Re: Kathie & & NSIP questions/a very long response

[Guest guest]

,

My first post was #21917, Sept. 14, '07. That is a fair summary of my story. I

am bad with

numbers but I think we are close in age (I'm 59) I was dx'd in 96. When my

first grand

was born in April 96 I was taking my first round of prednisone. Three weeks

later I was in

the CCU, the start of my journey. When I left the hospital 2 weeks later I was

on O2 and

still with no definitive dx. I was tested for HIV, CHF, Legionaire's disease,

ARDS. When I

went home my sats with exertion were still below 90 despite the 02. Two weeks

later I

went in for a followup and was sent home to pack a bag and then back to the

hospital.

Another 10 days with additional testing including the lung biopsy (vats). This

time when I

went home I was on a higher dosage of pred, 60 0r 80 I think. I was tapering

off but still

feeling pretty good and I had sent the O2 back. The dx @ this time was HP with

secondary

pf, and I was assured I would be " fixed " . In July of that year, I took a road

trip to CA, went

to a club with my daughter and danced (not long though) and was getting ready to

go

back to work.

Well, the reduced prednisone just didn't do it. I lived in an upstairs apt. and

had to stop at

least once to get up the stairs. Back came the O2, up went the pred. It now

appeared that

HP wasn't the correct dx and I was tested and tested. My biopsy had confirmed

nothing,

possibilities but nothing definitive. Through all of this up and down with the

pred I gained

close to 100 lbs. I decided I needed to start researching, myself because I

wasn't getting

any better. One of my Drs. said to me that the results of my pfts did not

support the

symptoms I spoke of (extreme sob). Thank goodness he finally tested me while I

was

exerting. My sats dropped like a rock. More and more testing, up and down with

pred, on

and of with 02. Pred went from 80 to 20 and then back up again. It finally came

down to

" you have PF but it isn't IPF even though we don't know what is causing it. " It

is acting like

an ai disease but we can't " name " it. During this time I had tried Imuran with

the pred but I

couldn't tolerate it. We talked about cytoxan but he thought I was too young to

take it at

the time because it can case bladder cancer.

Two years have now passed. I have a great therapist, I'm taking antidepressants

and the

whole issue of Prozac becomes an issue. I had found an article in CHEST that

suggested

Prozac might cause PF. I shared this with my doc and then he and I fought the

Battle of

Prozac. So at this time I decide I'm going to take a break. I find a local

internist that is

also a board certified pulmonologist. All I want is maintenance, no more tests.

She gets

me into rehab, gets me on proper meds to control the water retention. I lose 80

lbs, still

need 02 for exercise, full mask at 15 lpm. But i'm feeling better and can sit

w/out O2.

Things are good, well not that good! SOB increases, pfts drop, not dramatically

but

steadily. Pneumonia at least once a year, slower recovery, etc. Another couple

of years

have passed and it is now time to see the " big guy " , Dr. Raghu @ U of W. We

start off with

the idea of reflux/gerd. Had the nasty 24 hour test but that wasn't it. I went

back on

Imuran for 6 months or so, still couldn't tolerate it. I tried cytoxan, made me

even sicker

than the Imuran. Went on Acctimune for 6 to 8 months, developed mild PAH,

started

Tracleer. Also had TX evaluation during this time.

Back on Acctimune, off tracleer. Off Tracleer, off acctimune, off Imuran. I

now have

steroid dosage dependent diabetes, gout, poor kidney function, fms, mctd, PAH,

sleep

apnea, anemia, steroid myopathy, IBS, osteoarthritis and osteopenia. I'm back

on

Tracleer, and " deterioration " " palliative care " and " end stage " are phrases I'm

hearing,

2005.

I have " worn " the primary dx of ILD, HP, IPF, and now NSIP. Dr. Raghu says,

" The NSIP dx is

based on the biopsy not showing the UIP pattern. Clinically her illness has

behaved like

IPF. " ...her diseease progression may have been somewhat modified by multiple

medications... "

2006 hospilization for 2 weeks, pneumonia. On and off antibiotics until 11/2007

hospital

again, one week.

So if you are still with me, , There was a short period when I knew

something was

wrong before the 1st hospital visit. Then I started with a big change,

stabilized and now

deteriorating. I have been on prednisone since the beginning, never been off.

As high as

120 by IV and as low as 5 for short periods of time. I have been on and off O2

since the

beginning, at one time needing 15 for exercise, 10 for moving around and as low

as 0 at

sometimes. My NSIP is fibrotic. I don't know if the pred has slowed the

progression but it

certainly has relieved some of the symptoms. See previous paragraph re other

medications. Why progression now? Who knows? Why am I still here, I don't know

but I

have a theory.

I have never thought of myself as " sick " . I believed I had a terminal illness

and my life

would be considerably shorter than anticipated. I chose to focus on what I

could do, not

what I couldn't. I have been as active as I could be. I try to be as positive

as I can. If there

was something I wanted to do but it wasn't " recommended " , I weighed my options.

Like

you and the birds. With me it was volunteering with failure to thrive infants

and at risk

kids.

I gave every medication a try, if the result was a decrease in quality of life

I stopped

taking it, period. I put myself at risk at times but only when the rewards

outweighed the

danger, FOR ME. I didn't obsess over test #'s or oximetry readings. I

sometimes use

candles in my home, I have bird feeders and love to play with my flower

container

gardens. I avoid most chemicals and I gave away my house plants. I avoid large

groups of

people but will hug the people I love, cold and flu or not. I don't panic or

get too

concerned when sats drop into 80's. I try to keep them higher but sometimes

that doesn't

work. I'm not " pollyanna " or " little miss sunshine " . I get angry, depressed,

full of pity and

all the rest of it. But it still comes down to one thing, my life is about

living, not dying.

Hugs,

Kathie WA

I

>

>

> Thanks so much for posting these lovely photos Kathie....it's easy to

> see the bond between 'Air Family' members ins't it!

>

> Could I ask something of you for when you have the time &

> inclination....could you tell us YOUR story if that doesn't make you

> re-type something you've already done!!

>

> I don't recall hearing your experience from DX to now....I'm really

> trying to fathom how everybody's experiences are so different, one from

> the other. How long have you been on O2..did the need for it creep up on

> you or was it a big change quite quickly. Did you get it as soon as you

> needed it or was there a Lag time in anyone realising that you'd got to

> that stage?????

>

> From your Database file I see you're on Prednisone....how much did you

> take at the start & how much are you on now....have you taken it all the

> way along? Do you think it has slowed your progression? Have you got

> Fibrotic NSIP , Mixed NSIP or Cellular NSIP??????? Have you done

> anything else that you think has helped slow your progression? If you

> have started to progress again why do you think that has happened???

>

> Sorry for the 1000 ?'s but I'm feeling really hungry for feedback from

> NSIP folk. I know Z' story & a fair idea of Beth....WALLY if

> you see this I'd love to hear your story too! DIANA C's another I

> think.... have you shared your story ?????????

>

> ANY other NSIP folk lurking out there????????????????

>

> Cheers,

>

> In Oz

>

> IPF: Fibrotic NSIP/ UIP?????

>

> Reynauds'

>

> May 2007

>

[Guest guest]

When you say you couldn't tolerate immuran how do you mean. I think it keeps

me on that wonderful word " stable " .

Steve59 from WA

IPF 2006

>

>Reply-To: Breathe-Support

>To: Breathe-Support

>Subject: Re: Kathie & & NSIP questions/a very long

>response

>Date: Mon, 31 Mar 2008 21:41:32 -0000

>

>,

>

>My first post was #21917, Sept. 14, '07. That is a fair summary of my

>story. I am bad with

>numbers but I think we are close in age (I'm 59) I was dx'd in 96. When

>my first grand

>was born in April 96 I was taking my first round of prednisone. Three

>weeks later I was in

>the CCU, the start of my journey. When I left the hospital 2 weeks later I

>was on O2 and

>still with no definitive dx. I was tested for HIV, CHF, Legionaire's

>disease, ARDS. When I

>went home my sats with exertion were still below 90 despite the 02. Two

>weeks later I

>went in for a followup and was sent home to pack a bag and then back to the

>hospital.

>Another 10 days with additional testing including the lung biopsy (vats).

>This time when I

>went home I was on a higher dosage of pred, 60 0r 80 I think. I was

>tapering off but still

>feeling pretty good and I had sent the O2 back. The dx @ this time was HP

>with secondary

>pf, and I was assured I would be " fixed " . In July of that year, I took a

>road trip to CA, went

>to a club with my daughter and danced (not long though) and was getting

>ready to go

>back to work.

>

>Well, the reduced prednisone just didn't do it. I lived in an upstairs

>apt. and had to stop at

>least once to get up the stairs. Back came the O2, up went the pred. It

>now appeared that

>HP wasn't the correct dx and I was tested and tested. My biopsy had

>confirmed nothing,

>possibilities but nothing definitive. Through all of this up and down with

>the pred I gained

>close to 100 lbs. I decided I needed to start researching, myself because

>I wasn't getting

>any better. One of my Drs. said to me that the results of my pfts did not

>support the

>symptoms I spoke of (extreme sob). Thank goodness he finally tested me

>while I was

>exerting. My sats dropped like a rock. More and more testing, up and down

>with pred, on

>and of with 02. Pred went from 80 to 20 and then back up again. It finally

>came down to

> " you have PF but it isn't IPF even though we don't know what is causing

>it. " It is acting like

>an ai disease but we can't " name " it. During this time I had tried Imuran

>with the pred but I

>couldn't tolerate it. We talked about cytoxan but he thought I was too

>young to take it at

>the time because it can case bladder cancer.

>

>Two years have now passed. I have a great therapist, I'm taking

>antidepressants and the

>whole issue of Prozac becomes an issue. I had found an article in CHEST

>that suggested

>Prozac might cause PF. I shared this with my doc and then he and I fought

>the Battle of

>Prozac. So at this time I decide I'm going to take a break. I find a

>local internist that is

>also a board certified pulmonologist. All I want is maintenance, no more

>tests. She gets

>me into rehab, gets me on proper meds to control the water retention. I

>lose 80 lbs, still

>need 02 for exercise, full mask at 15 lpm. But i'm feeling better and can

>sit w/out O2.

>

>Things are good, well not that good! SOB increases, pfts drop, not

>dramatically but

>steadily. Pneumonia at least once a year, slower recovery, etc. Another

>couple of years

>have passed and it is now time to see the " big guy " , Dr. Raghu @ U of W.

>We start off with

>the idea of reflux/gerd. Had the nasty 24 hour test but that wasn't it. I

>went back on

>Imuran for 6 months or so, still couldn't tolerate it. I tried cytoxan,

>made me even sicker

>than the Imuran. Went on Acctimune for 6 to 8 months, developed mild PAH,

>started

>Tracleer. Also had TX evaluation during this time.

>

>Back on Acctimune, off tracleer. Off Tracleer, off acctimune, off Imuran.

>I now have

>steroid dosage dependent diabetes, gout, poor kidney function, fms, mctd,

>PAH, sleep

>apnea, anemia, steroid myopathy, IBS, osteoarthritis and osteopenia. I'm

>back on

>Tracleer, and " deterioration " " palliative care " and " end stage " are phrases

>I'm hearing,

>2005.

>

>I have " worn " the primary dx of ILD, HP, IPF, and now NSIP. Dr. Raghu

>says, " The NSIP dx is

>based on the biopsy not showing the UIP pattern. Clinically her illness

>has behaved like

>IPF. " ...her diseease progression may have been somewhat modified by

>multiple

>medications... "

>

>2006 hospilization for 2 weeks, pneumonia. On and off antibiotics until

>11/2007 hospital

>again, one week.

>

>So if you are still with me, , There was a short period when I knew

>something was

>wrong before the 1st hospital visit. Then I started with a big change,

>stabilized and now

>deteriorating. I have been on prednisone since the beginning, never been

>off. As high as

>120 by IV and as low as 5 for short periods of time. I have been on and

>off O2 since the

>beginning, at one time needing 15 for exercise, 10 for moving around and as

>low as 0 at

>sometimes. My NSIP is fibrotic. I don't know if the pred has slowed the

>progression but it

>certainly has relieved some of the symptoms. See previous paragraph re

>other

>medications. Why progression now? Who knows? Why am I still here, I don't

>know but I

>have a theory.

>

>I have never thought of myself as " sick " . I believed I had a terminal

>illness and my life

>would be considerably shorter than anticipated. I chose to focus on what I

>could do, not

>what I couldn't. I have been as active as I could be. I try to be as

>positive as I can. If there

>was something I wanted to do but it wasn't " recommended " , I weighed my

>options. Like

>you and the birds. With me it was volunteering with failure to thrive

>infants and at risk

>kids.

>

> I gave every medication a try, if the result was a decrease in quality of

>life I stopped

>taking it, period. I put myself at risk at times but only when the rewards

>outweighed the

>danger, FOR ME. I didn't obsess over test #'s or oximetry readings. I

>sometimes use

>candles in my home, I have bird feeders and love to play with my flower

>container

>gardens. I avoid most chemicals and I gave away my house plants. I avoid

>large groups of

>people but will hug the people I love, cold and flu or not. I don't panic

>or get too

>concerned when sats drop into 80's. I try to keep them higher but

>sometimes that doesn't

>work. I'm not " pollyanna " or " little miss sunshine " . I get angry,

>depressed, full of pity and

>all the rest of it. But it still comes down to one thing, my life is about

>living, not dying.

>

>Hugs,

>Kathie WA

>

>I

> >

> >

> > Thanks so much for posting these lovely photos Kathie....it's easy to

> > see the bond between 'Air Family' members ins't it!

> >

> > Could I ask something of you for when you have the time &

> > inclination....could you tell us YOUR story if that doesn't make you

> > re-type something you've already done!!

> >

> > I don't recall hearing your experience from DX to now....I'm really

> > trying to fathom how everybody's experiences are so different, one from

> > the other. How long have you been on O2..did the need for it creep up on

> > you or was it a big change quite quickly. Did you get it as soon as you

> > needed it or was there a Lag time in anyone realising that you'd got to

> > that stage?????

> >

> > From your Database file I see you're on Prednisone....how much did you

> > take at the start & how much are you on now....have you taken it all the

> > way along? Do you think it has slowed your progression? Have you got

> > Fibrotic NSIP , Mixed NSIP or Cellular NSIP??????? Have you done

> > anything else that you think has helped slow your progression? If you

> > have started to progress again why do you think that has happened???

> >

> > Sorry for the 1000 ?'s but I'm feeling really hungry for feedback from

> > NSIP folk. I know Z' story & a fair idea of Beth....WALLY if

> > you see this I'd love to hear your story too! DIANA C's another I

> > think.... have you shared your story ?????????

> >

> > ANY other NSIP folk lurking out there????????????????

> >

> > Cheers,

> >

> > In Oz

> >

> > IPF: Fibrotic NSIP/ UIP?????

> >

> > Reynauds'

> >

> > May 2007

> >

>

>

>

[Guest guest]

Joyce, thanks! Your response is very important to me. I feel very close to you

based on

our common experience and your postings. You speak my thoughts so often but

much

more eloquently than I could. I intend to keep on keeping on and am honored to

take this

trip with you and the rest of the boardies.

Kathie

> > >

> > >

> > > Thanks so much for posting these lovely photos Kathie....it's easy

> to

> > > see the bond between 'Air Family' members ins't it!

> > >

> > > Could I ask something of you for when you have the time &

> > > inclination....could you tell us YOUR story if that doesn't make you

> > > re-type something you've already done!!

> > >

> > > I don't recall hearing your experience from DX to now....I'm really

> > > trying to fathom how everybody's experiences are so different, one

> from

> > > the other. How long have you been on O2..did the need for it creep

> up on

> > > you or was it a big change quite quickly. Did you get it as soon as

> you

> > > needed it or was there a Lag time in anyone realising that you'd got

> to

> > > that stage?????

> > >

> > > From your Database file I see you're on Prednisone....how much did

> you

> > > take at the start & how much are you on now....have you taken it all

> the

> > > way along? Do you think it has slowed your progression? Have you got

> > > Fibrotic NSIP , Mixed NSIP or Cellular NSIP??????? Have you done

> > > anything else that you think has helped slow your progression? If

> you

> > > have started to progress again why do you think that has happened???

> > >

> > > Sorry for the 1000 ?'s but I'm feeling really hungry for feedback

> from

> > > NSIP folk. I know Z' story & a fair idea of Beth....WALLY

> if

> > > you see this I'd love to hear your story too! DIANA C's another I

> > > think.... have you shared your story ?????????

> > >

> > > ANY other NSIP folk lurking out there????????????????

> > >

> > > Cheers,

> > >

> > > In Oz

> > >

> > > IPF: Fibrotic NSIP/ UIP?????

> > >

> > > Reynauds'

> > >

> > > May 2007

> > >

> >

>

[Guest guest]

Steve, it just made me feel sick and miserable. It was bad enough that I decided

if I had to

choose between taking it and being stable (although I never even reached

stability

because I didn't reach a high enough dose) or not take, have a shorter life span

but much

better quality of life. I chose not to take it, twice. Two separate trials,

two separate docs.

I have never regretted that decision. I didn't want to live when I felt so

miserable I couldn't

see the grands or go to Church or play bridge or ...well you get it.

Kathie WA

nsip '96, etc.

> > >

> > >

> > > Thanks so much for posting these lovely photos Kathie....it's easy to

> > > see the bond between 'Air Family' members ins't it!

> > >

> > > Could I ask something of you for when you have the time &

> > > inclination....could you tell us YOUR story if that doesn't make you

> > > re-type something you've already done!!

> > >

> > > I don't recall hearing your experience from DX to now....I'm really

> > > trying to fathom how everybody's experiences are so different, one from

> > > the other. How long have you been on O2..did the need for it creep up on

> > > you or was it a big change quite quickly. Did you get it as soon as you

> > > needed it or was there a Lag time in anyone realising that you'd got to

> > > that stage?????

> > >

> > > From your Database file I see you're on Prednisone....how much did you

> > > take at the start & how much are you on now....have you taken it all the

> > > way along? Do you think it has slowed your progression? Have you got

> > > Fibrotic NSIP , Mixed NSIP or Cellular NSIP??????? Have you done

> > > anything else that you think has helped slow your progression? If you

> > > have started to progress again why do you think that has happened???

> > >

> > > Sorry for the 1000 ?'s but I'm feeling really hungry for feedback from

> > > NSIP folk. I know Z' story & a fair idea of Beth....WALLY if

> > > you see this I'd love to hear your story too! DIANA C's another I

> > > think.... have you shared your story ?????????

> > >

> > > ANY other NSIP folk lurking out there????????????????

> > >

> > > Cheers,

> > >

> > > In Oz

> > >

> > > IPF: Fibrotic NSIP/ UIP?????

> > >

> > > Reynauds'

> > >

> > > May 2007

> > >

> >

> >

> >

>

[Guest guest]

, I ran across it in a medical publication in 1997 or 1998. It was based

on the

anecdotal (is that the correct term, Bruce?) history of only one or two

patients. I don't

believe there is any trial data supporting this. In fact I had almost forgotten

about it until

another Boardie, Joy, mentioned that her lung doc had brought it up with her.

At the time I discussed it with my doc I had lots of questions, like if I quit

taking it and

nothing changed could I resume taking it. He said that my lung disease was life

threatening so best not to take any chances. My reply to him was that

depression is also

life threatening and until a stronger link between the prozac and lung was made

I'd stick

with the prozac.

Bruce has expressed his opinion on this issue, also.

Kathie WA

nsip 96,etc

> > > >

> > > >

> > > > Thanks so much for posting these lovely photos Kathie....it's easy

> > to

> > > > see the bond between 'Air Family' members ins't it!

> > > >

> > > > Could I ask something of you for when you have the time &

> > > > inclination....could you tell us YOUR story if that doesn't make you

> > > > re-type something you've already done!!

> > > >

> > > > I don't recall hearing your experience from DX to now....I'm really

> > > > trying to fathom how everybody's experiences are so different, one

> > from

> > > > the other. How long have you been on O2..did the need for it creep

> > up on

> > > > you or was it a big change quite quickly. Did you get it as soon as

> > you

> > > > needed it or was there a Lag time in anyone realising that you'd got

> > to

> > > > that stage?????

> > > >

> > > > From your Database file I see you're on Prednisone....how much did

> > you

> > > > take at the start & how much are you on now....have you taken it all

> > the

> > > > way along? Do you think it has slowed your progression? Have you got

> > > > Fibrotic NSIP , Mixed NSIP or Cellular NSIP??????? Have you done

> > > > anything else that you think has helped slow your progression? If

> > you

> > > > have started to progress again why do you think that has happened???

> > > >

> > > > Sorry for the 1000 ?'s but I'm feeling really hungry for feedback

> > from

> > > > NSIP folk. I know Z' story & a fair idea of Beth....WALLY

> > if

> > > > you see this I'd love to hear your story too! DIANA C's another I

> > > > think.... have you shared your story ?????????

> > > >

> > > > ANY other NSIP folk lurking out there????????????????

> > > >

> > > > Cheers,

> > > >

> > > > In Oz

> > > >

> > > > IPF: Fibrotic NSIP/ UIP?????

> > > >

> > > > Reynauds'

> > > >

> > > > May 2007

> > > >

> > >

> >

>

>

>

>

>

>

> ---------------------------------

> Like movies? Here's a limited-time offer: Blockbuster Total Access for one

month at no

cost.

>

[Guest guest]

Geeta, Thanks! Kathie

> > >

> > >

> > > Thanks so much for posting these lovely photos Kathie....it's

> easy to

> > > see the bond between 'Air Family' members ins't it!

> > >

> > > Could I ask something of you for when you have the time &

> > > inclination....could you tell us YOUR story if that doesn't make

> you

> > > re-type something you've already done!!

> > >

> > > I don't recall hearing your experience from DX to now....I'm

> really

> > > trying to fathom how everybody's experiences are so different,

> one from

> > > the other. How long have you been on O2..did the need for it

> creep up on

> > > you or was it a big change quite quickly. Did you get it as soon

> as you

> > > needed it or was there a Lag time in anyone realising that you'd

> got to

> > > that stage?????

> > >

> > > From your Database file I see you're on Prednisone....how much

> did you

> > > take at the start & how much are you on now....have you taken it

> all the

> > > way along? Do you think it has slowed your progression? Have you

> got

> > > Fibrotic NSIP , Mixed NSIP or Cellular NSIP??????? Have you done

> > > anything else that you think has helped slow your progression?

> If you

> > > have started to progress again why do you think that has

> happened???

> > >

> > > Sorry for the 1000 ?'s but I'm feeling really hungry for

> feedback from

> > > NSIP folk. I know Z' story & a fair idea of

> Beth....WALLY if

> > > you see this I'd love to hear your story too! DIANA C's another I

> > > think.... have you shared your story ?????????

> > >

> > > ANY other NSIP folk lurking out there????????????????

> > >

> > > Cheers,

> > >

> > > In Oz

> > >

> > > IPF: Fibrotic NSIP/ UIP?????

> > >

> > > Reynauds'

> > >

> > > May 2007

> > >

> >

>

[Guest guest]

-Steve,

sorry for jumping in, but i would like to say that when I was

given 'Immuran' i develped palpitations and nausea and passed red

urine, the doctors stopped Immuran and the symptoms vanished , they

simply said it doesnt agree with me

Geeta

- In Breathe-Support , " STEPHEN R WILSON "

wrote:

>

> When you say you couldn't tolerate immuran how do you mean. I

think it keeps

> me on that wonderful word " stable " .

> Steve59 from WA

> IPF 2006

>

>

> >

> >Reply-To: Breathe-Support

> >To: Breathe-Support

> >Subject: Re: Kathie & & NSIP questions/a

very long

> >response

> >Date: Mon, 31 Mar 2008 21:41:32 -0000

> >

> >,

> >

> >My first post was #21917, Sept. 14, '07. That is a fair summary

of my

> >story. I am bad with

> >numbers but I think we are close in age (I'm 59) I was dx'd in

96. When

> >my first grand

> >was born in April 96 I was taking my first round of prednisone.

Three

> >weeks later I was in

> >the CCU, the start of my journey. When I left the hospital 2

weeks later I

> >was on O2 and

> >still with no definitive dx. I was tested for HIV, CHF,

Legionaire's

> >disease, ARDS. When I

> >went home my sats with exertion were still below 90 despite the

02. Two

> >weeks later I

> >went in for a followup and was sent home to pack a bag and then

back to the

> >hospital.

> >Another 10 days with additional testing including the lung biopsy

(vats).

> >This time when I

> >went home I was on a higher dosage of pred, 60 0r 80 I think. I

was

> >tapering off but still

> >feeling pretty good and I had sent the O2 back. The dx @ this

time was HP

> >with secondary

> >pf, and I was assured I would be " fixed " . In July of that year,

I took a

> >road trip to CA, went

> >to a club with my daughter and danced (not long though) and was

getting

> >ready to go

> >back to work.

> >

> >Well, the reduced prednisone just didn't do it. I lived in an

upstairs

> >apt. and had to stop at

> >least once to get up the stairs. Back came the O2, up went the

pred. It

> >now appeared that

> >HP wasn't the correct dx and I was tested and tested. My biopsy

had

> >confirmed nothing,

> >possibilities but nothing definitive. Through all of this up and

down with

> >the pred I gained

> >close to 100 lbs. I decided I needed to start researching,

myself because

> >I wasn't getting

> >any better. One of my Drs. said to me that the results of my

pfts did not

> >support the

> >symptoms I spoke of (extreme sob). Thank goodness he finally

tested me

> >while I was

> >exerting. My sats dropped like a rock. More and more testing,

up and down

> >with pred, on

> >and of with 02. Pred went from 80 to 20 and then back up again.

It finally

> >came down to

> > " you have PF but it isn't IPF even though we don't know what is

causing

> >it. " It is acting like

> >an ai disease but we can't " name " it. During this time I had

tried Imuran

> >with the pred but I

> >couldn't tolerate it. We talked about cytoxan but he thought I

was too

> >young to take it at

> >the time because it can case bladder cancer.

> >

> >Two years have now passed. I have a great therapist, I'm taking

> >antidepressants and the

> >whole issue of Prozac becomes an issue. I had found an article

in CHEST

> >that suggested

> >Prozac might cause PF. I shared this with my doc and then he and

I fought

> >the Battle of

> >Prozac. So at this time I decide I'm going to take a break. I

find a

> >local internist that is

> >also a board certified pulmonologist. All I want is maintenance,

no more

> >tests. She gets

> >me into rehab, gets me on proper meds to control the water

retention. I

> >lose 80 lbs, still

> >need 02 for exercise, full mask at 15 lpm. But i'm feeling

better and can

> >sit w/out O2.

> >

> >Things are good, well not that good! SOB increases, pfts drop,

not

> >dramatically but

> >steadily. Pneumonia at least once a year, slower recovery, etc.

Another

> >couple of years

> >have passed and it is now time to see the " big guy " , Dr. Raghu @

U of W.

> >We start off with

> >the idea of reflux/gerd. Had the nasty 24 hour test but that

wasn't it. I

> >went back on

> >Imuran for 6 months or so, still couldn't tolerate it. I tried

cytoxan,

> >made me even sicker

> >than the Imuran. Went on Acctimune for 6 to 8 months, developed

mild PAH,

> >started

> >Tracleer. Also had TX evaluation during this time.

> >

> >Back on Acctimune, off tracleer. Off Tracleer, off acctimune,

off Imuran.

> >I now have

> >steroid dosage dependent diabetes, gout, poor kidney function,

fms, mctd,

> >PAH, sleep

> >apnea, anemia, steroid myopathy, IBS, osteoarthritis and

osteopenia. I'm

> >back on

> >Tracleer, and " deterioration " " palliative care " and " end stage "

are phrases

> >I'm hearing,

> >2005.

> >

> >I have " worn " the primary dx of ILD, HP, IPF, and now NSIP. Dr.

Raghu

> >says, " The NSIP dx is

> >based on the biopsy not showing the UIP pattern. Clinically her

illness

> >has behaved like

> >IPF. " ...her diseease progression may have been somewhat modified

by

> >multiple

> >medications... "

> >

> >2006 hospilization for 2 weeks, pneumonia. On and off

antibiotics until

> >11/2007 hospital

> >again, one week.

> >

> >So if you are still with me, , There was a short period when

I knew

> >something was

> >wrong before the 1st hospital visit. Then I started with a big

change,

> >stabilized and now

> >deteriorating. I have been on prednisone since the beginning,

never been

> >off. As high as

> >120 by IV and as low as 5 for short periods of time. I have been

on and

> >off O2 since the

> >beginning, at one time needing 15 for exercise, 10 for moving

around and as

> >low as 0 at

> >sometimes. My NSIP is fibrotic. I don't know if the pred has

slowed the

> >progression but it

> >certainly has relieved some of the symptoms. See previous

paragraph re

> >other

> >medications. Why progression now? Who knows? Why am I still here,

I don't

> >know but I

> >have a theory.

> >

> >I have never thought of myself as " sick " . I believed I had a

terminal

> >illness and my life

> >would be considerably shorter than anticipated. I chose to focus

on what I

> >could do, not

> >what I couldn't. I have been as active as I could be. I try to

be as

> >positive as I can. If there

> >was something I wanted to do but it wasn't " recommended " , I

weighed my

> >options. Like

> >you and the birds. With me it was volunteering with failure to

thrive

> >infants and at risk

> >kids.

> >

> > I gave every medication a try, if the result was a decrease in

quality of

> >life I stopped

> >taking it, period. I put myself at risk at times but only when

the rewards

> >outweighed the

> >danger, FOR ME. I didn't obsess over test #'s or oximetry

readings. I

> >sometimes use

> >candles in my home, I have bird feeders and love to play with my

flower

> >container

> >gardens. I avoid most chemicals and I gave away my house

plants. I avoid

> >large groups of

> >people but will hug the people I love, cold and flu or not. I

don't panic

> >or get too

> >concerned when sats drop into 80's. I try to keep them higher

but

> >sometimes that doesn't

> >work. I'm not " pollyanna " or " little miss sunshine " . I get

angry,

> >depressed, full of pity and

> >all the rest of it. But it still comes down to one thing, my

life is about

> >living, not dying.

> >

> >Hugs,

> >Kathie WA

> >

> >I

> > >

> > >

> > > Thanks so much for posting these lovely photos Kathie....it's

easy to

> > > see the bond between 'Air Family' members ins't it!

> > >

> > > Could I ask something of you for when you have the time &

> > > inclination....could you tell us YOUR story if that doesn't

make you

> > > re-type something you've already done!!

> > >

> > > I don't recall hearing your experience from DX to now....I'm

really

> > > trying to fathom how everybody's experiences are so different,

one from

> > > the other. How long have you been on O2..did the need for it

creep up on

> > > you or was it a big change quite quickly. Did you get it as

soon as you

> > > needed it or was there a Lag time in anyone realising that

you'd got to

> > > that stage?????

> > >

> > > From your Database file I see you're on Prednisone....how much

did you

> > > take at the start & how much are you on now....have you taken

it all the

> > > way along? Do you think it has slowed your progression? Have

you got

> > > Fibrotic NSIP , Mixed NSIP or Cellular NSIP??????? Have you

done

> > > anything else that you think has helped slow your

progression? If you

> > > have started to progress again why do you think that has

happened???

> > >

> > > Sorry for the 1000 ?'s but I'm feeling really hungry for

feedback from

> > > NSIP folk. I know Z' story & a fair idea of

Beth....WALLY if

> > > you see this I'd love to hear your story too! DIANA C's

another I

> > > think.... have you shared your story ?????????

> > >

> > > ANY other NSIP folk lurking out there????????????????

> > >

> > > Cheers,

> > >

> > > In Oz

> > >

> > > IPF: Fibrotic NSIP/ UIP?????

> > >

> > > Reynauds'

> > >

> > > May 2007

> > >

> >

> >

> >

>

[Guest guest]

Hi Gita, never feel sorry for jumping in. To help make decisions I need all the data, input, etc. that I can find. Doctors can be confusing and contradictory. When I was first pulled off Immuran I was told I was in immediate danger of liver failure and death. Sure panicked my wife. My liver tests have been fine since. Last week I had a visit with a liver specialist at UW Dr. Fix and he told me to go back on Immuran for the IPF benefits.

Also I have Hemochromatosis and have been having phlebotomies on and off for about three years. Twice I have become anemic and very sick. Now this new doctor told me I don't have Hemochromatosis and something else is causing my iron overload. I have a phleb scheduled for Thursday and I don't know whether to cancel or go. My pcp says go, yet my last labs lead me to think I would become anemic again. I also have excess ammonia in my brain which my pcp has said causes my confusion. Dr. Fix said the confusion is from something still undiagnosed. At least he said he would email his concerns and office notes to my pcp. I see her on the 17th. Altogether I take about 15 prescription drugs and 5 Health supplements all with side affects but supposed to keeping me ticking.

Anyway thanks for jumping in.

Steve59 from WA IPF 2006

Reply-To: Breathe-Support To: Breathe-Support Subject: Re: Kathie & & NSIP questions/a very long responseDate: Wed, 02 Apr 2008 05:06:41 -0000

-Steve,sorry for jumping in, but i would like to say that when I was given 'Immuran' i develped palpitations and nausea and passed red urine, the doctors stopped Immuran and the symptoms vanished , they simply said it doesnt agree with meGeeta- In Breathe-Support , "STEPHEN R WILSON" wrote:>> When you say you couldn't tolerate immuran how do you mean. I think it keeps > me on that wonderful word "stable".> Steve59 from WA> IPF 2006> > > >> >Reply-To: Breathe-Support > >To: Breathe-Support > >Subject: Re: Kathie & & NSIP questions/a very long > >response> >Date: Mon, 31 Mar 2008 21:41:32 -0000> >> >,> >> >My first post was #21917, Sept. 14, '07. That is a fair summary of my > >story. I am bad with> >numbers but I think we are close in age (I'm 59) I was dx'd in 96. When > >my first grand> >was born in April 96 I was taking my first round of prednisone. Three > >weeks later I was in> >the CCU, the start of my journey. When I left the hospital 2 weeks later I > >was on O2 and> >still with no definitive dx. I was tested for HIV, CHF, Legionaire's > >disease, ARDS. When I> >went home my sats with exertion were still below 90 despite the 02. Two > >weeks later I> >went in for a followup and was sent home to pack a bag and then back to the > >hospital.> >Another 10 days with additional testing including the lung biopsy (vats). > >This time when I> >went home I was on a higher dosage of pred, 60 0r 80 I think. I was > >tapering off but still> >feeling pretty good and I had sent the O2 back. The dx @ this time was HP > >with secondary> >pf, and I was assured I would be "fixed". In July of that year, I took a > >road trip to CA, went> >to a club with my daughter and danced (not long though) and was getting > >ready to go> >back to work.> >> >Well, the reduced prednisone just didn't do it. I lived in an upstairs > >apt. and had to stop at> >least once to get up the stairs. Back came the O2, up went the pred. It > >now appeared that> >HP wasn't the correct dx and I was tested and tested. My biopsy had > >confirmed nothing,> >possibilities but nothing definitive. Through all of this up and down with > >the pred I gained> >close to 100 lbs. I decided I needed to start researching, myself because > >I wasn't getting> >any better. One of my Drs. said to me that the results of my pfts did not > >support the> >symptoms I spoke of (extreme sob). Thank goodness he finally tested me > >while I was> >exerting. My sats dropped like a rock. More and more testing, up and down > >with pred, on> >and of with 02. Pred went from 80 to 20 and then back up again. It finally > >came down to> >"you have PF but it isn't IPF even though we don't know what is causing > >it." It is acting like> >an ai disease but we can't "name" it. During this time I had tried Imuran > >with the pred but I> >couldn't tolerate it. We talked about cytoxan but he thought I was too > >young to take it at> >the time because it can case bladder cancer.> >> >Two years have now passed. I have a great therapist, I'm taking > >antidepressants and the> >whole issue of Prozac becomes an issue. I had found an article in CHEST > >that suggested> >Prozac might cause PF. I shared this with my doc and then he and I fought > >the Battle of> >Prozac. So at this time I decide I'm going to take a break. I find a > >local internist that is> >also a board certified pulmonologist. All I want is maintenance, no more > >tests. She gets> >me into rehab, gets me on proper meds to control the water retention. I > >lose 80 lbs, still> >need 02 for exercise, full mask at 15 lpm. But i'm feeling better and can > >sit w/out O2.> >> >Things are good, well not that good! SOB increases, pfts drop, not > >dramatically but> >steadily. Pneumonia at least once a year, slower recovery, etc. Another > >couple of years> >have passed and it is now time to see the "big guy", Dr. Raghu @ U of W. > >We start off with> >the idea of reflux/gerd. Had the nasty 24 hour test but that wasn't it. I > >went back on> >Imuran for 6 months or so, still couldn't tolerate it. I tried cytoxan, > >made me even sicker> >than the Imuran. Went on Acctimune for 6 to 8 months, developed mild PAH, > >started> >Tracleer. Also had TX evaluation during this time.> >> >Back on Acctimune, off tracleer. Off Tracleer, off acctimune, off Imuran. > >I now have> >steroid dosage dependent diabetes, gout, poor kidney function, fms, mctd, > >PAH, sleep> >apnea, anemia, steroid myopathy, IBS, osteoarthritis and osteopenia. I'm > >back on> >Tracleer, and "deterioration" "palliative care" and "end stage" are phrases > >I'm hearing,> >2005.> >> >I have "worn" the primary dx of ILD, HP, IPF, and now NSIP. Dr. Raghu > >says, "The NSIP dx is> >based on the biopsy not showing the UIP pattern. Clinically her illness > >has behaved like> >IPF." ...her diseease progression may have been somewhat modified by > >multiple> >medications..."> >> >2006 hospilization for 2 weeks, pneumonia. On and off antibiotics until > >11/2007 hospital> >again, one week.> >> >So if you are still with me, , There was a short period when I knew > >something was> >wrong before the 1st hospital visit. Then I started with a big change, > >stabilized and now> >deteriorating. I have been on prednisone since the beginning, never been > >off. As high as> >120 by IV and as low as 5 for short periods of time. I have been on and > >off O2 since the> >beginning, at one time needing 15 for exercise, 10 for moving around and as > >low as 0 at> >sometimes. My NSIP is fibrotic. I don't know if the pred has slowed the > >progression but it> >certainly has relieved some of the symptoms. See previous paragraph re > >other> >medications. Why progression now? Who knows? Why am I still here, I don't > >know but I> >have a theory.> >> >I have never thought of myself as "sick". I believed I had a terminal > >illness and my life> >would be considerably shorter than anticipated. I chose to focus on what I > >could do, not> >what I couldn't. I have been as active as I could be. I try to be as > >positive as I can. If there> >was something I wanted to do but it wasn't "recommended", I weighed my > >options. Like> >you and the birds. With me it was volunteering with failure to thrive > >infants and at risk> >kids.> >> > I gave every medication a try, if the result was a decrease in quality of > >life I stopped> >taking it, period. I put myself at risk at times but only when the rewards > >outweighed the> >danger, FOR ME. I didn't obsess over test #'s or oximetry readings. I > >sometimes use> >candles in my home, I have bird feeders and love to play with my flower > >container> >gardens. I avoid most chemicals and I gave away my house plants. I avoid > >large groups of> >people but will hug the people I love, cold and flu or not. I don't panic > >or get too> >concerned when sats drop into 80's. I try to keep them higher but > >sometimes that doesn't> >work. I'm not "pollyanna" or "little miss sunshine". I get angry, > >depressed, full of pity and> >all the rest of it. But it still comes down to one thing, my life is about > >living, not dying.> >> >Hugs,> >Kathie WA> >> >I > > >> > >> > > Thanks so much for posting these lovely photos Kathie....it's easy to> > > see the bond between 'Air Family' members ins't it!> > >> > > Could I ask something of you for when you have the time & > > > inclination....could you tell us YOUR story if that doesn't make you> > > re-type something you've already done!!> > >> > > I don't recall hearing your experience from DX to now....I'm really> > > trying to fathom how everybody's experiences are so different, one from> > > the other. How long have you been on O2..did the need for it creep up on> > > you or was it a big change quite quickly. Did you get it as soon as you> > > needed it or was there a Lag time in anyone realising that you'd got to> > > that stage?????> > >> > > From your Database file I see you're on Prednisone....how much did you> > > take at the start & how much are you on now....have you taken it all the> > > way along? Do you think it has slowed your progression? Have you got> > > Fibrotic NSIP , Mixed NSIP or Cellular NSIP??????? Have you done> > > anything else that you think has helped slow your progression? If you> > > have started to progress again why do you think that has happened???> > >> > > Sorry for the 1000 ?'s but I'm feeling really hungry for feedback from> > > NSIP folk. I know Z' story & a fair idea of Beth....WALLY if> > > you see this I'd love to hear your story too! DIANA C's another I> > > think.... have you shared your story ?????????> > >> > > ANY other NSIP folk lurking out there????????????????> > >> > > Cheers,> > >> > > In Oz> > >> > > IPF: Fibrotic NSIP/ UIP?????> > >> > > Reynauds'> > >> > > May 2007> > >> >> >> >>

[Guest guest]

I forgot to ask where are you from? Very interesting name.

Steve59 from WA IPF 2006

Reply-To: Breathe-Support To: Breathe-Support Subject: Re: Kathie & & NSIP questions/a very long responseDate: Wed, 02 Apr 2008 05:06:41 -0000

-Steve,sorry for jumping in, but i would like to say that when I was given 'Immuran' i develped palpitations and nausea and passed red urine, the doctors stopped Immuran and the symptoms vanished , they simply said it doesnt agree with meGeeta- In Breathe-Support , "STEPHEN R WILSON" wrote:>> When you say you couldn't tolerate immuran how do you mean. I think it keeps > me on that wonderful word "stable".> Steve59 from WA> IPF 2006> > > >> >Reply-To: Breathe-Support > >To: Breathe-Support > >Subject: Re: Kathie & & NSIP questions/a very long > >response> >Date: Mon, 31 Mar 2008 21:41:32 -0000> >> >,> >> >My first post was #21917, Sept. 14, '07. That is a fair summary of my > >story. I am bad with> >numbers but I think we are close in age (I'm 59) I was dx'd in 96. When > >my first grand> >was born in April 96 I was taking my first round of prednisone. Three > >weeks later I was in> >the CCU, the start of my journey. When I left the hospital 2 weeks later I > >was on O2 and> >still with no definitive dx. I was tested for HIV, CHF, Legionaire's > >disease, ARDS. When I> >went home my sats with exertion were still below 90 despite the 02. Two > >weeks later I> >went in for a followup and was sent home to pack a bag and then back to the > >hospital.> >Another 10 days with additional testing including the lung biopsy (vats). > >This time when I> >went home I was on a higher dosage of pred, 60 0r 80 I think. I was > >tapering off but still> >feeling pretty good and I had sent the O2 back. The dx @ this time was HP > >with secondary> >pf, and I was assured I would be "fixed". In July of that year, I took a > >road trip to CA, went> >to a club with my daughter and danced (not long though) and was getting > >ready to go> >back to work.> >> >Well, the reduced prednisone just didn't do it. I lived in an upstairs > >apt. and had to stop at> >least once to get up the stairs. Back came the O2, up went the pred. It > >now appeared that> >HP wasn't the correct dx and I was tested and tested. My biopsy had > >confirmed nothing,> >possibilities but nothing definitive. Through all of this up and down with > >the pred I gained> >close to 100 lbs. I decided I needed to start researching, myself because > >I wasn't getting> >any better. One of my Drs. said to me that the results of my pfts did not > >support the> >symptoms I spoke of (extreme sob). Thank goodness he finally tested me > >while I was> >exerting. My sats dropped like a rock. More and more testing, up and down > >with pred, on> >and of with 02. Pred went from 80 to 20 and then back up again. It finally > >came down to> >"you have PF but it isn't IPF even though we don't know what is causing > >it." It is acting like> >an ai disease but we can't "name" it. During this time I had tried Imuran > >with the pred but I> >couldn't tolerate it. We talked about cytoxan but he thought I was too > >young to take it at> >the time because it can case bladder cancer.> >> >Two years have now passed. I have a great therapist, I'm taking > >antidepressants and the> >whole issue of Prozac becomes an issue. I had found an article in CHEST > >that suggested> >Prozac might cause PF. I shared this with my doc and then he and I fought > >the Battle of> >Prozac. So at this time I decide I'm going to take a break. I find a > >local internist that is> >also a board certified pulmonologist. All I want is maintenance, no more > >tests. She gets> >me into rehab, gets me on proper meds to control the water retention. I > >lose 80 lbs, still> >need 02 for exercise, full mask at 15 lpm. But i'm feeling better and can > >sit w/out O2.> >> >Things are good, well not that good! SOB increases, pfts drop, not > >dramatically but> >steadily. Pneumonia at least once a year, slower recovery, etc. Another > >couple of years> >have passed and it is now time to see the "big guy", Dr. Raghu @ U of W. > >We start off with> >the idea of reflux/gerd. Had the nasty 24 hour test but that wasn't it. I > >went back on> >Imuran for 6 months or so, still couldn't tolerate it. I tried cytoxan, > >made me even sicker> >than the Imuran. Went on Acctimune for 6 to 8 months, developed mild PAH, > >started> >Tracleer. Also had TX evaluation during this time.> >> >Back on Acctimune, off tracleer. Off Tracleer, off acctimune, off Imuran. > >I now have> >steroid dosage dependent diabetes, gout, poor kidney function, fms, mctd, > >PAH, sleep> >apnea, anemia, steroid myopathy, IBS, osteoarthritis and osteopenia. I'm > >back on> >Tracleer, and "deterioration" "palliative care" and "end stage" are phrases > >I'm hearing,> >2005.> >> >I have "worn" the primary dx of ILD, HP, IPF, and now NSIP. Dr. Raghu > >says, "The NSIP dx is> >based on the biopsy not showing the UIP pattern. Clinically her illness > >has behaved like> >IPF." ...her diseease progression may have been somewhat modified by > >multiple> >medications..."> >> >2006 hospilization for 2 weeks, pneumonia. On and off antibiotics until > >11/2007 hospital> >again, one week.> >> >So if you are still with me, , There was a short period when I knew > >something was> >wrong before the 1st hospital visit. Then I started with a big change, > >stabilized and now> >deteriorating. I have been on prednisone since the beginning, never been > >off. As high as> >120 by IV and as low as 5 for short periods of time. I have been on and > >off O2 since the> >beginning, at one time needing 15 for exercise, 10 for moving around and as > >low as 0 at> >sometimes. My NSIP is fibrotic. I don't know if the pred has slowed the > >progression but it> >certainly has relieved some of the symptoms. See previous paragraph re > >other> >medications. Why progression now? Who knows? Why am I still here, I don't > >know but I> >have a theory.> >> >I have never thought of myself as "sick". I believed I had a terminal > >illness and my life> >would be considerably shorter than anticipated. I chose to focus on what I > >could do, not> >what I couldn't. I have been as active as I could be. I try to be as > >positive as I can. If there> >was something I wanted to do but it wasn't "recommended", I weighed my > >options. Like> >you and the birds. With me it was volunteering with failure to thrive > >infants and at risk> >kids.> >> > I gave every medication a try, if the result was a decrease in quality of > >life I stopped> >taking it, period. I put myself at risk at times but only when the rewards > >outweighed the> >danger, FOR ME. I didn't obsess over test #'s or oximetry readings. I > >sometimes use> >candles in my home, I have bird feeders and love to play with my flower > >container> >gardens. I avoid most chemicals and I gave away my house plants. I avoid > >large groups of> >people but will hug the people I love, cold and flu or not. I don't panic > >or get too> >concerned when sats drop into 80's. I try to keep them higher but > >sometimes that doesn't> >work. I'm not "pollyanna" or "little miss sunshine". I get angry, > >depressed, full of pity and> >all the rest of it. But it still comes down to one thing, my life is about > >living, not dying.> >> >Hugs,> >Kathie WA> >> >I > > >> > >> > > Thanks so much for posting these lovely photos Kathie....it's easy to> > > see the bond between 'Air Family' members ins't it!> > >> > > Could I ask something of you for when you have the time & > > > inclination....could you tell us YOUR story if that doesn't make you> > > re-type something you've already done!!> > >> > > I don't recall hearing your experience from DX to now....I'm really> > > trying to fathom how everybody's experiences are so different, one from> > > the other. How long have you been on O2..did the need for it creep up on> > > you or was it a big change quite quickly. Did you get it as soon as you> > > needed it or was there a Lag time in anyone realising that you'd got to> > > that stage?????> > >> > > From your Database file I see you're on Prednisone....how much did you> > > take at the start & how much are you on now....have you taken it all the> > > way along? Do you think it has slowed your progression? Have you got> > > Fibrotic NSIP , Mixed NSIP or Cellular NSIP??????? Have you done> > > anything else that you think has helped slow your progression? If you> > > have started to progress again why do you think that has happened???> > >> > > Sorry for the 1000 ?'s but I'm feeling really hungry for feedback from> > > NSIP folk. I know Z' story & a fair idea of Beth....WALLY if> > > you see this I'd love to hear your story too! DIANA C's another I> > > think.... have you shared your story ?????????> > >> > > ANY other NSIP folk lurking out there????????????????> > >> > > Cheers,> > >> > > In Oz> > >> > > IPF: Fibrotic NSIP/ UIP?????> > >> > > Reynauds'> > >> > > May 2007> > >> >> >> >>