on April 30, '08. Hospital stay was 4 days. I am doing great, no pain at all. I still have that cough, but it has lessened since I got prescribed Benzonatate (Tessalon Pearls). The VATS surgery confirmed the diagnosis, which I had to have in order to go into a research study. I am waiting my call any day now to start the study. I will be going on Bosentan (Tracleer). This drug has already been FDA approved for pulmonary arterial hypertension (which I do not have). They have opened up the study for 100 more people who have IPF without pulmonary hypertension, to see if it slows down or stops the fibrosing in the lung, as it has antifibrotic properties in this drug. It was either going into the study or starting the course of Imuran and Predisone. It was a "no brainer" for me, as I don't have any other underlying condition. Oh, I forgot, at the same time of the flu-like illness back in Dec. '05, after going to the doctor and having the tests run, I did have a slightly elevated TSH, so I have been taking a low dose of Thyroid med. for hypothroidism. Other then that, I feel good, not on Oxygen yet; I have a finger oximerter that I use and levels tend to be in the 90's. Does anyone know about Bosentan or have been on it? There is also a new research study starting in July that I could go into. (Can't do both) It is a and drug for IPF, but will have to be closely monitered as it is a weekly IV drug. I don't know the name. Has anyone heard about this study? I'm originally from Seattle, WA and moved to AZ permanently after retiring from my job Nov. 2006. I just turned 62 on May 8th, so went and applied for SS. Hurrah!

G IPF/UIP 5/07 AZ

Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.

[Guest guest]

I now live in Anthem, Az. its north of sdale about 15 miles up I-17. Its a new community (10 years old), I drive a golf cart (electric), around to everything we need to do so that has been a life saver with the gas prices going crazy. When I go to the DR. I have to drive about 40 miles round trip.

I get to see the surgeon next Friday--hope he got back the pathology report from my VATS. I have a "show & tell" item to show him---after I got home from the biopsy (4 days later), I changed the bandage where they had the drain tube and I noticed what looked like a blood spot by the incision--I picked at it and thought it was a piece of gauze, when I pulled on it ---it started coming out and it was about 6" long and was about the size of a night crawler (big worm). I have kept it in a container in the refrig. and it doesn't seem to have lost its shape. Have you heard of anyone else having this experience?

Every since the biopsy--I have been able to take deep breaths, no coughing or phlegm and my o2 level has been consistently been 92-97 with just a small hint of shortness of breath. I have been going to the gym and spend 20 minutes on the treadmill and it registers about 91-93 and all my other stuff that I do adds up to about 1 hour (nothing heavy duty just stretching the muscles), but my oxy level stays above 90 the whole time.I don't want to brag to much because I know that the biopsy didn't cure my problem, but I thought it kinda strange that thing got better for me after the biopsy---what do you think??

From: STEPHEN R WILSON <svwilsonmsn (DOT) com>Subject: RE: UIP/IPFTo: Breathe-Support@ yahoogroups. comDate: Tuesday, May 13, 2008, 5:52 PM

Welcome , Happy Birthday. I also celebrated my 60th birthday on May 4th. I could no longer work as of last march. I was able to get on SSDI within 90 days of applying. My wife arranged a cruise to Alaska. For birthday and our aniversary. Very beautiful. I had lived in Anchorage for a while but the inside passage was different. My breathing, sleep sat rates were all great with the clean air. Too bad I can't afford to live on a cruise ship. Ha Ha Well anyway you will find great people and information to help with decisions here.

Steve 60 from WA IPF 2006 Parkinsons 2008

From: Godfrey <sngodfrey46@ yahoo.com>Reply-To: Breathe-Support@ yahoogroups. comTo: Breathe-Support@ yahoogroups. comSubject: UIP/IPFDate: Sun, 11 May 2008 23:20:01 -0700 (PDT)

Hi Everyone, My name is Godfrey and am new to this site. I've been diagnosed with UIP/IPF. Onset of symptoms was Dec. '05 after a flu-like illness in which "The Cough" would not go away. After seeing a myriad of doctors, and being treated for a sinus infection, it was confirmed by CT scan that I had "fibrotic changes" at the bases of my lungs. I've had approx. 17 x-rays over 2 years trying to figure out exactly what I have. I've been seen at the sdale Mayo Clinic in AZ (where I live) for the past year. I did not get any information about this disease from them either. I would not recommend them to anyone. All they want is money and a lot of it. I found a REALLY GOOD pulmonalogist in Phoenix, who is very knowlegable of this disease. I had the VATS surgery on April 30, '08. Hospital stay was 4 days. I am doing great, no pain at all. I still have that cough,

but it has lessened since I got prescribed Benzonatate (Tessalon Pearls). The VATS surgery confirmed the diagnosis, which I had to have in order to go into a research study. I am waiting my call any day now to start the study. I will be going on Bosentan (Tracleer). This drug has already been FDA approved for pulmonary arterial hypertension (which I do not have). They have opened up the study for 100 more people who have IPF without pulmonary hypertension, to see if it slows down or stops the fibrosing in the lung, as it has antifibrotic properties in this drug. It was either going into the study or starting the course of Imuran and Predisone. It was a "no brainer" for me, as I don't have any other underlying condition. Oh, I forgot, at the same time of the flu-like illness back in Dec. '05, after going to the doctor and having the tests run, I did have a slightly elevated TSH, so I have been taking a low

dose of Thyroid med. for hypothroidism. Other then that, I feel good, not on Oxygen yet; I have a finger oximerter that I use and levels tend to be in the 90's. Does anyone know about Bosentan or have been on it? There is also a new research study starting in July that I could go into. (Can't do both) It is a and drug for IPF, but will have to be closely monitered as it is a weekly IV drug. I don't know the name. Has anyone heard about this study? I'm originally from Seattle, WA and moved to AZ permanently after retiring from my job Nov. 2006. I just turned 62 on May 8th, so went and applied for SS. Hurrah!

G IPF/UIP 5/07 AZ

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