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]

Kathie,

This is a great post. A good one for newcomers to read. You and I are the people who bring the statistics up. We have lasted a long time. You must be a tough old gal like me. My doctors have named this disease various names, in spite of biopsy. I personally do not care what they call it, I call it bad names.

Most days, my faith and sense of humor keeps me going. This group has made a big difference to me. I love life, yet long for Heaven. I am blessed to have lived so long with this vicious disease.

Hang in there....with me. Maybe we will make the medical books!

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> >> > > > 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]

Kathie,

This is a great post. A good one for newcomers to read. You and I are the people who bring the statistics up. We have lasted a long time. You must be a tough old gal like me. My doctors have named this disease various names, in spite of biopsy. I personally do not care what they call it, I call it bad names.

Most days, my faith and sense of humor keeps me going. This group has made a big difference to me. I love life, yet long for Heaven. I am blessed to have lived so long with this vicious disease.

Hang in there....with me. Maybe we will make the medical books!

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> >> > > > 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]

Kathie, do you know where you found the prozac possibly causing pf? Geesh! Don has been on prozac for years and years. K central IlKathie wrote: 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> > >> >>

Like movies? Here's a limited-time offer: Blockbuster Total Access for one month at no cost.

[Guest guest]

Prozac

I know Dr. Raghu said something to someone here about getting off it. I think the best that is really known is that there is a long list of drugs which may cause pulmonary diseases, but so little really known. It's like every medication, weighing possible risks versus benefits.

Drug-induced pulmonary disease is not a single disorder, but rather, a common clinical problem in which a patient without previous pulmonary disease develops respiratory symptoms, chest x-ray changes, deterioration of pulmonary function, and/or histologic changes while receiving drug therapy. Over 150 drugs or categories of drugs have been reported to cause pulmonary disease; the mechanism is rarely known, but many drugs are thought to provoke a hypersensitivity response.

Depending on the drug, drug-induced syndromes can resemble interstitial fibrosis, bronchiolitis obliterans organizing pneumonia, asthma, noncardiogenic pulmonary edema, pleural effusions, pulmonary eosinophilia, pulmonary hemorrhage, or veno-occlusive disease.

Here is a table of some of the over 150 identified drugs.

http://www.merck.com/mmpe/sec05/ch055/ch055c.html#CIHJFAGG

Now, Prozac is not listed in that table as causing pulmonary fibrosis. But the list is wide from mineral oil to heroin. So, might there be some risk that Prozac does cause pulmonary problems? Yes. Can I find any strong medically published connection? No. Mainly things published on a few boards by those just like us. I do know what not being on Prozac causes among those who need it. Might it be worth trying something different? Perhaps. But, its a very difficult decision and one that really needs to be well managed. Understand over 54 milion people have taken Prozac at this point

> > > >> > > >> > > > 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]

Steve,

I could not take Imuran either. It messed up my bloodwork. I took Cellcept instead.

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> > >> > >> > > 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]

Kathie,

your case history is very similar to mine , so I feel a sort of a

kinship with you .I agree with you when you say'i do not feel

sick'.The only few times I have been miserable is when i had spine

fractures and was bed ridden, i suffered one of the fractures when

i was having abath and had to literally crawl out of the bath room

as i was alone, second time was when i had to undergo surgery for my

hiatal hernia.

be that as it may , I am stable now.hope you remain stable and be

happy despite the limitations.

all the best

love

Geeta

> >

> >

> > 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,

I too was diagnosed in1995and had symptoms earlier.

Geeta

-- In Breathe-Support , " Joyce " wrote:

>

>

> Kathie,

>

> This is a great post. A good one for newcomers to read. You and

I are

> the people who bring the statistics up. We have lasted a long

time.

> You must be a tough old gal like me. My doctors have named this

disease

> various names, in spite of biopsy. I personally do not care what

they

> call it, I call it bad names.

>

> Most days, my faith and sense of humor keeps me going. This group

has

> made a big difference to me. I love life, yet long for Heaven. I

am

> blessed to have lived so long with this vicious disease.

>

> Hang in there....with me. Maybe we will make the medical books!

>

> 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

>

> > >

> > >

> > > 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]

> > >

> > >

> > > 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

> > >

> >

> >

> >

>