Guest guest Posted April 5, 2008 Report Share Posted April 5, 2008 Well, its complicated and there are frequently very conflicting indications and no clear answers. However, let me try to understand and translate what I think they may be saying, but I strongly urge you to make a list of questions and either call back or see the doctor again to get more information. They've certainly taken a major swing and change in the diagnosis and the treatment. Is this the first time with Dr. Padilla and the change the result of a change of doctors? Or has she been treating you? Ok, NSIP is often treated with prednisone and somewhat less frequently with Cellcept. It is an interstitial lung disease/form of pulmonary fibrosis. It is sometimes controlled and managed for long periods of time without progression and even occasional improvements. This distinguishes it greatly from UIP/IPF. RB (Respiratory Bronchitis) is not a form of Pulmonary Fibrosis nor an interstitial lung disease. Likewise Zithromax and Biaxin are both antibiotics used to treat bacteria and bacterial infections. So, what they are appearing to state is that whatever level of NSIP you have isn't what is causing the majority of your current symptoms. But, some form of infection/bronchitis is the problem . Now, taking this a step further, the long use of Prednisone could have even weakened your immune system to make this more likely. Often Prednisone just naturally leads to a need for antibiotics. In fact, when you have certain inflammations you might get both Prednisone and an antibiotic even prescribed together. As to the studies in Japan I have no idea what the significance of those comments are. I also take Japanese studies with a grain of salt having seen them previously manipulated to use by some US pharmaceuticals. What they are prescribing seems pretty straight forward without any Japanese study. However, the real prove should come fairly quickly as the antibiotics should, if the answer, lead to some improvement before too long. As they are making some very significant changes in diagnosis and treatment I would definitely want to talk to Dr. Padilla further and get a greater understanding. On the whole, it sounds like good news, but being told what isn't enough, I'd want to hear the why of the change and what she is saying about your NSIP vs. RB. > > Ok, the doctor called last night at 9:30pm. She was going over > everything (CAT-scans, PFT's and MY lung biopsy results from 2000) and > her (the doc at Mt. Sinai Dr. Padilla)and my regular pulmo decided they > were no longer going to treat my NSIP with Cellcept as the feel this is > not what is causing my issues as of late! > > Now they were going to ween me off the cellcept and my current pred > (which I have been on 15mg for a year) and introduce Zithromax or > Biaxin for the RB! There have been studies in Japan that chronic use > of either has show to help the RB. > > I am so confused right now? > > Anybody else go through these med changes for the intersitial diseases? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2008 Report Share Posted April 5, 2008 Steve...can't be of any help here. Hope your weekend is a good one. Mama-Sher, age 69. IPF 3-06, OR. Don't fret about tomorrow, God is already there! NSIP vs RB Ok, the doctor called last night at 9:30pm. She was going over everything (CAT-scans, PFT's and MY lung biopsy results from 2000) and her (the doc at Mt. Sinai Dr. Padilla)and my regular pulmo decided they were no longer going to treat my NSIP with Cellcept as the feel this is not what is causing my issues as of late!Now they were going to ween me off the cellcept and my current pred (which I have been on 15mg for a year) and introduce Zithromax or Biaxin for the RB! There have been studies in Japan that chronic use of either has show to help the RB.I am so confused right now?Anybody else go through these med changes for the intersitial diseases? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2008 Report Share Posted April 5, 2008 Beth and Steve As usual you are right on target and I didn't take RB to be RBILD which is an ILD and is primarily considered smoking related. However, that does bring the following question and that is why two antibiotics then? Now thats not a question we can answer. Maybe its an off label thing or maybe they think its being aggravated by some bacteria or form of pneumonia. I am sure the doctor's recommendations are sound, but would still encourage him to ask more so he fully understands. I think also it does show the benefit of a major hospital with expertise and the associated doctors. You take the rarity of ILD to start with and then add RBILD as such a small percentage of the cases, I would think it could easily be overlooked by a lot of radiologists, pulmonologists, and pathologists. And everything they have to work with can be confusing, the x-rays, CT's and even biopsies. Even in my pathology report from Mayo Clinic, which states definitively the diagnosis is UIP, there are several things noted as " more chronic inflammation that typically seen in ipf " and " in a few areas increased alveolar wall fibrosis analogous to fibrotic nonspecific interstitial pneumonia. " I have two pathology reports, can't wait to read the one that comes from Chicago. > > > > Ok, the doctor called last night at 9:30pm. She was going over > > everything (CAT-scans, PFT's and MY lung biopsy results from 2000) and > > her (the doc at Mt. Sinai Dr. Padilla)and my regular pulmo decided > they > > were no longer going to treat my NSIP with Cellcept as the feel this > is > > not what is causing my issues as of late! > > > > Now they were going to ween me off the cellcept and my current pred > > (which I have been on 15mg for a year) and introduce Zithromax or > > Biaxin for the RB! There have been studies in Japan that chronic use > > of either has show to help the RB. > > > > I am so confused right now? > > > > Anybody else go through these med changes for the intersitial > diseases? > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2008 Report Share Posted April 5, 2008 Sher No, the great thing about this board is it depends on no individual but depends on a community. I'm going to try to somehow read a couple of times if I can and will miss you all. > > > > Ok, the doctor called last night at 9:30pm. She was going over > > everything (CAT-scans, PFT's and MY lung biopsy results from 2000) and > > her (the doc at Mt. Sinai Dr. Padilla)and my regular pulmo decided > they > > were no longer going to treat my NSIP with Cellcept as the feel this > is > > not what is causing my issues as of late! > > > > Now they were going to ween me off the cellcept and my current pred > > (which I have been on 15mg for a year) and introduce Zithromax or > > Biaxin for the RB! There have been studies in Japan that chronic use > > of either has show to help the RB. > > > > I am so confused right now? > > > > Anybody else go through these med changes for the intersitial > diseases? > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2008 Report Share Posted April 5, 2008 Beth is right Bruce...It is not Bronchitis...I had an open biopsy back in 2000 when it showed Emphysema, NSIP and RB...Over the past 7 years, I have remained steady at a FEV1 of 37%. A little over a year ago, i had bronchitis and did not bounce back with the pred use, the bronchitis resolved itself though. My reg pulmo decided after months of up and down pred to send me to Dr. Padilla at Mt, Sinai. The past 6 months my meds remained the same except for the cellcept trying to work with the NSIP...After a-bout of Bronchitis and a big drop in FEV! to 27% (a 20% drop) in what I had, they have decided there was some underlying condition not reacting to the Cellcept and Pred...So, instead of trying to treat the NSIP, they are now going after the RB... I was wondering if anyone had had these same (or similar) situation... I do have COPD, but I am not on O2 as my sats remain at 95% or better, but become very SOB and no stamina! So this is where I am right now! I am having another CAT Scan next week, it's been 6 months and will go from there. I will see Dr. Padilla in 4 weeks and will talk to my reg pulmo on Monday (Dr. Menitove) Thanks for your input! You rock. That's why Blockbuster's offering you one month of Blockbuster Total Access, No Cost. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2008 Report Share Posted April 5, 2008 Steve, RB???? Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16>> Ok, the doctor called last night at 9:30pm. She was going over > everything (CAT-scans, PFT's and MY lung biopsy results from 2000) and > her (the doc at Mt. Sinai Dr. Padilla)and my regular pulmo decided they > were no longer going to treat my NSIP with Cellcept as the feel this is > not what is causing my issues as of late!> > Now they were going to ween me off the cellcept and my current pred > (which I have been on 15mg for a year) and introduce Zithromax or > Biaxin for the RB! There have been studies in Japan that chronic use > of either has show to help the RB.> > I am so confused right now?> > Anybody else go through these med changes for the intersitial diseases?> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2008 Report Share Posted April 5, 2008 Yes, I did acknowledge that I overlooked RBILD as opposed to RB. You do have a complicated situation and I would just seek additional information and go in with a bunch of questions. With the COPD and NSIP and RBILD and then add that your sats stay at 95%. Do they stay there even under exertion? > > Beth is right Bruce...It is not Bronchitis...I had an open biopsy back in 2000 when it showed Emphysema, NSIP and RB...Over the past 7 years, I have remained steady at a FEV1 of 37%. A little over a year ago, i had bronchitis and did not bounce back with the pred use, the bronchitis resolved itself though. > > My reg pulmo decided after months of up and down pred to send me to Dr. Padilla at Mt, Sinai. The past 6 months my meds remained the same except for the cellcept trying to work with the NSIP...After a-bout of Bronchitis and a big drop in FEV! to 27% (a 20% drop) in what I had, they have decided there was some underlying condition not reacting to the Cellcept and Pred...So, instead of trying to treat the NSIP, they are now going after the RB... > > I was wondering if anyone had had these same (or similar) situation... > > I do have COPD, but I am not on O2 as my sats remain at 95% or better, but become very SOB and no stamina! So this is where I am right now! I am having another CAT Scan next week, it's been 6 months and will go from there. I will see Dr. Padilla in 4 weeks and will talk to my reg pulmo on Monday (Dr. Menitove) > > Thanks for your input! > > > --------------------------------- > You rock. That's why Blockbuster's offering you one month of Blockbuster Total Access, No Cost. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2008 Report Share Posted April 5, 2008 They have done several 6min walks with me, even when I was at Resp Rehab on the treadmill I did not go below 93...Ask Beth she was there...He monitor beeped all the time until they got her 02 right, I never needed it...(if you didn't notice Beth and I did rehab together)... Anyway, the doctor in NYC at Mt SInai knows all this info and is really trying to put it all together... I will be putting questions together as you said! Thanks for the input! > > > > Beth is right Bruce...It is not Bronchitis...I had an open biopsy > back in 2000 when it showed Emphysema, NSIP and RB...Over the past 7 > years, I have remained steady at a FEV1 of 37%. A little over a year > ago, i had bronchitis and did not bounce back with the pred use, the > bronchitis resolved itself though. > > > > My reg pulmo decided after months of up and down pred to send me to > Dr. Padilla at Mt, Sinai. The past 6 months my meds remained the same > except for the cellcept trying to work with the NSIP...After a-bout of > Bronchitis and a big drop in FEV! to 27% (a 20% drop) in what I had, > they have decided there was some underlying condition not reacting to > the Cellcept and Pred...So, instead of trying to treat the NSIP, they > are now going after the RB... > > > > I was wondering if anyone had had these same (or similar) situation... > > > > I do have COPD, but I am not on O2 as my sats remain at 95% or better, > but become very SOB and no stamina! So this is where I am right now! I > am having another CAT Scan next week, it's been 6 months and will go > from there. I will see Dr. Padilla in 4 weeks and will talk to my reg > pulmo on Monday (Dr. Menitove) > > > > Thanks for your input! > > > > > > --------------------------------- > > You rock. That's why Blockbuster's offering you one month of > Blockbuster Total Access, No Cost. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2008 Report Share Posted April 5, 2008 That's great that you can do a treadmill and your sats stay up. I can't walk to the treadmill in the next room and mine stay up. I use 4 to 5 lpm on the treadmill. I think that information also probably plays into their belief that the NSIP isn't the major concern right now. I wish someone would pop up and say " oh yes, I'm just like you " to you, because your situation is certainly unique. The good thing is that with your doctors it probably isn't unique. > > > > > > Beth is right Bruce...It is not Bronchitis...I had an open > biopsy > > back in 2000 when it showed Emphysema, NSIP and RB...Over the past 7 > > years, I have remained steady at a FEV1 of 37%. A little over a year > > ago, i had bronchitis and did not bounce back with the pred use, the > > bronchitis resolved itself though. > > > > > > My reg pulmo decided after months of up and down pred to send me > to > > Dr. Padilla at Mt, Sinai. The past 6 months my meds remained the > same > > except for the cellcept trying to work with the NSIP...After a-bout > of > > Bronchitis and a big drop in FEV! to 27% (a 20% drop) in what I had, > > they have decided there was some underlying condition not reacting > to > > the Cellcept and Pred...So, instead of trying to treat the NSIP, > they > > are now going after the RB... > > > > > > I was wondering if anyone had had these same (or similar) > situation... > > > > > > I do have COPD, but I am not on O2 as my sats remain at 95% or > better, > > but become very SOB and no stamina! So this is where I am right > now! I > > am having another CAT Scan next week, it's been 6 months and will go > > from there. I will see Dr. Padilla in 4 weeks and will talk to my > reg > > pulmo on Monday (Dr. Menitove) > > > > > > Thanks for your input! > > > > > > > > > --------------------------------- > > > You rock. That's why Blockbuster's offering you one month of > > Blockbuster Total Access, No Cost. > > > > > > Quote Link to comment Share on other sites More sharing options...
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