Guest guest Posted August 13, 2008 Report Share Posted August 13, 2008 , NSIP is a form of PF!!! There is fibrosis in the lung .. ..so it's PF in form that may be responsive to more therapies like Predisone but it's still fibrosis!!!! You may need O2, you may be SOB you may cough!!! You may need another opinion!!!! Z fibriotic NSIP/05 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 Breese wrote: 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 No 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 13, 2008 Report Share Posted August 13, 2008 Well, its an excellent place to go but NSIP is a form of PF. Sure he didn't say it was not going to turn into IPF or UIP? Regardless, with an autoimmune (a myositis to be more precise) and NSIP then your prognosis is much better than if you had UIP. Imuran and Prednisone is the normal treatment and often effective with that combination. Did a pathologist there look at your biopsy slides also? Overall sounds like good news. > > 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 13, 2008 Report Share Posted August 13, 2008 You're right that he may need another opinion but I suspect its confusion over the term PF versus IPF. uses IPF in his subject and PF in the body. Many use them interchangeably but a pulmonologist there wouldn't likely do so. If his believe is that its NSIP caused by the Myositis or other known causes then its PF but its not Idiopathic. Now the other way the term IPF is often used is to just represent a subset of UIP-that is, UIP with no identifiable cause. So, NSIP would not turn into that either. Oh what tangled issue with all these words. But you do need to get the misunderstanding cleared . I'd call but also your written report should be specific when you get it, unless like my rheumatologist its typed by someone for whom English is not a first or good language and the doctor doesn't review it. > > > 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 > > > > > > > >No 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 HELP! This newbie is quite confused with some of the terminology and abbreviations used. Can someone simply post a list of abbreviations with their meaning. I do not need a full definition just simple one. for instance, PF = Pulmonary Fibrosis, etc. I do know that the " I " in " IPF " stands for Idiopathic (or Idiotpathic because the researchers just do not have the knowledge, yet. LOL) Also, from what I have read, IPF can be the most insidious variety, right? Obviously mine is related to my Still's Disease and related Sjrogrens (similar to RA or Lupus). But, what are my abbreviations? Tom from PA > > > > > You're right that he may need another opinion but I suspect its > confusion over the term PF versus IPF. uses IPF in his subject and > PF in the body. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2008 Report Share Posted August 14, 2008 Unless this UCLA doc has GOD written after his title somewhere, I would remember that even with all their training and expertise, all the docs in the world are only going with their best guess. He has no way of predicting the future. Hopes are he would be correct and you would not develop fibrosis. Hi ! S, Lubbock, TX NSIP w/PF et al > > 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 Tom Can't completely break the confusion. There are layman uses and technical medical uses and then those in between. First, these are all called Interstitial Lung Diseases (ILD). That is all these various forms of Fibrosis. Pulmonary Fibrosis (PF) then is used to designate all forms of the diseases causing fibrosis or scarring to the lungs. Now, the most confusing term is IPF or Idiopathic Pulmonary Fibrosis. We'd actually be better off not using it as confused as we've made it. Many times its used as a substitute for PF. Even PFF (Pulmonary Fibrosis Foundation) and CPF (Coalition for Pulmonary Fibrosis and IPFNet.org, the site for the 13 Centers of Excellence does this. Now, there is some logic behind calling all PF Idiopathic because in reality even when we think we have a probable known cause, do we really know? Now, lets look from a more technical and pathophysiology standpoint. http://www.clevelandclinicmeded.com/medicalpubs/diseasemanagement/pulmonary/idiopathic/idiopathic.htm#table1 Here we see the actual breakdowns of UIP (Usual Interstitial Pneumonitis), NSIP (Nonspecific Interstitial Pneumonitis, BOOP, RP-ILD, DIP, LIP, and AIP which are the primary out of over 200 forms identified right now. These are what your surgeon is looking to identify with a biopsy or your pulmonologist tries to from the CT. So the safest way is to think of the group as ILD's or PF's and these as the specific forms. Sometimes IPF is used interchangeably with UIP while other times used interchangeably with PF. So, its sort of lost its real definition. One may have UIP and it not be IPF if the doctors believe they know the cause. UIP caused by an autoimmune disease is no longer Idiopathic by truer definition. But then who knows cause and effect. Now why is any breakdown between the types even important? Because UIP, NSIP, BOOP, RP-ILD, DIP, LIP, and AIP are among those that have been identified as having different appearances and characteristics, different prognosis generally in terms of the course and speed and different responses to medications such as Imuran and Prednisone. Here is a table showing how they differ in appearance. http://www.clevelandclinicmeded.com/medicalpubs/diseasemanagement/pulmonary/idiopathic/table1.htm Here is a table showing the signs and prognosis. http://www.clevelandclinicmeded.com/medicalpubs/diseasemanagement/pulmonary/idiopathic/table2.htm Note that even that table is just one doctor's table. Everyone would have a different one. Also, who really knows which form. How many are yet undefined. How many subsets of UIP or NSIP. Honestly in many cases I think the form has been retroactively redefined based on its course. > >> > > > > > > > You're right that he may need another opinion but I suspect its> > confusion over the term PF versus IPF. uses IPF in his > subject and> > PF in the body.> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2008 Report Share Posted August 14, 2008 Hi all, My understanding was PF stands for Pulmonary Fibrosis (meaning the fibrosis came from smoking..for example) whereas, IPF stands for Idiopathic Pulmonary Fibrosis (meaning an unknown reason for the fibrosis). This pulmonologist at UCLA was saying that I only have NSIP (a form of pneumonia) due to an autoimmune condition which will not go into a fibrosing process. I believe one of the reasons he was saying this was because the lung biopsy report mentioned there is " not significant chronic scarring " and the pathologist would classify this as NSIP and suggests further testing for Polymyositis/Dermatomyositis. Thanks for all your help, > > > > 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 the NSIP w/PF can also come from some unknown source, such an an autoimmune that has not presented itself. It is not necessarily identifiable as to cause either. There are several of us on this board that are not and have not been smokers, did not inhale asbestos or work in coal mines. Who know where it comes from and it does not matter. It is what it is. I have decided it really does not matter. I just try to protect myself from environmentals as much as possible. I pulled the carpet out of my bedroom, cleaned the air ducts and did all kinds of stuff to my house and absolutely nothing changed. I still flare up for no obvious reason. Hang in there. It is daunting in the world you are in now. Fortunately there is lots of good info you will find on this board. S, Lubbock, TX NSIP w/PF 12/2006 et al > > > > > > 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 NSIP is a form of Pulmonary Fibrosis. It comes under the heading. If he is using the term " IPF " to mean " UIP " as is often done, then it is a different form. Your advantage at this point is you have NSIP and a probable cause from a myositis. Beth is on the road but she has very similar with NSIP and an " undifferentiated connective tissue disease " . I have UIP and may or 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 significant scarring. I would have suspected such just based on what you're able to do as the leakage appears to be causing more problems than the disease right now. As to the testing for Polymyositis and Dermatomyositis, I have been through lots of that and am seeing a rheumatologist here in addition to what was done at U of Chicago. Why he says it isn't likely to progress is that he is assuming the myositis to be the cause and if its progression is controlled then the NSIP would stabilize. UIP, NSIP and the others are all forms of pneumonitis. In a biopsy of NSIP the most visible thing generally is prominent interstitial inflammation. In UIP there is very little. Fibroblast proliferation is also rare in NSIP, while prominant in UIP. Honeycombing is rare in NSIP but exists in UIP. To me the greatest value of the biopsy is differentiating UIP and NSIP since they are so very different. So, while I wouldn't call any Interstitial Lung Disease good, you do have as favorable one as possible. This does put a high emphasis on controlling the myositis and your rheumatologist will rise to the forefront of your treatment. The other emphasis is monitoring and protecting other organs as it can, if not adequately controlled, affect organs other than the lungs such as the kidneys. Oh, and welcome home. I know why you really went to LA. To avoid as many 100 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 > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2008 Report Share Posted August 14, 2008 , I have worked in commercial printing companies all my career (21 yrs). Although I never worked directly with printing presses the environment could have been a factor but cannot be proven. I went to Los Angeles to see if a change in environment would help but it did not. I do the same that you are doing...try to be in the best environment, eat properly, take my meds and walk when I can. Those seem to be the only things I can control. It has been a long road so far and I still am not sure if anyone knows what I have or don't have. They all agree that I'm on the right meds. Thanks 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 , I have been on Remicade since Sept 2005 (I am due for my annual TB test soon). It worked somewhat for my AOSD but did not last till the next dose. Over time we increased the dose and decreased the time between doses. I am currently at the max dose and every 6 weeks instead of 8 weeks. Of course then I was off due to the scalp surgery and follow up infections......Hopefully I will be back on track. The first dose only lasted about 4 weeks before I got my arthritis symptoms coming back, waiting to see how this second dose will hold. I have a co worker (I used to be his boss in a previous life) who has sarcoidosis and ILD. He is now on Remicade and prednisone. I not sure what else. I think they just started the Remicade start up dosing recently with him. Cost.....expensive. Luckily I have good insurance.....I cringe when I see the EOB (Explanation of Benefits) and see what it would cost otherwise. I had not seen it being used for your autoimmune conditions before. But, it is an TNF Alpha blocker and that is involved in most of the inflammatory cascade events our bodies deal with. So do not see why not. At least as well as anything. AOSD is not an " approved " disease for Remicade, but we are so similar to RA that it is frequently used. What is the incidnece of your autoimmune disease? AOSD is about 1 in 100,000. Keep in touch. Tom > > 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? > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2008 Report Share Posted August 14, 2008 Just popping in hear briefly to further add to the confusion. Within NSIP there are three distince subtypes. Fibrotic (which is what I have), Cellular and mixed. Cellular NSIP usually shows very little scarring and fibrosis. Fibrotic obviously shows significant scarring and mixed shows some qualities of each. This is of course a pretty basic description but as I understand it, cellular NSIP typically does not develop into full blown fibrosis. This may be what 's doctor was speaking of. I'm sitting in bed right now watching "America's Best Dance Crew" on MTV (Now there's a sentence I never thought I'd write) with my 14 year old nephew. My son and I arrived this afternoon and I've been having way too much fun with the kids. I have a video that I will torture some of you with of my 6 year old nephew Jack singing "Build me up buttercup". He learned it at camp. Jack wants me to stay "how about maybe 22 days Aunt Mare?" It's nice to be loved. Logan is too cute to even write about and he smells delicious!! I want to squeeze him till he pops! I'll check in as I can. Love to all! Beth Age 48 Fibrotic NSIP 06/06 UCTD 07/08 Change everything. Love and Forgive 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> > >> >> Quote Link to comment Share on other sites More sharing options...
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