Re: Re: NSIP vs RB

[Guest guest]

Bruce,

I was in the middle of replying to Steve when I saw your reply. Just wanted to clarify that what Steve has is not bronchitis, but rather RB-ILD, which stands for Respiratory Bronchiolitis-Interstitial Lung Disease. It is an ILD though very rare and primarily seen in ex-smokers.

Steve, I'm not familiar with the Zithromax or Biaxin studies in Japan but Dr Padilla is in a position to be aware of the latest info out there. I'd be inclined to give it a shot especially since nothing much else seems to be having any affect.

I'm hoping though that someone else may no more and have more specific information. Keep us posted!

Thanks!

Beth

Age 48 Fibrotic NSIP 06/06

Change everything. Love and Forgive

Re: NSIP vs RB

Well, its complicated and there are frequently very conflictingindications and no clear answers.However, let me try to understand and translate what I think they may besaying, but I strongly urge you to make a list of questions and eithercall back or see the doctor again to get more information.They've certainly taken a major swing and change in the diagnosis andthe treatment. Is this the first time with Dr. Padilla and the changethe result of a change of doctors? Or has she been treating you?Ok, NSIP is often treated with prednisone and somewhat less frequentlywith Cellcept. It is an interstitial lung disease/form of pulmonaryfibrosis. It is sometimes controlled and managed for long periods oftime without progression and even occasional improvements. Thisdistinguishes it greatly from UIP/IPF.RB (Respiratory Bronchitis) is not a form of Pulmonary Fibrosis nor aninterstitial

lung disease. Likewise Zithromax and Biaxin are bothantibiotics used to treat bacteria and bacterial infections.So, what they are appearing to state is that whatever level of NSIP youhave isn't what is causing the majority of your current symptoms. But,some form of infection/bronchiti s is the problem . Now, taking this astep further, the long use of Prednisone could have even weakened yourimmune system to make this more likely. Often Prednisone just naturallyleads to a need for antibiotics. In fact, when you have certaininflammations you might get both Prednisone and an antibiotic evenprescribed together.As to the studies in Japan I have no idea what the significance of thosecomments are. I also take Japanese studies with a grain of salt havingseen them previously manipulated to use by some US pharmaceuticals. Whatthey are prescribing seems pretty straight forward without any

Japanesestudy. However, the real prove should come fairly quickly as theantibiotics should, if the answer, lead to some improvement before toolong.As they are making some very significant changes in diagnosis andtreatment I would definitely want to talk to Dr. Padilla further and geta greater understanding. On the whole, it sounds like good news, butbeing told what isn't enough, I'd want to hear the why of the change andwhat 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

decidedthey> were no longer going to treat my NSIP with Cellcept as the feel thisis> 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 intersitialdiseases?>

[Guest guest]

Bruce....what will we do while you are away on your trip??? The board has come to depend on your research and answers.

Mama-Sher, age 69. IPF 3-06, OR. Don't fret about tomorrow, God is already there!

Re: NSIP vs RB

Well, its complicated and there are frequently very conflictingindications and no clear answers.However, let me try to understand and translate what I think they may besaying, but I strongly urge you to make a list of questions and eithercall back or see the doctor again to get more information.They've certainly taken a major swing and change in the diagnosis andthe treatment. Is this the first time with Dr. Padilla and the changethe result of a change of doctors? Or has she been treating you?Ok, NSIP is often treated with prednisone and somewhat less frequentlywith Cellcept. It is an interstitial lung disease/form of pulmonaryfibrosis. It is sometimes controlled and managed for long periods oftime without progression and even occasional improvements. Thisdistinguishes it greatly from UIP/IPF.RB (Respiratory Bronchitis) is not a form of Pulmonary Fibrosis nor aninterstitial lung disease. Likewise Zithromax and Biaxin are bothantibiotics used to treat bacteria and bacterial infections.So, what they are appearing to state is that whatever level of NSIP youhave isn't what is causing the majority of your current symptoms. But,some form of infection/bronchitis is the problem . Now, taking this astep further, the long use of Prednisone could have even weakened yourimmune system to make this more likely. Often Prednisone just naturallyleads to a need for antibiotics. In fact, when you have certaininflammations you might get both Prednisone and an antibiotic evenprescribed together.As to the studies in Japan I have no idea what the significance of thosecomments are. I also take Japanese studies with a grain of salt havingseen them previously manipulated to use by some US pharmaceuticals. Whatthey are prescribing seems pretty straight forward without any Japanesestudy. However, the real prove should come fairly quickly as theantibiotics should, if the answer, lead to some improvement before toolong.As they are making some very significant changes in diagnosis andtreatment I would definitely want to talk to Dr. Padilla further and geta greater understanding. On the whole, it sounds like good news, butbeing told what isn't enough, I'd want to hear the why of the change andwhat 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 decidedthey> were no longer going to treat my NSIP with Cellcept as the feel thisis> 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 intersitialdiseases?>

[Guest guest]

Yes, yes, but you Bruce have become a real help. Many depend on you.

About Oregon....some live in WA...they may not like being called a "web-foot". hahaa.

In fact all but me do live in WA. Seattle is about a 3 31/2 hr drive. Not bad. Once there, I'm lost though!!

Mama-Sher, age 69. IPF 3-06, OR. Don't fret about tomorrow, God is already there!

Re: NSIP vs RB

SherNo, the great thing about this board is it depends on no individual butdepends on a community. I'm going to try to somehow read a couple oftimes 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?> >>

[Guest guest]

Sher, That was probably the first time! HA HA But I took it okay knowing all easteners think the US ends at the Mississipi river. HA HA And Californians are another story.

Steve59 from WA IPF 2006

Reply-To: Breathe-Support To: <Breathe-Support >Subject: Re: Re: NSIP vs RBDate: Sat, 5 Apr 2008 12:07:26 -0700

Yes, yes, but you Bruce have become a real help. Many depend on you.

About Oregon....some live in WA...they may not like being called a "web-foot". hahaa.

In fact all but me do live in WA. Seattle is about a 3 31/2 hr drive. Not bad. Once there, I'm lost though!!

Mama-Sher, age 69. IPF 3-06, OR. Don't fret about tomorrow, God is already there!

Re: NSIP vs RB

SherNo, the great thing about this board is it depends on no individual butdepends on a community. I'm going to try to somehow read a couple oftimes 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?> >>

[Guest guest]

Steve...well quickly notice, I spoke up for you. hahaa.

BTW, did you read Tina's post that she wants to come out here when we get together? Wow! She lives in Ohio. (I think it is).

Do you know of a nice place around the area where we could gather? I am not familiar w/ the area at all! Have been there a few times and loved it but someone else was driving.

Our casual comment seems to be turning into a certain thing.....

Mama-Sher, age 69. IPF 3-06, OR. Don't fret about tomorrow, God is already there!

Re: NSIP vs RB

SherNo, the great thing about this board is it depends on no individual butdepends on a community. I'm going to try to somehow read a couple oftimes 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?> >>

[Guest guest]

I can attest to that. The big fink (aka Steve) was on the treadmill next to me and would go and go and go and his sats never dropped. Hell his heart rate barely moved. Me, it was like my 8th or 9th session before then finally got it right, 12 liters with a venti mask, it's a great look especially when I started sweating.

Beth

Age 48 Fibrotic NSIP 06/06

Change everything. Love and Forgive

Re: NSIP vs RB

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.> >>