Guest guest Posted July 2, 2009 Report Share Posted July 2, 2009 Stefani, As I understand it, Cellular NSIP is mainly inflammatory in nature with minimal fibrosis or scarring as opposed to Fibrotic NSIP which is mainly fibrotic or scarring and minimal inflammation. There is a third sub-type that I've heard of that is Mixed NSIP which contains both inflammation and scarring. Of the three, cellular NSIP is said to have the best prognosis, responds best to treatment with predinisone and people live the longest. Fibrotic NSIP is not generally thought to respond as well to treatment with steroids. Oddly however, both Zion and myself have fibrotic NSIP (correct me if I'm wrong ) and we have both responded well to prednisone and have stayed relatively stable for a long time. I think there's still alot for them to learn about NSIP and pulmonary fibrosis overall. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Thursday, July 2, 2009 6:02:03 PMSubject: NSIP Does anyone know the difference between cellular and fibrotic NSIP? While I was at National Jewish I was told I had NSIP. When I received the requested written copies of test results and diagnosis, I discovered that as almost a second thought or parenthetical the cellular ad opposed to fibrotic was attached to the NSIP diagnosis. I figure it is a good thing, but haven't been able to find any clarity on the net. I go see my local pulmo-dude next week and am expecting a prescription for oxygen. Tests show I drop like a rock with movement. I am fine (95-96%) seated or with little movement. If I walk down the hall in my home, I drop to 86, but recover in less than 30 seconds. I have a concentrator that I use for exercise or now while I clean house or put away groceries. Not that I notice, but they told me I need to make these adjustments in my lifestyle (and I am listening to them because I really don't know anything about this stuff).I just keep reading and 'listening' to other members. It helps.Stefani (age 60, Utah)NSIP (cellular) 6/2009, Diabetes II 2/2006, Sleep Apnea 4/2009 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2009 Report Share Posted July 2, 2009 Beth Well, UIP wasn't pulled out separate at one time. More and more varieties are discovered. I wouldn't be surprised five years from now to see a list of 7 or 8 different forms of NSIP defined. Then they might combine them all back. For instance, think of this. Maybe there is just one NSIP but sometimes it manifests itself fibrotically first and sometimes with inflammation first. Then perhaps the prednisone doesn't do anything for the fibrosis already there but it treats the inflammation and heads off inflammation not manifested yet. Maybe without the inflammation the fibrosis doesn't progress as rapidly. This is all hypothesis, but not at all unreasonable to think a single disease can appear differently. Not at all that different than our " undifferentiated connective tissue disease " which is we think you have something there but we have no idea what so we'll wait until it appears more. Don't we just love the words Idiopathic, Atypical, Undifferentiated. Can we just translate to " we don't know. " > > Stefani, > As I understand it, Cellular NSIP is mainly inflammatory in nature with minimal fibrosis or scarring as opposed to Fibrotic NSIP which is mainly fibrotic or scarring and minimal inflammation. There is a third sub-type that I've heard of that is Mixed NSIP which contains both inflammation and scarring. > > Of the three, cellular NSIP is said to have the best prognosis, responds best to treatment with predinisone and people live the longest. Fibrotic NSIP is not generally thought to respond as well to treatment with steroids. > > Oddly however, both Zion and myself have fibrotic NSIP (correct me if I'm wrong ) and we have both responded well to prednisone and have stayed relatively stable for a long time. > > I think there's still alot for them to learn about NSIP and pulmonary fibrosis overall. > > Beth > Moderator > Fibrotic NSIP 06/06 Dermatomyositis 11/08 > > > > > ________________________________ > From: sfshaner sfshaner@... > To: Breathe-Support > Sent: Thursday, July 2, 2009 6:02:03 PM > Subject: NSIP > > > > > > Does anyone know the difference between cellular and fibrotic NSIP? While I was at National Jewish I was told I had NSIP. When I received the requested written copies of test results and diagnosis, I discovered that as almost a second thought or parenthetical the cellular ad opposed to fibrotic was attached to the NSIP diagnosis. I figure it is a good thing, but haven't been able to find any clarity on the net. > > I go see my local pulmo-dude next week and am expecting a prescription for oxygen. Tests show I drop like a rock with movement. I am fine (95-96%) seated or with little movement. If I walk down the hall in my home, I drop to 86, but recover in less than 30 seconds. I have a concentrator that I use for exercise or now while I clean house or put away groceries. Not that I notice, but they told me I need to make these adjustments in my lifestyle (and I am listening to them because I really don't know anything about this stuff). > > I just keep reading and 'listening' to other members. It helps. > > Stefani (age 60, Utah) > NSIP (cellular) 6/2009, Diabetes II 2/2006, Sleep Apnea 4/2009 > Quote Link to comment Share on other sites More sharing options...
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