Guest guest Posted August 14, 2008 Report Share Posted August 14, 2008 I'm assuming you're on Imuran and Prednisone? All I know does say they are right for both of your diseases. There is also a myositis support group on Yahoo you might find good. Ourmyositis is the name. With the possibility I have polymyositis I have started reading there although not posting. > > > > > > > > > > Hi all, > > > > > > > > > > I live in the Dallas area and just got back from spending a 4 > > week > > > > > vacation in Los Angeles. I took the kids to see their > > grandparents > > > > > and friends. While I was there I was able to get an > > appointment at > > > > > UCLA-Pulmonary & Critical Care. The pulmonologist said that I > > did > > > > in > > > > > fact have Dermatomyositis and NSIP. He said that this will > > not > > > > turn > > > > > into Pulmonary Fibrosis. I'm looking for any opinions on > > this. > > > > > Sounds too good to be true. My pulmonologist here has always > > taken > > > > > the " wait & see " road. This pulmonologist at UCLA was > > confident > > > > about > > > > > his evaluation. > > > > > > > > > > Any thoughts would be greatly appreciated, > > > > > > > > > > > > > > > 40/Tx: IPF, NSIP dx 09/2007 VATS > > > > > Pneumomediastinum, Atrial Fibrillations, Hiatal Hernia, and > > > > possibly > > > > > Dermatomyositis > > > > > 125mg Imuran / 10mg Prednisone / 25mg Metoprolol / 1,000mg > > Niaspan > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2008 Report Share Posted August 14, 2008 I'm assuming you're on Imuran and Prednisone? All I know does say they are right for both of your diseases. There is also a myositis support group on Yahoo you might find good. Ourmyositis is the name. With the possibility I have polymyositis I have started reading there although not posting. > > > > > > > > > > Hi all, > > > > > > > > > > I live in the Dallas area and just got back from spending a 4 > > week > > > > > vacation in Los Angeles. I took the kids to see their > > grandparents > > > > > and friends. While I was there I was able to get an > > appointment at > > > > > UCLA-Pulmonary & Critical Care. The pulmonologist said that I > > did > > > > in > > > > > fact have Dermatomyositis and NSIP. He said that this will > > not > > > > turn > > > > > into Pulmonary Fibrosis. I'm looking for any opinions on > > this. > > > > > Sounds too good to be true. My pulmonologist here has always > > taken > > > > > the " wait & see " road. This pulmonologist at UCLA was > > confident > > > > about > > > > > his evaluation. > > > > > > > > > > Any thoughts would be greatly appreciated, > > > > > > > > > > > > > > > 40/Tx: IPF, NSIP dx 09/2007 VATS > > > > > Pneumomediastinum, Atrial Fibrillations, Hiatal Hernia, and > > > > possibly > > > > > Dermatomyositis > > > > > 125mg Imuran / 10mg Prednisone / 25mg Metoprolol / 1,000mg > > Niaspan > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2008 Report Share Posted August 14, 2008 I'm assuming you're on Imuran and Prednisone? All I know does say they are right for both of your diseases. There is also a myositis support group on Yahoo you might find good. Ourmyositis is the name. With the possibility I have polymyositis I have started reading there although not posting. > > > > > > > > > > Hi all, > > > > > > > > > > I live in the Dallas area and just got back from spending a 4 > > week > > > > > vacation in Los Angeles. I took the kids to see their > > grandparents > > > > > and friends. While I was there I was able to get an > > appointment at > > > > > UCLA-Pulmonary & Critical Care. The pulmonologist said that I > > did > > > > in > > > > > fact have Dermatomyositis and NSIP. He said that this will > > not > > > > turn > > > > > into Pulmonary Fibrosis. I'm looking for any opinions on > > this. > > > > > Sounds too good to be true. My pulmonologist here has always > > taken > > > > > the " wait & see " road. This pulmonologist at UCLA was > > confident > > > > about > > > > > his evaluation. > > > > > > > > > > Any thoughts would be greatly appreciated, > > > > > > > > > > > > > > > 40/Tx: IPF, NSIP dx 09/2007 VATS > > > > > Pneumomediastinum, Atrial Fibrillations, Hiatal Hernia, and > > > > possibly > > > > > Dermatomyositis > > > > > 125mg Imuran / 10mg Prednisone / 25mg Metoprolol / 1,000mg > > Niaspan > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2008 Report Share Posted August 14, 2008 Bruce, I had an MRI on Tuesday the 12th and got a call yesterday that there is only mild inflammation in my thighs. They scanned the thighs since this is where Dermatomyositis affects the most. Driving to LA caused severe muscle pain and if the MRI said mild inflammation I would hate to know what moderate or severe feels like! This is what the pulmonologist said...get the autoimmune condition under control and the NSIP will follow suit. Yes, the pneumomediastinum (air leaking from lungs into chest) is annoying but I'm learning the hard way to pace myself. By the way...it was in the 80's in LA and I was flopping around in my mother-in-law's pool. Sure glad I missed those 105's here! > > > > > > > > Hi all, > > > > > > > > I live in the Dallas area and just got back from spending a 4 week > > > > vacation in Los Angeles. I took the kids to see their grandparents > > > > and friends. While I was there I was able to get an appointment at > > > > UCLA-Pulmonary & Critical Care. The pulmonologist said that I did > > > in > > > > fact have Dermatomyositis and NSIP. He said that this will not > > > turn > > > > into Pulmonary Fibrosis. I'm looking for any opinions on this. > > > > Sounds too good to be true. My pulmonologist here has always taken > > > > the " wait & see " road. This pulmonologist at UCLA was confident > > > about > > > > his evaluation. > > > > > > > > Any thoughts would be greatly appreciated, > > > > > > > > > > > > 40/Tx: IPF, NSIP dx 09/2007 VATS > > > > Pneumomediastinum, Atrial Fibrillations, Hiatal Hernia, and > > > possibly > > > > Dermatomyositis > > > > 125mg Imuran / 10mg Prednisone / 25mg Metoprolol / 1,000mg Niaspan > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2008 Report Share Posted August 14, 2008 Bruce, I had an MRI on Tuesday the 12th and got a call yesterday that there is only mild inflammation in my thighs. They scanned the thighs since this is where Dermatomyositis affects the most. Driving to LA caused severe muscle pain and if the MRI said mild inflammation I would hate to know what moderate or severe feels like! This is what the pulmonologist said...get the autoimmune condition under control and the NSIP will follow suit. Yes, the pneumomediastinum (air leaking from lungs into chest) is annoying but I'm learning the hard way to pace myself. By the way...it was in the 80's in LA and I was flopping around in my mother-in-law's pool. Sure glad I missed those 105's here! > > > > > > > > Hi all, > > > > > > > > I live in the Dallas area and just got back from spending a 4 week > > > > vacation in Los Angeles. I took the kids to see their grandparents > > > > and friends. While I was there I was able to get an appointment at > > > > UCLA-Pulmonary & Critical Care. The pulmonologist said that I did > > > in > > > > fact have Dermatomyositis and NSIP. He said that this will not > > > turn > > > > into Pulmonary Fibrosis. I'm looking for any opinions on this. > > > > Sounds too good to be true. My pulmonologist here has always taken > > > > the " wait & see " road. This pulmonologist at UCLA was confident > > > about > > > > his evaluation. > > > > > > > > Any thoughts would be greatly appreciated, > > > > > > > > > > > > 40/Tx: IPF, NSIP dx 09/2007 VATS > > > > Pneumomediastinum, Atrial Fibrillations, Hiatal Hernia, and > > > possibly > > > > Dermatomyositis > > > > 125mg Imuran / 10mg Prednisone / 25mg Metoprolol / 1,000mg Niaspan > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2008 Report Share Posted August 14, 2008 Oh, I liked you up until the flopping around in pool in 80's part...lol I'm assuming you've had an EEG and tons of bloodwork. I'm in process of waiting for another muscle enzyme blood test that I did while not exercizing and scheduling another EEG. Fortunately, I'm not experiencing any severe muscle or joint pain. So, there is no concensus on whether I have an autoimmune or not. My next appointment with Rheumatologist is September 17. > > > > > > > > > > Hi all, > > > > > > > > > > I live in the Dallas area and just got back from spending a 4 week > > > > > vacation in Los Angeles. I took the kids to see their grandparents > > > > > and friends. While I was there I was able to get an appointment at > > > > > UCLA-Pulmonary & Critical Care. The pulmonologist said that I did > > > > in > > > > > fact have Dermatomyositis and NSIP. He said that this will not > > > > turn > > > > > into Pulmonary Fibrosis. I'm looking for any opinions on this. > > > > > Sounds too good to be true. My pulmonologist here has always taken > > > > > the " wait & see " road. This pulmonologist at UCLA was confident > > > > about > > > > > his evaluation. > > > > > > > > > > Any thoughts would be greatly appreciated, > > > > > > > > > > > > > > > 40/Tx: IPF, NSIP dx 09/2007 VATS > > > > > Pneumomediastinum, Atrial Fibrillations, Hiatal Hernia, and > > > > possibly > > > > > Dermatomyositis > > > > > 125mg Imuran / 10mg Prednisone / 25mg Metoprolol / 1,000mg Niaspan > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2008 Report Share Posted August 14, 2008 Oh, I liked you up until the flopping around in pool in 80's part...lol I'm assuming you've had an EEG and tons of bloodwork. I'm in process of waiting for another muscle enzyme blood test that I did while not exercizing and scheduling another EEG. Fortunately, I'm not experiencing any severe muscle or joint pain. So, there is no concensus on whether I have an autoimmune or not. My next appointment with Rheumatologist is September 17. > > > > > > > > > > Hi all, > > > > > > > > > > I live in the Dallas area and just got back from spending a 4 week > > > > > vacation in Los Angeles. I took the kids to see their grandparents > > > > > and friends. While I was there I was able to get an appointment at > > > > > UCLA-Pulmonary & Critical Care. The pulmonologist said that I did > > > > in > > > > > fact have Dermatomyositis and NSIP. He said that this will not > > > > turn > > > > > into Pulmonary Fibrosis. I'm looking for any opinions on this. > > > > > Sounds too good to be true. My pulmonologist here has always taken > > > > > the " wait & see " road. This pulmonologist at UCLA was confident > > > > about > > > > > his evaluation. > > > > > > > > > > Any thoughts would be greatly appreciated, > > > > > > > > > > > > > > > 40/Tx: IPF, NSIP dx 09/2007 VATS > > > > > Pneumomediastinum, Atrial Fibrillations, Hiatal Hernia, and > > > > possibly > > > > > Dermatomyositis > > > > > 125mg Imuran / 10mg Prednisone / 25mg Metoprolol / 1,000mg Niaspan > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2008 Report Share Posted August 14, 2008 Bruce, They all agree (6 pulmonologists in total) that Imuran and Prednisone are the right meds for NSIP & Dermatomyositis. So that has been comforting. I will check out the group you referred to. There is also one I found at myositis.org. You have to register your contact info first then you can read posts. Let's do lunch again!, > > > > > > > > > > > > Hi all, > > > > > > > > > > > > I live in the Dallas area and just got back from spending a 4 > > > week > > > > > > vacation in Los Angeles. I took the kids to see their > > > grandparents > > > > > > and friends. While I was there I was able to get an > > > appointment at > > > > > > UCLA-Pulmonary & Critical Care. The pulmonologist said that I > > > did > > > > > in > > > > > > fact have Dermatomyositis and NSIP. He said that this will > > > not > > > > > turn > > > > > > into Pulmonary Fibrosis. I'm looking for any opinions on > > > this. > > > > > > Sounds too good to be true. My pulmonologist here has always > > > taken > > > > > > the " wait & see " road. This pulmonologist at UCLA was > > > confident > > > > > about > > > > > > his evaluation. > > > > > > > > > > > > Any thoughts would be greatly appreciated, > > > > > > > > > > > > > > > > > > 40/Tx: IPF, NSIP dx 09/2007 VATS > > > > > > Pneumomediastinum, Atrial Fibrillations, Hiatal Hernia, and > > > > > possibly > > > > > > Dermatomyositis > > > > > > 125mg Imuran / 10mg Prednisone / 25mg Metoprolol / 1,000mg > > > Niaspan > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2008 Report Share Posted August 14, 2008 Bruce, They all agree (6 pulmonologists in total) that Imuran and Prednisone are the right meds for NSIP & Dermatomyositis. So that has been comforting. I will check out the group you referred to. There is also one I found at myositis.org. You have to register your contact info first then you can read posts. Let's do lunch again!, > > > > > > > > > > > > Hi all, > > > > > > > > > > > > I live in the Dallas area and just got back from spending a 4 > > > week > > > > > > vacation in Los Angeles. I took the kids to see their > > > grandparents > > > > > > and friends. While I was there I was able to get an > > > appointment at > > > > > > UCLA-Pulmonary & Critical Care. The pulmonologist said that I > > > did > > > > > in > > > > > > fact have Dermatomyositis and NSIP. He said that this will > > > not > > > > > turn > > > > > > into Pulmonary Fibrosis. I'm looking for any opinions on > > > this. > > > > > > Sounds too good to be true. My pulmonologist here has always > > > taken > > > > > > the " wait & see " road. This pulmonologist at UCLA was > > > confident > > > > > about > > > > > > his evaluation. > > > > > > > > > > > > Any thoughts would be greatly appreciated, > > > > > > > > > > > > > > > > > > 40/Tx: IPF, NSIP dx 09/2007 VATS > > > > > > Pneumomediastinum, Atrial Fibrillations, Hiatal Hernia, and > > > > > possibly > > > > > > Dermatomyositis > > > > > > 125mg Imuran / 10mg Prednisone / 25mg Metoprolol / 1,000mg > > > Niaspan > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2008 Report Share Posted August 14, 2008 Bruce, They all agree (6 pulmonologists in total) that Imuran and Prednisone are the right meds for NSIP & Dermatomyositis. So that has been comforting. I will check out the group you referred to. There is also one I found at myositis.org. You have to register your contact info first then you can read posts. Let's do lunch again!, > > > > > > > > > > > > Hi all, > > > > > > > > > > > > I live in the Dallas area and just got back from spending a 4 > > > week > > > > > > vacation in Los Angeles. I took the kids to see their > > > grandparents > > > > > > and friends. While I was there I was able to get an > > > appointment at > > > > > > UCLA-Pulmonary & Critical Care. The pulmonologist said that I > > > did > > > > > in > > > > > > fact have Dermatomyositis and NSIP. He said that this will > > > not > > > > > turn > > > > > > into Pulmonary Fibrosis. I'm looking for any opinions on > > > this. > > > > > > Sounds too good to be true. My pulmonologist here has always > > > taken > > > > > > the " wait & see " road. This pulmonologist at UCLA was > > > confident > > > > > about > > > > > > his evaluation. > > > > > > > > > > > > Any thoughts would be greatly appreciated, > > > > > > > > > > > > > > > > > > 40/Tx: IPF, NSIP dx 09/2007 VATS > > > > > > Pneumomediastinum, Atrial Fibrillations, Hiatal Hernia, and > > > > > possibly > > > > > > Dermatomyositis > > > > > > 125mg Imuran / 10mg Prednisone / 25mg Metoprolol / 1,000mg > > > Niaspan > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2008 Report Share Posted August 14, 2008 Bruce, I had an EMG and NVC (nerve velocity conduction?). My bloodwork keeps coming back in the normal range and my rhuematologist and pulmonologist say it is because I am on the right medication (Prednisone & Imuran) so the CPK numbers are fine which is masking a proper diagnosis. > > > > > > > > > > > > Hi all, > > > > > > > > > > > > I live in the Dallas area and just got back from spending a 4 > week > > > > > > vacation in Los Angeles. I took the kids to see their > grandparents > > > > > > and friends. While I was there I was able to get an > appointment at > > > > > > UCLA-Pulmonary & Critical Care. The pulmonologist said that I > did > > > > > in > > > > > > fact have Dermatomyositis and NSIP. He said that this will not > > > > > turn > > > > > > into Pulmonary Fibrosis. I'm looking for any opinions on this. > > > > > > Sounds too good to be true. My pulmonologist here has always > taken > > > > > > the " wait & see " road. This pulmonologist at UCLA was > confident > > > > > about > > > > > > his evaluation. > > > > > > > > > > > > Any thoughts would be greatly appreciated, > > > > > > > > > > > > > > > > > > 40/Tx: IPF, NSIP dx 09/2007 VATS > > > > > > Pneumomediastinum, Atrial Fibrillations, Hiatal Hernia, and > > > > > possibly > > > > > > Dermatomyositis > > > > > > 125mg Imuran / 10mg Prednisone / 25mg Metoprolol / 1,000mg > Niaspan > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2008 Report Share Posted August 14, 2008 Well, I'm about to have another EMG. But my previous ones have been ok. On the other hand my ESR, CRP, CPK, Aldolase, and ANA are elevated to go with swollen lymph nodes, GERD and a patulous esophagus. So, more tests and meanwhile I just keep doing what I have been. Would you refresh me as to what levels of prednisone you are on? > > > > > > > > > > > > > > Hi all, > > > > > > > > > > > > > > I live in the Dallas area and just got back from spending a 4 > > week > > > > > > > vacation in Los Angeles. I took the kids to see their > > grandparents > > > > > > > and friends. While I was there I was able to get an > > appointment at > > > > > > > UCLA-Pulmonary & Critical Care. The pulmonologist said that I > > did > > > > > > in > > > > > > > fact have Dermatomyositis and NSIP. He said that this will not > > > > > > turn > > > > > > > into Pulmonary Fibrosis. I'm looking for any opinions on this. > > > > > > > Sounds too good to be true. My pulmonologist here has always > > taken > > > > > > > the " wait & see " road. This pulmonologist at UCLA was > > confident > > > > > > about > > > > > > > his evaluation. > > > > > > > > > > > > > > Any thoughts would be greatly appreciated, > > > > > > > > > > > > > > > > > > > > > 40/Tx: IPF, NSIP dx 09/2007 VATS > > > > > > > Pneumomediastinum, Atrial Fibrillations, Hiatal Hernia, and > > > > > > possibly > > > > > > > Dermatomyositis > > > > > > > 125mg Imuran / 10mg Prednisone / 25mg Metoprolol / 1,000mg > > Niaspan > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2008 Report Share Posted August 14, 2008 Well, I'm about to have another EMG. But my previous ones have been ok. On the other hand my ESR, CRP, CPK, Aldolase, and ANA are elevated to go with swollen lymph nodes, GERD and a patulous esophagus. So, more tests and meanwhile I just keep doing what I have been. Would you refresh me as to what levels of prednisone you are on? > > > > > > > > > > > > > > Hi all, > > > > > > > > > > > > > > I live in the Dallas area and just got back from spending a 4 > > week > > > > > > > vacation in Los Angeles. I took the kids to see their > > grandparents > > > > > > > and friends. While I was there I was able to get an > > appointment at > > > > > > > UCLA-Pulmonary & Critical Care. The pulmonologist said that I > > did > > > > > > in > > > > > > > fact have Dermatomyositis and NSIP. He said that this will not > > > > > > turn > > > > > > > into Pulmonary Fibrosis. I'm looking for any opinions on this. > > > > > > > Sounds too good to be true. My pulmonologist here has always > > taken > > > > > > > the " wait & see " road. This pulmonologist at UCLA was > > confident > > > > > > about > > > > > > > his evaluation. > > > > > > > > > > > > > > Any thoughts would be greatly appreciated, > > > > > > > > > > > > > > > > > > > > > 40/Tx: IPF, NSIP dx 09/2007 VATS > > > > > > > Pneumomediastinum, Atrial Fibrillations, Hiatal Hernia, and > > > > > > possibly > > > > > > > Dermatomyositis > > > > > > > 125mg Imuran / 10mg Prednisone / 25mg Metoprolol / 1,000mg > > Niaspan > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2008 Report Share Posted August 14, 2008 Well, I'm about to have another EMG. But my previous ones have been ok. On the other hand my ESR, CRP, CPK, Aldolase, and ANA are elevated to go with swollen lymph nodes, GERD and a patulous esophagus. So, more tests and meanwhile I just keep doing what I have been. Would you refresh me as to what levels of prednisone you are on? > > > > > > > > > > > > > > Hi all, > > > > > > > > > > > > > > I live in the Dallas area and just got back from spending a 4 > > week > > > > > > > vacation in Los Angeles. I took the kids to see their > > grandparents > > > > > > > and friends. While I was there I was able to get an > > appointment at > > > > > > > UCLA-Pulmonary & Critical Care. The pulmonologist said that I > > did > > > > > > in > > > > > > > fact have Dermatomyositis and NSIP. He said that this will not > > > > > > turn > > > > > > > into Pulmonary Fibrosis. I'm looking for any opinions on this. > > > > > > > Sounds too good to be true. My pulmonologist here has always > > taken > > > > > > > the " wait & see " road. This pulmonologist at UCLA was > > confident > > > > > > about > > > > > > > his evaluation. > > > > > > > > > > > > > > Any thoughts would be greatly appreciated, > > > > > > > > > > > > > > > > > > > > > 40/Tx: IPF, NSIP dx 09/2007 VATS > > > > > > > Pneumomediastinum, Atrial Fibrillations, Hiatal Hernia, and > > > > > > possibly > > > > > > > Dermatomyositis > > > > > > > 125mg Imuran / 10mg Prednisone / 25mg Metoprolol / 1,000mg > > Niaspan > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2008 Report Share Posted August 14, 2008 Bruce, I am on 10mg Prednisone & 125mg Imuran. I was originally on 60mg Prednisone but I wasn't responding like they thought I should. The pulmonologist weaned me down to 10mgs and simultaneously introduced the Imuran at 25mg and kept upping the Imuran to now 125mg. > > > > > > > > > > > > > > > > Hi all, > > > > > > > > > > > > > > > > I live in the Dallas area and just got back from spending > a 4 > > > week > > > > > > > > vacation in Los Angeles. I took the kids to see their > > > grandparents > > > > > > > > and friends. While I was there I was able to get an > > > appointment at > > > > > > > > UCLA-Pulmonary & Critical Care. The pulmonologist said > that I > > > did > > > > > > > in > > > > > > > > fact have Dermatomyositis and NSIP. He said that this will > not > > > > > > > turn > > > > > > > > into Pulmonary Fibrosis. I'm looking for any opinions on > this. > > > > > > > > Sounds too good to be true. My pulmonologist here has > always > > > taken > > > > > > > > the " wait & see " road. This pulmonologist at UCLA was > > > confident > > > > > > > about > > > > > > > > his evaluation. > > > > > > > > > > > > > > > > Any thoughts would be greatly appreciated, > > > > > > > > > > > > > > > > > > > > > > > > 40/Tx: IPF, NSIP dx 09/2007 VATS > > > > > > > > Pneumomediastinum, Atrial Fibrillations, Hiatal Hernia, > and > > > > > > > possibly > > > > > > > > Dermatomyositis > > > > > > > > 125mg Imuran / 10mg Prednisone / 25mg Metoprolol / 1,000mg > > > Niaspan > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2008 Report Share Posted August 14, 2008 Bruce, I am on 10mg Prednisone & 125mg Imuran. I was originally on 60mg Prednisone but I wasn't responding like they thought I should. The pulmonologist weaned me down to 10mgs and simultaneously introduced the Imuran at 25mg and kept upping the Imuran to now 125mg. > > > > > > > > > > > > > > > > Hi all, > > > > > > > > > > > > > > > > I live in the Dallas area and just got back from spending > a 4 > > > week > > > > > > > > vacation in Los Angeles. I took the kids to see their > > > grandparents > > > > > > > > and friends. While I was there I was able to get an > > > appointment at > > > > > > > > UCLA-Pulmonary & Critical Care. The pulmonologist said > that I > > > did > > > > > > > in > > > > > > > > fact have Dermatomyositis and NSIP. He said that this will > not > > > > > > > turn > > > > > > > > into Pulmonary Fibrosis. I'm looking for any opinions on > this. > > > > > > > > Sounds too good to be true. My pulmonologist here has > always > > > taken > > > > > > > > the " wait & see " road. This pulmonologist at UCLA was > > > confident > > > > > > > about > > > > > > > > his evaluation. > > > > > > > > > > > > > > > > Any thoughts would be greatly appreciated, > > > > > > > > > > > > > > > > > > > > > > > > 40/Tx: IPF, NSIP dx 09/2007 VATS > > > > > > > > Pneumomediastinum, Atrial Fibrillations, Hiatal Hernia, > and > > > > > > > possibly > > > > > > > > Dermatomyositis > > > > > > > > 125mg Imuran / 10mg Prednisone / 25mg Metoprolol / 1,000mg > > > Niaspan > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2008 Report Share Posted August 14, 2008 Bruce, I am on 10mg Prednisone & 125mg Imuran. I was originally on 60mg Prednisone but I wasn't responding like they thought I should. The pulmonologist weaned me down to 10mgs and simultaneously introduced the Imuran at 25mg and kept upping the Imuran to now 125mg. > > > > > > > > > > > > > > > > Hi all, > > > > > > > > > > > > > > > > I live in the Dallas area and just got back from spending > a 4 > > > week > > > > > > > > vacation in Los Angeles. I took the kids to see their > > > grandparents > > > > > > > > and friends. While I was there I was able to get an > > > appointment at > > > > > > > > UCLA-Pulmonary & Critical Care. The pulmonologist said > that I > > > did > > > > > > > in > > > > > > > > fact have Dermatomyositis and NSIP. He said that this will > not > > > > > > > turn > > > > > > > > into Pulmonary Fibrosis. I'm looking for any opinions on > this. > > > > > > > > Sounds too good to be true. My pulmonologist here has > always > > > taken > > > > > > > > the " wait & see " road. This pulmonologist at UCLA was > > > confident > > > > > > > about > > > > > > > > his evaluation. > > > > > > > > > > > > > > > > Any thoughts would be greatly appreciated, > > > > > > > > > > > > > > > > > > > > > > > > 40/Tx: IPF, NSIP dx 09/2007 VATS > > > > > > > > Pneumomediastinum, Atrial Fibrillations, Hiatal Hernia, > and > > > > > > > possibly > > > > > > > > Dermatomyositis > > > > > > > > 125mg Imuran / 10mg Prednisone / 25mg Metoprolol / 1,000mg > > > Niaspan > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2008 Report Share Posted August 14, 2008 Bruce, I have not quite fully digested your original information, but gathered a lot from your interaction with . Since my " ILD " is tied to my autoimmune AOSD (Adult Onset Stills Disease, but thought I would just toss in a new set of initials for you, LOL) that I seem to be on the correct medications at this stage. I am currently on 25mg Prednisone (recently tapered from 80mg), 150mg Imuran and 10mg/kg of Remicade every 6 weeks. As you mentioned, a lot of this needs to be controlled by keeping the AOSD under control. My wife believes (and I now concur, after reading all your " stuff " ) that I might not have gotten out of control and to the lungs if I had not had to have a deep Squamous Cell Carcinoma removed from my scalp. The incision got infected and led to me, obviously, having to hold off on my all my AOSD meds (MTX and Remicade) let the AOSD get out of control. I was off the meds from the begining of Nov 07 until Feb 08. Then the lungs started going South the end of Feb 08. The Pulmonologist and Rheumatologist are in the same group practice and work down the hall from each other. They have indicated that just what you have, that the AOSD control is critical at this point. Of course, breathing is at the top of the list also. Now I have some good questions to ask to my Pulmonary on Monday. Thanks greatly to everyone. Tom from PA (and eventually I will figure all the initials I need to add) > > Bruce, > > I am on 10mg Prednisone & 125mg Imuran. I was originally on 60mg > Prednisone but I wasn't responding like they thought I should. The > pulmonologist weaned me down to 10mgs and simultaneously introduced > the Imuran at 25mg and kept upping the Imuran to now 125mg. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2008 Report Share Posted August 14, 2008 Bruce, I have not quite fully digested your original information, but gathered a lot from your interaction with . Since my " ILD " is tied to my autoimmune AOSD (Adult Onset Stills Disease, but thought I would just toss in a new set of initials for you, LOL) that I seem to be on the correct medications at this stage. I am currently on 25mg Prednisone (recently tapered from 80mg), 150mg Imuran and 10mg/kg of Remicade every 6 weeks. As you mentioned, a lot of this needs to be controlled by keeping the AOSD under control. My wife believes (and I now concur, after reading all your " stuff " ) that I might not have gotten out of control and to the lungs if I had not had to have a deep Squamous Cell Carcinoma removed from my scalp. The incision got infected and led to me, obviously, having to hold off on my all my AOSD meds (MTX and Remicade) let the AOSD get out of control. I was off the meds from the begining of Nov 07 until Feb 08. Then the lungs started going South the end of Feb 08. The Pulmonologist and Rheumatologist are in the same group practice and work down the hall from each other. They have indicated that just what you have, that the AOSD control is critical at this point. Of course, breathing is at the top of the list also. Now I have some good questions to ask to my Pulmonary on Monday. Thanks greatly to everyone. Tom from PA (and eventually I will figure all the initials I need to add) > > Bruce, > > I am on 10mg Prednisone & 125mg Imuran. I was originally on 60mg > Prednisone but I wasn't responding like they thought I should. The > pulmonologist weaned me down to 10mgs and simultaneously introduced > the Imuran at 25mg and kept upping the Imuran to now 125mg. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2008 Report Share Posted August 14, 2008 Bruce, I have not quite fully digested your original information, but gathered a lot from your interaction with . Since my " ILD " is tied to my autoimmune AOSD (Adult Onset Stills Disease, but thought I would just toss in a new set of initials for you, LOL) that I seem to be on the correct medications at this stage. I am currently on 25mg Prednisone (recently tapered from 80mg), 150mg Imuran and 10mg/kg of Remicade every 6 weeks. As you mentioned, a lot of this needs to be controlled by keeping the AOSD under control. My wife believes (and I now concur, after reading all your " stuff " ) that I might not have gotten out of control and to the lungs if I had not had to have a deep Squamous Cell Carcinoma removed from my scalp. The incision got infected and led to me, obviously, having to hold off on my all my AOSD meds (MTX and Remicade) let the AOSD get out of control. I was off the meds from the begining of Nov 07 until Feb 08. Then the lungs started going South the end of Feb 08. The Pulmonologist and Rheumatologist are in the same group practice and work down the hall from each other. They have indicated that just what you have, that the AOSD control is critical at this point. Of course, breathing is at the top of the list also. Now I have some good questions to ask to my Pulmonary on Monday. Thanks greatly to everyone. Tom from PA (and eventually I will figure all the initials I need to add) > > Bruce, > > I am on 10mg Prednisone & 125mg Imuran. I was originally on 60mg > Prednisone but I wasn't responding like they thought I should. The > pulmonologist weaned me down to 10mgs and simultaneously introduced > the Imuran at 25mg and kept upping the Imuran to now 125mg. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2008 Report Share Posted August 14, 2008 Tom, I am curious about what you think about Remicade. I am on Prednisone & Imuran and someone suggested I ask about Remicade. Isn't that expensive? Do you have any serious side effects? > > > > Bruce, > > > > I am on 10mg Prednisone & 125mg Imuran. I was originally on 60mg > > Prednisone but I wasn't responding like they thought I should. The > > pulmonologist weaned me down to 10mgs and simultaneously introduced > > the Imuran at 25mg and kept upping the Imuran to now 125mg. > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2008 Report Share Posted August 14, 2008 Tom, I am curious about what you think about Remicade. I am on Prednisone & Imuran and someone suggested I ask about Remicade. Isn't that expensive? Do you have any serious side effects? > > > > Bruce, > > > > I am on 10mg Prednisone & 125mg Imuran. I was originally on 60mg > > Prednisone but I wasn't responding like they thought I should. The > > pulmonologist weaned me down to 10mgs and simultaneously introduced > > the Imuran at 25mg and kept upping the Imuran to now 125mg. > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2008 Report Share Posted August 14, 2008 Tom, I am curious about what you think about Remicade. I am on Prednisone & Imuran and someone suggested I ask about Remicade. Isn't that expensive? Do you have any serious side effects? > > > > Bruce, > > > > I am on 10mg Prednisone & 125mg Imuran. I was originally on 60mg > > Prednisone but I wasn't responding like they thought I should. The > > pulmonologist weaned me down to 10mgs and simultaneously introduced > > the Imuran at 25mg and kept upping the Imuran to now 125mg. > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2008 Report Share Posted August 14, 2008 Z. girl, you took the words right out of my mouth! When I was told I have NSIP I had kind of a "oh goodie, it's not PF" moment. But then Dr. said, "It's all PF" just different strains. Yep, it is what it is and I really don't need to know anymore... MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Re: NSIP & IPF , NSIP is a form of PF!!! There is fibrosis in the lung ...so it's PF in form that may be responsive to more therapieslike Predisone but it's still fibrosis!!!!You may need O2, you may be SOB you may cough!!!You may need another opinion!!!! Z 64, fibriotic NSIP/o5/PA And “mild” PH/10/07 and Reynaud’s too!! 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 <!--[if !supportEmptyParas]--> <!--[endif]--> <!--[if !supportEmptyParas]--> <!--[endif]--> Breese wrote: Hi all,I live in the Dallas area and just got back from spending a 4 weekvacation in Los Angeles. I took the kids to see their grandparentsand friends. While I was there I was able to get an appointment atUCLA-Pulmonary & Critical Care. The pulmonologist said that I did infact have Dermatomyositis and NSIP. He said that this will not turninto Pulmonary Fibrosis. I'm looking for any opinions on this. Sounds too good to be true. My pulmonologist here has always takenthe "wait & see" road. This pulmonologist at UCLA was confident abouthis evaluation.Any thoughts would be greatly appreciated, 40/Tx: IPF, NSIP dx 09/2007 VATSPneumomediastinum, Atrial Fibrillations, Hiatal Hernia, and possiblyDermatomyositis125mg Imuran / 10mg Prednisone / 25mg Metoprolol / 1,000mg NiaspanNo virus found in this incoming message. Checked by AVG - http://www.avg.com Version: 8.0.138 / Virus Database: 270.6.1/1608 - Release Date: 8/12/2008 4:59 PM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2008 Report Share Posted August 14, 2008 Z. girl, you took the words right out of my mouth! When I was told I have NSIP I had kind of a "oh goodie, it's not PF" moment. But then Dr. said, "It's all PF" just different strains. Yep, it is what it is and I really don't need to know anymore... MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Re: NSIP & IPF , NSIP is a form of PF!!! There is fibrosis in the lung ...so it's PF in form that may be responsive to more therapieslike Predisone but it's still fibrosis!!!!You may need O2, you may be SOB you may cough!!!You may need another opinion!!!! Z 64, fibriotic NSIP/o5/PA And “mild” PH/10/07 and Reynaud’s too!! 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 <!--[if !supportEmptyParas]--> <!--[endif]--> <!--[if !supportEmptyParas]--> <!--[endif]--> Breese wrote: Hi all,I live in the Dallas area and just got back from spending a 4 weekvacation in Los Angeles. I took the kids to see their grandparentsand friends. While I was there I was able to get an appointment atUCLA-Pulmonary & Critical Care. The pulmonologist said that I did infact have Dermatomyositis and NSIP. He said that this will not turninto Pulmonary Fibrosis. I'm looking for any opinions on this. Sounds too good to be true. My pulmonologist here has always takenthe "wait & see" road. This pulmonologist at UCLA was confident abouthis evaluation.Any thoughts would be greatly appreciated, 40/Tx: IPF, NSIP dx 09/2007 VATSPneumomediastinum, Atrial Fibrillations, Hiatal Hernia, and possiblyDermatomyositis125mg Imuran / 10mg Prednisone / 25mg Metoprolol / 1,000mg NiaspanNo virus found in this incoming message. Checked by AVG - http://www.avg.com Version: 8.0.138 / Virus Database: 270.6.1/1608 - Release Date: 8/12/2008 4:59 PM Quote Link to comment Share on other sites More sharing options...
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