Guest guest Posted May 13, 2009 Report Share Posted May 13, 2009 Ellen,I'm sure that someone will answer your post in more detail, but to be blunt once the lung is scarred (fibrosis) it cannot be repaired. So if diagnosed with it, it cannot be temporary. Perhaps there is an underlying cause which can be halted and that will definitely improve the specific condition and not add to the fibrosis (hypersensitivity pneumonitis comes to mind)I notice in your post, that you have sarcoidosis. I am one of two (that I'm aware of) on this board who also have sarcoid. from California and I'm from SC. There was another, Jon , but he left the group when diagnosed with sarcoid only. My sarcoid is stage 4 which has caused extensive fibrosis in my lungs. My sarcoid is also in my eyes, salivary glands and lymph glands. I am on prednisone, plaquenil and MTX which have finally begun to show some improvement after 1 year of treatment.Good luck with your treatment and journey.Roxanne, 59, South Carolina 2006 Asthma/ PF 2008 PF/ Sarcoidosis/Gerd Lady Slipper OrchidSubject: Fibrosis TemporyTo: Breathe-Support Date: Wednesday, May 13, 2009, 7:53 AM Is it possible that Fibrosis can be temporary? I wouldn't think so, however, before I answer someone who was told that she may have temporary fibrosis I wanted to be sure. She has heard "Fibrosis shows up, but not sure if it's permanent or temporary." I know the answer, guess I want to hear it from someone else. I am not an expert, just learning from reading responses from you all. I have only known about fibrosis since Jan 0-9, was told both of my lungs are in advanced stages. I was at first diagnosed with sarcoidosis in Sep 08 and have been on Oxy 24/7 since then. It seems like yesterday and 1,000 years ago. Thanks ellen Recession-proof vacation ideas. Find free things to do in the U.S. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 13, 2009 Report Share Posted May 13, 2009 Ellen,I'm sure that someone will answer your post in more detail, but to be blunt once the lung is scarred (fibrosis) it cannot be repaired. So if diagnosed with it, it cannot be temporary. Perhaps there is an underlying cause which can be halted and that will definitely improve the specific condition and not add to the fibrosis (hypersensitivity pneumonitis comes to mind)I notice in your post, that you have sarcoidosis. I am one of two (that I'm aware of) on this board who also have sarcoid. from California and I'm from SC. There was another, Jon , but he left the group when diagnosed with sarcoid only. My sarcoid is stage 4 which has caused extensive fibrosis in my lungs. My sarcoid is also in my eyes, salivary glands and lymph glands. I am on prednisone, plaquenil and MTX which have finally begun to show some improvement after 1 year of treatment.Good luck with your treatment and journey.Roxanne, 59, South Carolina 2006 Asthma/ PF 2008 PF/ Sarcoidosis/Gerd Lady Slipper OrchidSubject: Fibrosis TemporyTo: Breathe-Support Date: Wednesday, May 13, 2009, 7:53 AM Is it possible that Fibrosis can be temporary? I wouldn't think so, however, before I answer someone who was told that she may have temporary fibrosis I wanted to be sure. She has heard "Fibrosis shows up, but not sure if it's permanent or temporary." I know the answer, guess I want to hear it from someone else. I am not an expert, just learning from reading responses from you all. I have only known about fibrosis since Jan 0-9, was told both of my lungs are in advanced stages. I was at first diagnosed with sarcoidosis in Sep 08 and have been on Oxy 24/7 since then. It seems like yesterday and 1,000 years ago. Thanks ellen Recession-proof vacation ideas. Find free things to do in the U.S. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 13, 2009 Report Share Posted May 13, 2009 Roxanne, How did you know that you had sarcoid in the lymph glands? Mine get swollen and very tender sometimes and I have wondered if it means I am getting a sarcoid flareup. Also, what is the plaquenil and MTX for? Last question, how low are you on the prednisone now? I am still trying to come off of it and not sure I will be able to get lower than 5. Thanks Roxanne, R. (53) Sarcoid/PF 3/2006 Carlsbad, California From: polenellen (AT) aol (DOT) com <polenellen (AT) aol (DOT) com>Subject: Fibrosis TemporyTo: Breathe-Support@ yahoogroups. comDate: Wednesday, May 13, 2009, 7:53 AM Is it possible that Fibrosis can be temporary? I wouldn't think so, however, before I answer someone who was told that she may have temporary fibrosis I wanted to be sure. She has heard "Fibrosis shows up, but not sure if it's permanent or temporary." I know the answer, guess I want to hear it from someone else. I am not an expert, just learning from reading responses from you all. I have only known about fibrosis since Jan 0-9, was told both of my lungs are in advanced stages. I was at first diagnosed with sarcoidosis in Sep 08 and have been on Oxy 24/7 since then. It seems like yesterday and 1,000 years ago. Thanks ellen Recession-proof vacation ideas. Find free things to do in the U.S. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 13, 2009 Report Share Posted May 13, 2009 Hi ,My sarcoid was first suspected when I had a HRCT which when read, the radiologist said that it looked like sarcoid and recommended further testing. Additional bronscopic biopsy confirmed sarcoid and gallium scan identified all the locations. All 3 drugs, prednisone, plaquenil and MTX are being taken to reduce the inflammation of sarcoid. MTX was added in December due to lack of improvement with just the prednidsone and plaquenil. I have been reduced to 10mg of prednisone and have appt tomorrow with pulmo; hoping for another reduction! By the way, I started on 40 mg, reduced to 20 after 30 days and stayed on 20 for about 9 months. I reduced to 10 five months ago and had a terrible 2 weeks after this last reduction---horrible cough again, painful joints (worse than usual) and the all too familiar fatigue). I hope I can to eliminate it totally, as I am tired of feeling haywire..Roxanne, 59, South Carolina 2006 Asthma/ PF 2008 PF/ Sarcoidosis/Gerd Lady Slipper Orchid From: polenellen (AT) aol (DOT) com <polenellen (AT) aol (DOT) com>Subject: Fibrosis TemporyTo: Breathe-Support@ yahoogroups. comDate: Wednesday, May 13, 2009, 7:53 AM Is it possible that Fibrosis can be temporary? I wouldn't think so, however, before I answer someone who was told that she may have temporary fibrosis I wanted to be sure. She has heard "Fibrosis shows up, but not sure if it's permanent or temporary." I know the answer, guess I want to hear it from someone else. I am not an expert, just learning from reading responses from you all. I have only known about fibrosis since Jan 0-9, was told both of my lungs are in advanced stages. I was at first diagnosed with sarcoidosis in Sep 08 and have been on Oxy 24/7 since then. It seems like yesterday and 1,000 years ago. Thanks ellen Recession-proof vacation ideas. Find free things to do in the U.S. Quote Link to comment Share on other sites More sharing options...
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