Re: Re: NSIP & IPF

[Guest guest]

MB...glad you're having such a good time.

Keep on havin' more good times!

MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

Re: NSIP & IPF

NSIP is a form of Pulmonary Fibrosis. It comes under the heading. If heis using the term "IPF" to mean "UIP" as is often done, then it is adifferent form.Your advantage at this point is you have NSIP and a probable cause froma myositis. Beth is on the road but she has very similar with NSIPand an "undifferentiated connective tissue disease". I have UIP and mayor may not have an autoimmune depending on the doctor of the day.In your case the news sounds all good as there is not yet significantscarring. I would have suspected such just based on what you're able todo as the leakage appears to be causing more problems than the diseaseright now.As to the testing for Polymyositis and Dermatomyositis, I have beenthrough lots of that and am seeing a rheumatologist here in addition towhat was done at U of Chicago.Why he says it isn't likely to progress is that he is assuming themyositis to be the cause and if its progression is controlled then theNSIP would stabilize.UIP, NSIP and the others are all forms of pneumonitis.In a biopsy of NSIP the most visible thing generally is prominentinterstitial inflammation. In UIP there is very little. Fibroblastproliferation is also rare in NSIP, while prominant in UIP. Honeycombingis rare in NSIP but exists in UIP.To me the greatest value of the biopsy is differentiating UIP and NSIPsince they are so very different. So, while I wouldn't call anyInterstitial Lung Disease good, you do have as favorable one aspossible. This does put a high emphasis on controlling the myositis andyour rheumatologist will rise to the forefront of your treatment. Theother emphasis is monitoring and protecting other organs as it can, ifnot adequately controlled, affect organs other than the lungs such asthe kidneys.Oh, and welcome home. I know why you really went to LA. To avoid as many100 degree days as you could here....lol> > >> > > 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> > >> >>

[Guest guest]

Hi MB, I'm glad to hear you're enjoying yourself! IrenePF 03/07 Raynaud's Disease 09/07

Re: NSIP & IPF

NSIP is a form of Pulmonary Fibrosis. It comes under the heading. If heis using the term "IPF" to mean "UIP" as is often done, then it is adifferent form.Your advantage at this point is you have NSIP and a probable cause froma myositis. Beth is on the road but she has very similar with NSIPand an "undifferentiated connective tissue disease". I have UIP and mayor may not have an autoimmune depending on the doctor of the day.In your case the news sounds all good as there is not yet significantscarring. I would have suspected such just based on what you're able todo as the leakage appears to be causing more problems than the diseaseright now.As to the testing for Polymyositis and Dermatomyositis, I have beenthrough lots of that and am seeing a rheumatologist here in addition towhat was done at U of Chicago.Why he says it isn't likely to progress is that he is

assuming themyositis to be the cause and if its progression is controlled then theNSIP would stabilize.UIP, NSIP and the others are all forms of pneumonitis.In a biopsy of NSIP the most visible thing generally is prominentinterstitial inflammation. In UIP there is very little. Fibroblastproliferation is also rare in NSIP, while prominant in UIP. Honeycombingis rare in NSIP but exists in UIP.To me the greatest value of the biopsy is differentiating UIP and NSIPsince they are so very different. So, while I wouldn't call anyInterstitial Lung Disease good, you do have as favorable one aspossible. This does put a high emphasis on controlling the myositis andyour rheumatologist will rise to the forefront of your treatment. Theother emphasis is monitoring and protecting other organs as it can, ifnot adequately controlled, affect organs other than the lungs such asthe kidneys.Oh,

and welcome home. I know why you really went to LA. To avoid as many100 degree days as you could here....lol> > >> > > 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> > >> >>

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