Re: Prednisone, Azathioprine and N-acetyl crysteine, Clinical Trial for Bosentan,

[Guest guest]

Dilwala....how good to hear from you. It's been a long time!

I'm sure all these decisions to make create a lot of stress for you.

Gather all your information first and then the right decision will stand out.

I'm sorry to hear you are still having pain. I hope that goes away soon! These are reasons I do not want bio! I deal w/enough pain and other stuff.

I can't help w/any info on the drug cocktail about which you speak. someone will though.

Keep on keepin' on.

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

“Prednisone, Azathioprine and N-acetyl crysteine”, Clinical Trial for Bosentan,

Hope this finds the Air Family in good spirits.I visited UCSF in late March. Below are the excerpts from their panel after they reviewed my recent CT scan (taken on 3/21/2008) and pathology of the lung tissue (taken on 2/12/08).PFT: "studies are significant for mild restrictive lung disease with a severely reduced diffusion capacity". There is no evidence of obstructive lung disease.Radiology: CAT scan was significant for patchy, peripheral, primarily subpleural fibrosis which effects all levels of the lung. There was no honeycombing. It was also notable for focal areas of ground glass opacities peripherally which are consistent with organizing pneumonia. This is most consistent with fibrotic NSIP or less likely, hypersensitivity pneumonitis. Laboratory: rheumatoid factor is negative; angiotensin converting enzyme negative; ANCA negative; ANA negativePathology: The biopsy consisted of two samples; right middle lobe and right lower lobe. The right middle lobe sample was significant for patchy fibrosis which was not airway centered with scant fibroblastic foci and chronic interstitial inflammation. There was also macrophage accumulation around the respiratory bronchioles consistent with smoker's disease. The right lower lobe demonstrated contrast dense fibrosis with many more fibroblastic foci adjacent to areas of near normal lung. There was also some emphysema. Taken together, these findings are most consistent with UIP pattern.Assessment: The biopsy results are most consistent with UIP pattern. Given that there is little to support this patient has a rheumatological disease, the most likely clinical diagnosis for this pattern is idiopathic pulmonary fibrosis. This patient is on the younger side for the age that we typically see with this diagnosis. Also, there are some subtle features of his biopsy that are not classic for IPF; however, this may merely represent the effect of smoking. Plan/Options: Enroll in a clinical trial (I was asked to enroll in a trial named BUILD 3; a trial of bosentan in patients with biopsy proven IPF).Be treated with best guess therapy (prednisone, azathioprine and n-acetyl crysteine)Opt for no therapy as there are no proven effective therapies for IPFConsider referral for lung transplantation. The visit with the doctor was short. There was simply not enough time as there were other patients. Same was the case when the doctor called me after the panel discussed my case. However, I received a call from the nurse who spent over an hour on the phone and did her best to answer my questions. She stated that I don't have a lot of fibrosis but I do have a lot of inflammation. Her suggestion was to get on prednisone as "there is nothing better than prednisone when it comes to reducing inflammation". She also stated that I should not be concerned about the side affects. Side affects are directly related to the prolonged usage and higher strength. HowamIDoing: I still have the phantom pain after biopsy (done on 2/12/08). Pain is somewhat tolerable (i.e, one Vicodin/day, instead of three) but it remains.My 7th grade All-Net team made it to the National competition in Los Angeles. We lost the semi-final and took 4th place. The boys made me proud.It is ~6 hours drive to Southern California; I drove both ways with ease. The tournament schedule was hectic but I remained energetic. I also felt `easier to breath' when I was there, mainly in Anaheim. I noticed the difference as soon as I stepped out of the car in my driveway. It was absolutely astonishing. I don't' think it has anything to do with the sea level. They are about the same. I do live in the `foothills' but the height is not that significant. Something in that `air' which allowed me to breathe effortlessly. I will inquire from my Pulmo when I see him on 4/22. Does any one know why?Baseball season is underway. We are 2-3. Early part of the season is mainly for learning so we're on track. This is big field so boys are still adjusting.I don't do much except motivate and give instructions. I cannot throw the ball and/or hit the ball. It is mainly due to the affects of the biopsy.WhereamIGoing: So they (panel at UCSF) provide me with four options:Do Nothing: I don't like my chances if I do nothing.Clinical Trial: I would rather be treated than be in Placebo group for 18-24 months.Lung Transplant: Unless they tell me that there is no other choice I would like to stay away form highly invasive medical procedures.Thus I'm leaning towards the recommended drug cocktail. Please provide your input, pros/cons, your experience with these drugs and/or any info that you would like to share otherwise. I will see my Pulmo on 4/22 to start the treatment. Thanks, and God bless all,Dilwala, UIP 2/28 Southern California

[Guest guest]

Hi Dilwala, You have just reassured me on pain. My lung biopsy was on 2/08 and I am still having pain. Real or phantom, pain is pain. I'm still on oxycodone 10r trying to keep down to 1 a day. I have been on prednisone, azathioprene and N-acetyl cysteine for the most part of the last 15 months. It stabilized my sats until I had severe liver problems. I was taken off the az and my liver bounced right back. I was supposed to be gone in March. I like the no expiration date on bum term they use here. Heck every time a doc gives me a new expiration date, it gives me more energy to prove them wrong. Anyway I tend to keep going about two paragraphs longer than I should, but will let you and the board know my liver labs and new 6min mile as soon as I get them.

Steve59 from WA IPF 2006

Reply-To: Breathe-Support To: <Breathe-Support >Subject: Re: "Prednisone, Azathioprine and N-acetyl crysteine", Clinical Trial for Bosentan,Date: Wed, 9 Apr 2008 11:48:06 -0700

Dilwala....how good to hear from you. It's been a long time!

I'm sure all these decisions to make create a lot of stress for you.

Gather all your information first and then the right decision will stand out.

I'm sorry to hear you are still having pain. I hope that goes away soon! These are reasons I do not want bio! I deal w/enough pain and other stuff.

I can't help w/any info on the drug cocktail about which you speak. someone will though.

Keep on keepin' on.

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

“Prednisone, Azathioprine and N-acetyl crysteine”, Clinical Trial for Bosentan,

Hope this finds the Air Family in good spirits.I visited UCSF in late March. Below are the excerpts from their panel after they reviewed my recent CT scan (taken on 3/21/2008) and pathology of the lung tissue (taken on 2/12/08).PFT: "studies are significant for mild restrictive lung disease with a severely reduced diffusion capacity". There is no evidence of obstructive lung disease.Radiology: CAT scan was significant for patchy, peripheral, primarily subpleural fibrosis which effects all levels of the lung. There was no honeycombing. It was also notable for focal areas of ground glass opacities peripherally which are consistent with organizing pneumonia. This is most consistent with fibrotic NSIP or less likely, hypersensitivity pneumonitis. Laboratory: rheumatoid factor is negative; angiotensin converting enzyme negative; ANCA negative; ANA negativePathology: The biopsy consisted of two samples; right middle lobe and right lower lobe. The right middle lobe sample was significant for patchy fibrosis which was not airway centered with scant fibroblastic foci and chronic interstitial inflammation. There was also macrophage accumulation around the respiratory bronchioles consistent with smoker's disease. The right lower lobe demonstrated contrast dense fibrosis with many more fibroblastic foci adjacent to areas of near normal lung. There was also some emphysema. Taken together, these findings are most consistent with UIP pattern.Assessment: The biopsy results are most consistent with UIP pattern. Given that there is little to support this patient has a rheumatological disease, the most likely clinical diagnosis for this pattern is idiopathic pulmonary fibrosis. This patient is on the younger side for the age that we typically see with this diagnosis. Also, there are some subtle features of his biopsy that are not classic for IPF; however, this may merely represent the effect of smoking. Plan/Options: Enroll in a clinical trial (I was asked to enroll in a trial named BUILD 3; a trial of bosentan in patients with biopsy proven IPF).Be treated with best guess therapy (prednisone, azathioprine and n-acetyl crysteine)Opt for no therapy as there are no proven effective therapies for IPFConsider referral for lung transplantation. The visit with the doctor was short. There was simply not enough time as there were other patients. Same was the case when the doctor called me after the panel discussed my case. However, I received a call from the nurse who spent over an hour on the phone and did her best to answer my questions. She stated that I don't have a lot of fibrosis but I do have a lot of inflammation. Her suggestion was to get on prednisone as "there is nothing better than prednisone when it comes to reducing inflammation". She also stated that I should not be concerned about the side affects. Side affects are directly related to the prolonged usage and higher strength. HowamIDoing: I still have the phantom pain after biopsy (done on 2/12/08). Pain is somewhat tolerable (i.e, one Vicodin/day, instead of three) but it remains.My 7th grade All-Net team made it to the National competition in Los Angeles. We lost the semi-final and took 4th place. The boys made me proud.It is ~6 hours drive to Southern California; I drove both ways with ease. The tournament schedule was hectic but I remained energetic. I also felt `easier to breath' when I was there, mainly in Anaheim. I noticed the difference as soon as I stepped out of the car in my driveway. It was absolutely astonishing. I don't' think it has anything to do with the sea level. They are about the same. I do live in the `foothills' but the height is not that significant. Something in that `air' which allowed me to breathe effortlessly. I will inquire from my Pulmo when I see him on 4/22. Does any one know why?Baseball season is underway. We are 2-3. Early part of the season is mainly for learning so we're on track. This is big field so boys are still adjusting.I don't do much except motivate and give instructions. I cannot throw the ball and/or hit the ball. It is mainly due to the affects of the biopsy.WhereamIGoing: So they (panel at UCSF) provide me with four options:Do Nothing: I don't like my chances if I do nothing.Clinical Trial: I would rather be treated than be in Placebo group for 18-24 months.Lung Transplant: Unless they tell me that there is no other choice I would like to stay away form highly invasive medical procedures.Thus I'm leaning towards the recommended drug cocktail. Please provide your input, pros/cons, your experience with these drugs and/or any info that you would like to share otherwise. I will see my Pulmo on 4/22 to start the treatment. Thanks, and God bless all,Dilwala, UIP 2/28 Southern California

[Guest guest]

Hi Steve, I was Dx in 2004 and have decided I am going to be here for a few more years. Don't buy into the numbers and dates. This disease is just nasty to deal with. God Bless you with strength and peace in your life. Love and Prayers, PeggyIPF  2004,  Florida"Worry looks around, Sorry looks back,  Faith looks up." Hi Dilwala, You have just reassured me on pain. My lung biopsy was on 2/08 and I am still having pain. Real or phantom, pain is pain. I'm still on oxycodone 10r trying to keep down to 1 a day. I have been on prednisone, azathioprene and N-acetyl cysteine for the most part of the last 15 months. It stabilized my sats until I had severe liver problems. I was taken off the az and my liver bounced right back. I was supposed to be gone in March. I like the no expiration date on bum term they use here. Heck every time a doc gives me a new expiration date, it gives me more energy to prove them wrong. Anyway I tend to keep going about two paragraphs longer than I should, but will let you and the board know my liver labs and new 6min mile as soon as I get them.Steve59 from WA IPF 2006From: "Sher Bauman" <bofuswbcable (DOT) net>Reply-To: Breathe-Support To: <Breathe-Support >Subject: Re: "Prednisone, Azathioprine and N-acetyl crysteine", Clinical Trial for Bosentan,Date: Wed, 9 Apr 2008 11:48:06 -0700Dilwala....how good to hear from you. It's been a long time!I'm sure all these decisions to make create a lot of stress for you.Gather all your information first and then  the right decision will stand out.I'm sorry to hear you are still having pain. I hope that goes away soon! These are reasons I do not want bio! I deal w/enough pain and other stuff.I can't help w/any info on the drug cocktail about which you speak. someone will though.Keep on keepin' on. Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there!  “Prednisone, Azathioprine and N-acetyl crysteine”, Clinical Trial for Bosentan,Hope this finds the Air Family in good spirits.I visited UCSF in late March. Below are the excerpts from their panel after they reviewed my recent CT scan (taken on 3/21/2008) and pathology of the lung tissue (taken on 2/12/08).PFT: "studies are significant for mild restrictive lung disease with a severely reduced diffusion capacity". There is no evidence of obstructive lung disease.Radiology: CAT scan was significant for patchy, peripheral, primarily subpleural fibrosis which effects all levels of the lung. There was no honeycombing. It was also notable for focal areas of ground glass opacities peripherally which are consistent with organizing pneumonia. This is most consistent with fibrotic NSIP or less likely, hypersensitivity pneumonitis. Laboratory: rheumatoid factor is negative; angiotensin converting enzyme negative; ANCA negative; ANA negativePathology: The biopsy consisted of two samples; right middle lobe and right lower lobe. The right middle lobe sample was significant for patchy fibrosis which was not airway centered with scant fibroblastic foci and chronic interstitial inflammation. There was also macrophage accumulation around the respiratory bronchioles consistent with smoker's disease. The right lower lobe demonstrated contrast dense fibrosis with many more fibroblastic foci adjacent to areas of near normal lung. There was also some emphysema. Taken together, these findings are most consistent with UIP pattern.Assessment: The biopsy results are most consistent with UIP pattern. Given that there is little to support this patient has a rheumatological disease, the most likely clinical diagnosis for this pattern is idiopathic pulmonary fibrosis. This patient is on the younger side for the age that we typically see with this diagnosis. Also, there are some subtle features of his biopsy that are not classic for IPF; however, this may merely represent the effect of smoking. Plan/Options: Enroll in a clinical trial (I was asked to enroll in a trial named BUILD 3; a trial of bosentan in patients with biopsy proven IPF).Be treated with best guess therapy (prednisone, azathioprine and n-acetyl crysteine)Opt for no therapy as there are no proven effective therapies for IPFConsider referral for lung transplantation. The visit with the doctor was short. There was simply not enough time as there were other patients. Same was the case when the doctor called me after the panel discussed my case. However, I received a call from the nurse who spent over an hour on the phone and did her best to answer my questions. She stated that I don't have a lot of fibrosis but I do have a lot of inflammation. Her suggestion was to get on prednisone as "there is nothing better than prednisone when it comes to reducing inflammation". She also stated that I should not be concerned about the side affects. Side affects are directly related to the prolonged usage and higher strength. HowamIDoing: I still have the phantom pain after biopsy (done on 2/12/08). Pain is somewhat tolerable (i.e, one Vicodin/day, instead of three) but it remains.My 7th grade All-Net team made it to the National competition in Los Angeles. We lost the semi-final and took 4th place. The boys made me proud.It is ~6 hours drive to Southern California; I drove both ways with ease. The tournament schedule was hectic but I remained energetic. I also felt `easier to breath' when I was there, mainly in Anaheim. I noticed the difference as soon as I stepped out of the car in my driveway. It was absolutely astonishing. I don't' think it has anything to do with the sea level. They are about the same. I do live in the `foothills' but the height is not that significant. Something in that `air' which allowed me to breathe effortlessly. I will inquire from my Pulmo when I see him on 4/22. Does any one know why?Baseball season is underway. We are 2-3. Early part of the season is mainly for learning so we're on track. This is big field so boys are still adjusting.I don't do much except motivate and give instructions. I cannot throw the ball and/or hit the ball. It is mainly due to the affects of the biopsy.WhereamIGoing: So they (panel at UCSF) provide me with four options:Do Nothing: I don't like my chances if I do nothing.Clinical Trial: I would rather be treated than be in Placebo group for 18-24 months.Lung Transplant: Unless they tell me that there is no other choice I would like to stay away form highly invasive medical procedures.Thus I'm leaning towards the recommended drug cocktail. Please provide your input, pros/cons, your experience with these drugs and/or any info that you would like to share otherwise. I will see my Pulmo on 4/22 to start the treatment. Thanks, and God bless all,Dilwala, UIP 2/28 Southern California