Re: The prednisone debate and the lung biopsy debate

[Guest guest]

Beth,I'm not sure how I feel about the prednisone, but I did ask my PCP to put me on it again. So, I am on a maintanance dose of 10 mg a day, but can go up to 20 if needed. It plays havoc with my insulin levels, and so I am on two types, fast acting before meals, and long acting before bedtime. But like I told him I'd much rather breathe than the alternative. Kathy IPF 10/09 Type 2 diabetes forever agoSubject: The prednisone debate and the lung biopsy debateTo: Breathe-Support Date: Wednesday, December 2, 2009, 2:41 PM

These are both issues that each individual has to sort out for themselves. WE ARE ALL DIFFERENT. I was on high doses of iv steroids in the hospital and a high dose of oral prednisone at home for months. It saved my life and then stablized my disease. Would I recommend it for everyone? Absolutely not but it will help some people, even a small percentage of those with IPF respond favorably to prednisone. That's why some (including some doctors) feel it's worth a try. When I was on it I was fortunate in that I had a physician who was aggressive in helping me manage the side effects. I've been off pred now for nearly 3 years but I would do it all over again in exactly the same way if the need arose.

Some react miserably to prednisone and it does nothing for them. The frustration is intense and understandable. It's not for everyone and our physicians should explain the risks vs rewards before starting us down that road when at all possible.

Lung biopsy....yet another can of worms. I had one and would do it again because I gained useful information. Not everyone does. Unfortunately it's difficult/impossibl e to tell who will gain information and who won't. This is a very tough call and I would never tell someone do it or don't do it. What I would say is get yourself to an ILD (interstitial lung disease) expert and bring the issue up with that person. Would they recommend a biopsy and why? Gather as much information as possible in order to help you make your decision.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

From: Peggy <pac1773@centurylink .net>To: Breathe Support Support <Breathe-Support@ yahoogroups. com>Sent: Wed, December 2, 2009 3:37:19 PMSubject:

Hi Patti, You are so right attitude is the way to fight this disease. Nothing will help the IPF.

There isn't any data to say prednisone helps.. my experience was prednisone does nothing for IPF. It is the BEST and the WORST drug. I have been diagnosed 5 1/2 years and am sure I had this 4 or 5 years before. I guess you have to live it to know these things that will help and what does not.. WE are all different so thing react differently but IPF is IPF.. I feel so bad for our sweet members that have a lung biopsy only to be told you have IPF or it is inconclusive. Infection is such a high risk. We don't hear that much about it because they don't make it through it.

I don't want to scare you or the other newbies but I am just so angry with this disease.

I guess I have said enough for now. I am sure I'll hear about this one.. LOL

Love & Prayers

Peggy, IPF 2004

[Guest guest]

It will always amaze me how different each ILD patient is.

I had an open lung biopsy where a large " wedge " of my lung was removed as well

as several lymph nodes. The information we learned answered questions that I

didn't have answers to for MANY years. It was the single most painful experience

I've ever had. There are others I'm grateful to know had a better outcome with

their biopsy.

I waited a few years after diagnosis to agree to try prednisone and cellcept.

Although I was fortunate enough to not end up diabetic, I had excessive pain in

my joints, massive weight gain, several days at a time w/out sleep, and on and

on. To top it off the medication actually made my PF worse. I was dangerously

depressed.I got help(and happy pills!)However, there are many patients these

medications help tremendously.

I've come to terms with my disease and live everday as best I can.

Each of us finds our own, new normal in time.

I don't know that a list of stages would help as there are so many different

ways patients can progress. Where one is with suplemental oxygen doesn't

necessarily mark ones level of progression. There are too many factors that play

a roll in the progression of each individual patient (PFT's, CTs, scarring, what

other medical issues each patient may have, if the ILD is Primary or Secondary

to the patients other diagnois.) It's been made clear to me by each

pulmonolgist I've seen that I am in the " advanced stages " of IPF. It's usually

pointed out to me the amount of scarring and " honeycombimg " seen in HRCT's in

combonation with all my other testing. However, I'm experiencing only a slow

prgression right now as others may be having faster progression. With more than

200 forms of ILD it could be very difficult to label an individuals stage of the

disease.

Sounds like we're all a complicated group of folks!

Better Breathin' to Ya!

34, FL

IPF dx 1/06

>

> These are both issues that each individual has to sort out for themselves. 

WE ARE ALL DIFFERENT. I was on high doses of iv steroids in the hospital

and a high dose of oral prednisone at home for months. It saved my life

and then stablized my disease. Would I recommend it for everyone? Absolutely

not but it will help some people, even a small percentage of those with IPF

respond favorably to prednisone. That's why some (including some doctors) feel

it's worth a try. When I was on it I was fortunate in that I had

a physician who was aggressive in helping me manage the side effects. I've

been off pred now for nearly 3 years but I would do it all over again in exactly

the same way if the need arose.

> Some react miserably to prednisone and it does nothing for them.

The frustration is intense and understandable. It's not for everyone and our

physicians should explain the risks vs rewards before starting us down that road

when at all possible.

>

> Lung biopsy....yet another can of worms. I had one and would do it again

because I gained useful information. Not everyone does. Unfortunately it's

difficult/impossible to tell who will gain information and who won't.  This is

a very tough call and I would never tell someone do it or don't do it. What I

would say is get yourself to an ILD (interstitial lung disease) expert and bring

the issue up with that person. Would they recommend a biopsy and why? Gather as

much information as possible in order to help you make your decision. 

>  

> Beth

> Moderator

> Fibrotic NSIP 06/06 Dermatomyositis 11/08

>  

>  

>

>

>

>

> ________________________________

>

> To: Breathe Support Support <Breathe-Support >

> Sent: Wed, December 2, 2009 3:37:19 PM

> Subject:

>

>  

> Hi Patti, You are so right attitude is the way to fight this disease. Nothing

will help the IPF.

> There isn't any data to say prednisone helps.. my experience was prednisone

does nothing for IPF. It is the BEST and the WORST drug. I have been diagnosed 5

1/2 years and am sure I had this 4 or 5 years before. I guess you have to live

it to know these things that will help and what does not.. WE are all different

so thing react differently but IPF is IPF.. I feel so bad for our sweet members

that have a lung biopsy only to be told you have IPF or it is inconclusive.

Infection is such a high risk. We don't hear that much about it because they

don't make it through it. 

> I don't want to scare you or the other newbies but I am just so angry with

this disease.

> I guess I have said enough for now. I am sure I'll hear about this one.. LOL

 

>

>

>

>

>

> Love & Prayers

> Peggy, IPF 2004

>

[Guest guest]

,Thats what they kept repeating in the report from NJH, what a complex(and pleasent:) patient I was. Nice to know I'm a ....Pleasant Puzzle Ta Da! I have to add that to all my other titles...Most Powerful Woman in Pheonix, QuickB*tch Queen, Meanest Mom in Phoenix (although I have passed that on to my girls so I guess Im retired on that one LOL) Dyane Billings PP, MPWinP, QBB, MMinp (Ret) Wow looks impressive doesn't it HA HA HA HADyane,

54, Phoenix, IIP 02 now NSIP 09, Breast Cancer, Psoriasis,

Lipodermatosclerosis, Diabetes, and now a RA like autoimmune component,

yadda yadda yadda."Life is not a journey to the grave with

intentions of arriving is a pretty, well-preserved body, but rather to

skid in broadside, thoroughly used up, totally worn out, chocolate in

one hand, Margaritas in the other, loudly proclaiming "Holy **** What a

ride!"."> >> > These are both issues that each individual has to sort out for themselves. WE ARE ALL DIFFERENT. I was on high doses of iv steroids in the hospital and a high dose of oral prednisone at home for months. It saved my life and then stablized my disease. Would I recommend it for everyone? Absolutely not but it will help some people, even a small percentage of those with IPF respond favorably to prednisone. That's why some (including some doctors) feel it's worth a try. When I was on it I was fortunate in that I had a physician who was aggressive in helping me manage the side effects. I've been off pred now for nearly 3 years but I would do it all over again in exactly the same way if the need arose. > > Some react miserably to prednisone and it does nothing for them. The frustration is intense and understandable. It's not for everyone and our physicians should explain the risks vs rewards before starting us down that road when at all possible.> > > > Lung biopsy....yet another can of worms. I had one and would do it again because I gained useful information. Not everyone does. Unfortunately it's difficult/impossible to tell who will gain information and who won't. This is a very tough call and I would never tell someone do it or don't do it. What I would say is get yourself to an ILD (interstitial lung disease) expert and bring the issue up with that person. Would they recommend a biopsy and why? Gather as much information as possible in order to help you make your decision. > >  > > Beth> > Moderator> > Fibrotic NSIP 06/06 Dermatomyositis 11/08> >  > >  > > > > > > > > > > ________________________________> > From: Peggy pac1773@> > To: Breathe Support Support Breathe-Support > > Sent: Wed, December 2, 2009 3:37:19 PM> > Subject: > > > >  > > Hi Patti, You are so right attitude is the way to fight this disease. Nothing will help the IPF. > > There isn't any data to say prednisone helps.. my experience was prednisone does nothing for IPF. It is the BEST and the WORST drug. I have been diagnosed 5 1/2 years and am sure I had this 4 or 5 years before. I guess you have to live it to know these things that will help and what does not.. WE are all different so thing react differently but IPF is IPF.. I feel so bad for our sweet members that have a lung biopsy only to be told you have IPF or it is inconclusive. Infection is such a high risk. We don't hear that much about it because they don't make it through it. > > I don't want to scare you or the other newbies but I am just so angry with this disease.> > I guess I have said enough for now. I am sure I'll hear about this one.. LOL  > > > > > > > > > > > > Love & Prayers> > Peggy, IPF 2004> >>

[Guest guest]

I' the QUIXK bitch Queen and don't forget it

<FONT face="comic sans ms" color=#40007f size=3> Soulliere & nbsp; <IMG src="http://us.i1.yimg.com/us.yimg.com/i/mesg/tsmileys2/50.gif"></FONT>

To: Breathe-Support Sent: Fri, December 4, 2009 12:26:04 AMSubject: Re: The prednisone debate and the lung biopsy debate

,Thats what they kept repeating in the report from NJH, what a complex(and pleasent:) patient I was. Nice to know I'm a ....Pleasant Puzzle Ta Da! I have to add that to all my other titles...Most Powerful Woman in Pheonix, QuickB*tch Queen, Meanest Mom in Phoenix (although I have passed that on to my girls so I guess Im retired on that one LOL) Dyane Billings PP, MPWinP, QBB, MMinp (Ret) Wow looks impressive doesn't it HA HA HA HADyane, 54, Phoenix, IIP 02 now NSIP 09, Breast Cancer, Psoriasis, Lipodermatosclerosi s, Diabetes, and now a RA like autoimmune component, yadda yadda yadda."Life is not a journey to the grave with intentions of arriving is a pretty, well-preserved

body, but rather to skid in broadside, thoroughly used up, totally worn out, chocolate in one hand, Margaritas in the other, loudly proclaiming "Holy **** What a ride!"."

> >> > These are both issues that each individual has to sort out for themselves. WE ARE ALL DIFFERENT. I was on high doses of iv steroids in the hospital and a high dose of oral prednisone at home for months. It saved my life and then stablized my disease. Would I recommend it for everyone? Absolutely not but it will help some people, even a small percentage of those with IPF respond favorably to prednisone. That's why some (including some doctors) feel it's worth a try. When I was on it I was fortunate in that I had a physician who was aggressive in

helping me manage the side effects. I've been off pred now for nearly 3 years but I would do it all over again in exactly the same way if the need arose. > > Some react miserably to prednisone and it does nothing for them. The frustration is intense and understandable. It's not for everyone and our physicians should explain the risks vs rewards before starting us down that road when at all possible.> > > > Lung biopsy....yet another can of worms. I had one and would do it again because I gained useful information. Not everyone does. Unfortunately it's difficult/impossibl e to tell who will gain information and who won't. This is a very tough call and I would never tell someone do it or don't do it. What I would say is get yourself to an ILD (interstitial lung disease) expert and bring the issue up with that person. Would they recommend a biopsy and why? Gather as much

information as possible in order to help you make your decision. > >  > > Beth> > Moderator> > Fibrotic NSIP 06/06 Dermatomyositis 11/08> >  > >  > > > > > > > > > > ____________ _________ _________ __> > From: Peggy pac1773@> > To: Breathe Support Support Breathe-Support@ yahoogroups. com> > Sent: Wed, December 2, 2009 3:37:19 PM> > Subject: > > > >  > > Hi Patti, You are so right attitude is the way to fight this disease. Nothing will help the IPF. > > There isn't any data to say prednisone helps.. my experience was prednisone does nothing for IPF. It is the BEST and the WORST drug. I have been diagnosed 5 1/2 years and am sure I had this 4 or 5 years before. I guess you have to live it to

know these things that will help and what does not.. WE are all different so thing react differently but IPF is IPF.. I feel so bad for our sweet members that have a lung biopsy only to be told you have IPF or it is inconclusive. Infection is such a high risk. We don't hear that much about it because they don't make it through it. > > I don't want to scare you or the other newbies but I am just so angry with this disease.> > I guess I have said enough for now. I am sure I'll hear about this one.. LOL  > > > > > > > > > > > > Love & Prayers> > Peggy, IPF 2004> >>

[Guest guest]

Oh ,

You do know how irresistible gay guys are to us older women don't you?

My favorite old cassette tape was my Best of Queen. Did you know Freddy

could sing through four octives? When the cassette died I had to go

online and download it. One of my best road trip tapes.

Dyane, 54, Phoenix, IIP 02 now NSIP 09, Breast Cancer, Psoriasis,

Lipodermatosclerosi s, Diabetes, and now a RA like autoimmune component,

yadda yadda yadda.

>

>

> " Life is not a journey to the grave with intentions of arriving is a

pretty, well-preserved body, but rather to skid in broadside, thoroughly

used up, totally worn out, chocolate in one hand, Margaritas in the

other, loudly proclaiming " Holy **** What a ride! " . "

>

> > >

> > > These are both issues that each individual has toÂÂ

sort out for themselves. WE ARE ALL DIFFERENT. I was on

high doses of iv steroids in the hospital and a

high dose of oral prednisone at home for months. It saved my life

and then stablized my disease. Would I recommend it for everyone?

Absolutely not but it will help some people, even a small

percentage of those with IPF respond favorably to prednisone. That's

why some (including some doctors) feel it's worth a try. When

I was on it I was fortunate in that I had aÂÂ

physician who was aggressive in helping me manage the side

effects. I've been off pred now for nearly 3 years but I would do it all

over again in exactly the same way if the need arose.

> > > Some react miserably to prednisone and it does nothing for them.

The frustration is intense and understandable. It's not for

everyone and our physicians should explain the risks vs rewards

before starting us down that road when at all possible.

> > >

> > > Lung biopsy....yet another can of worms. I had one and would do it

again because I gained useful information. Not everyone does.

Unfortunately it's difficult/impossibl e to tell who will gain

information and who won't. This is a very tough call and

I would never tell someone do it or don't do it. What I would say

is get yourself to an ILD (interstitial lung disease) expert and bring

the issue up with that person. Would they recommend a biopsy andÂÂ

why? Gather as much information as possible in order to help you

make your decision.ÂÂ

> > > ÂÂ

> > > Beth

> > > Moderator

> > > Fibrotic NSIP 06/06 Dermatomyositis 11/08

> > > ÂÂ

> > > ÂÂ

> > >

> > >

> > >

> > >

> > > ____________ _________ _________ __

> > > From: Peggy pac1773@

> > > To: Breathe Support Support Breathe-Support@ yahoogroups. com

> > > Sent: Wed, December 2, 2009 3:37:19 PM

> > > Subject:

> > >

> > > ÂÂ

> > > Hi Patti, You are so right attitude is the way to fight this

disease. Nothing will help the IPF.

> > > There isn't any data to say prednisone helps.. my experience was

prednisone does nothing for IPF. It is the BEST and the WORST drug. I

have been diagnosed 5 1/2 years and am sure I had this 4 or 5 years

before. I guess you have to live it to know these things that will help

and what does not.. WE are all different so thing react differently but

IPF is IPF.. I feel so bad for our sweet members that have a lung biopsy

only to be told you have IPF or it is inconclusive. Infection is such a

high risk. We don't hear that much about it because they don't make it

through it.ÂÂ

> > > I don't want to scare you or the other newbies but I am just so

angry with this disease.

> > > I guess I have said enough for now. I am sure I'll hear about this

one.. LOL ÂÂ

> > >

> > >

> > >

> > >

> > >

> > > Love & Prayers

> > > Peggy, IPF 2004

> > >

> >

>

[Guest guest]

I'm older than you.......I've never been a big music fan......have to turn in my gay card.............I'm an artis so "visual" is more important to me.

<FONT face="comic sans ms" color=#40007f size=3> Soulliere & nbsp; <IMG src="http://us.i1.yimg.com/us.yimg.com/i/mesg/tsmileys2/50.gif"></FONT>

To: Breathe-Support Sent: Fri, December 4, 2009 3:56:33 PMSubject: Re: The prednisone debate and the lung biopsy debate

Oh ,You do know how irresistible gay guys are to us older women don't you? My favorite old cassette tape was my Best of Queen. Did you know Freddycould sing through four octives? When the cassette died I had to goonline and download it. One of my best road trip tapes.Dyane, 54, Phoenix, IIP 02 now NSIP 09, Breast Cancer, Psoriasis,Lipodermatosclerosi s, Diabetes, and now a RA like autoimmune component,yadda yadda yadda.>>> "Life is not a journey to the grave with intentions of arriving is apretty, well-preserved body, but rather to skid in broadside, thoroughlyused up, totally worn out, chocolate in one hand, Margaritas in theother, loudly proclaiming "Holy **** What a ride!".">> > >> > > These are both issues that each individual has toÂÂsort out for themselves. WE ARE ALL DIFFERENT. I was onhigh doses of iv steroids in the hospital and ahigh dose of oral prednisone at home for months. It saved my lifeand then stablized my disease. Would I recommend it for everyone?Absolutely not but it will help some people, even a smallpercentage of those with IPF respond favorably to prednisone. That'swhy some (including some doctors) feel it's worth a try.

WhenI was on it I was fortunate in that I had aÂÂphysician who was aggressive in helping me manage the sideeffects. I've been off pred now for nearly 3 years but I would do it allover again in exactly the same way if the need arose.> > > Some react miserably to prednisone and it does nothing for them.The frustration is intense and understandable. It's not foreveryone and our physicians should explain the risks vs rewardsbefore starting us down that road when at all possible.> > >> > > Lung biopsy....yet another can of worms. I had one and would do itagain because I gained useful information. Not everyone does.Unfortunately it's difficult/impossibl e to tell who will gaininformation and who won't. This is a very tough call andI would never tell someone do it or don't do it. What I would sayis get yourself to

an ILD (interstitial lung disease) expert and bringthe issue up with that person. Would they recommend a biopsy andÂÂwhy? Gather as much information as possible in order to help youmake your decision.ÂÂ> > > ÂÂ> > > Beth> > > Moderator> > > Fibrotic NSIP 06/06 Dermatomyositis 11/08> > > ÂÂ> > > ÂÂ> > >> > >> > >> > >> > > ____________ _________ _________ __> > > From: Peggy pac1773@> > > To: Breathe Support Support Breathe-Support@ yahoogroups. com> > > Sent: Wed, December 2, 2009 3:37:19 PM> > > Subject: > > >> > > ÂÂ> > > Hi Patti, You are so right attitude is the way to fight thisdisease. Nothing will help the IPF.> > > There

isn't any data to say prednisone helps.. my experience wasprednisone does nothing for IPF. It is the BEST and the WORST drug. Ihave been diagnosed 5 1/2 years and am sure I had this 4 or 5 yearsbefore. I guess you have to live it to know these things that will helpand what does not.. WE are all different so thing react differently butIPF is IPF.. I feel so bad for our sweet members that have a lung biopsyonly to be told you have IPF or it is inconclusive. Infection is such ahigh risk. We don't hear that much about it because they don't make itthrough it.ÂÂ> > > I don't want to scare you or the other newbies but I am just soangry with this disease.> > > I guess I have said enough for now. I am sure I'll hear about thisone.. LOL ÂÂ> > >> > >> > >> > >> > >> > > Love & Prayers> > >

Peggy, IPF 2004> > >> >>

[Guest guest]

Ha Age has never been important....but I am so not artistic it is sad..

Hugs anyhow

Dyane, 54, Phoenix, IIP 02 now NSIP 09, Breast Cancer, Psoriasis,

Lipodermatosclerosi s, Diabetes, and now a RA like autoimmune component,

yadda yadda yadda.

>

>

> " Life is not a journey to the grave with intentions of arriving is a

pretty, well-preserved body, but rather to skid in broadside, thoroughly

used up, totally worn out, chocolate in one hand, Margaritas in the

other, loudly proclaiming " Holy **** What a ride! " . "

>

> > > >

> > > > These are both issues that each individual has

toÂÂ

> sort out for themselves. WE ARE ALL DIFFERENT. I was on

> high doses of iv steroids in the hospital

and a

> high dose of oral prednisone at home for months. It saved my life

> and then stablized my disease. Would I recommend it for

everyone?

> Absolutely not but it will help some people, even a

small

> percentage of those with IPF respond favorably to prednisone. That's

> why some (including some doctors) feel it's worth a try.

When

> I was on it I was fortunate in that I had

aÂÂ

> physician who was aggressive in helping me manage the

side

> effects. I've been off pred now for nearly 3 years but I would do it

all

> over again in exactly the same way if the need arose.

> > > > Some react miserably to prednisone and it does nothing for them.

> The frustration is intense and understandable. It's not

for

> everyone and our physicians should explain the risks vs

rewards

> before starting us down that road when at all possible.

> > > >

> > > > Lung biopsy....yet another can of worms. I had one and would do

it

> again because I gained useful information. Not everyone

does.

> Unfortunately it's difficult/impossibl e to tell who will gain

> information and who won't. This is a very

tough call and

> I would never tell someone do it or don't do it. What I

would say

> is get yourself to an ILD (interstitial lung disease) expert and bring

> the issue up with that person. Would they recommend a biopsy

andÂÂ

> why? Gather as much information as possible in order to

help you

> make your decision.ÂÂ

> > > > ÂÂ

> > > > Beth

> > > > Moderator

> > > > Fibrotic NSIP 06/06 Dermatomyositis 11/08

> > > > ÂÂ

> > > > ÂÂ

> > > >

> > > >

> > > >

> > > >

> > > > ____________ _________ _________ __

> > > > From: Peggy pac1773@

> > > > To: Breathe Support Support Breathe-Support@ yahoogroups. com

> > > > Sent: Wed, December 2, 2009 3:37:19 PM

> > > > Subject:

> > > >

> > > > ÂÂ

> > > > Hi Patti, You are so right attitude is the way to fight this

> disease. Nothing will help the IPF.

> > > > There isn't any data to say prednisone helps.. my experience was

> prednisone does nothing for IPF. It is the BEST and the WORST drug. I

> have been diagnosed 5 1/2 years and am sure I had this 4 or 5 years

> before. I guess you have to live it to know these things that will

help

> and what does not.. WE are all different so thing react differently

but

> IPF is IPF.. I feel so bad for our sweet members that have a lung

biopsy

> only to be told you have IPF or it is inconclusive. Infection is such

a

> high risk. We don't hear that much about it because they don't make it

> through it.ÂÂ

> > > > I don't want to scare you or the other newbies but I am just so

> angry with this disease.

> > > > I guess I have said enough for now. I am sure I'll hear about

this

> one.. LOL ÂÂ

> > > >

> > > >

> > > >

> > > >

> > > >

> > > > Love & Prayers

> > > > Peggy, IPF 2004

> > > >

> > >

> >

>

[Guest guest]

thanks hon

<FONT face="comic sans ms" color=#40007f size=3> Soulliere & nbsp; <IMG src="http://us.i1.yimg.com/us.yimg.com/i/mesg/tsmileys2/50.gif"></FONT>

To: Breathe-Support Sent: Fri, December 4, 2009 4:05:28 PMSubject: Re: The prednisone debate and the lung biopsy debate

Ha Age has never been important... .but I am so not artistic it is sad..Hugs anyhowDyane, 54, Phoenix, IIP 02 now NSIP 09, Breast Cancer, Psoriasis,Lipodermatosclerosi s, Diabetes, and now a RA like autoimmune component,yadda yadda yadda.>>> "Life is not a journey to the grave with intentions of arriving is apretty, well-preserved body, but rather to skid in broadside, thoroughlyused up, totally worn out, chocolate in one hand, Margaritas in theother, loudly proclaiming "Holy **** What a ride!".">> > > >> > > > These are both issues that each individual hastoÂÂ> sort out for themselves. WE ARE ALL DIFFERENT. I was on> high doses of iv steroids in the hospitaland a> high dose of oral prednisone at home for months. It saved my life>

and then stablized my disease. Would I recommend it foreveryone?> Absolutely not but it will help some people, even asmall> percentage of those with IPF respond favorably to prednisone. That's> why some (including some doctors) feel it's worth a try.When> I was on it I was fortunate in that I hadaÂÂ> physician who was aggressive in helping me manage theside> effects. I've been off pred now for nearly 3 years but I would do itall> over again in exactly the same way if the need arose.> > > > Some react miserably to prednisone and it does nothing for them.> The frustration is intense and understandable. It's notfor> everyone and our physicians should explain the risks vsrewards> before starting us down that road when

at all possible.> > > >> > > > Lung biopsy....yet another can of worms. I had one and would doit> again because I gained useful information. Not everyonedoes.> Unfortunately it's difficult/impossibl e to tell who will gain> information and who won't. This is a verytough call and> I would never tell someone do it or don't do it. What Iwould say> is get yourself to an ILD (interstitial lung disease) expert and bring> the issue up with that person. Would they recommend a biopsyandÂÂ> why? Gather as much information as possible in order tohelp you> make your decision.ÂÂ> > > > ÂÂ> > > > Beth> > > > Moderator> > > > Fibrotic NSIP 06/06 Dermatomyositis

11/08> > > > ÂÂ> > > > ÂÂ> > > >> > > >> > > >> > > >> > > > ____________ _________ _________ __> > > > From: Peggy pac1773@> > > > To: Breathe Support Support Breathe-Support@ yahoogroups. com> > > > Sent: Wed, December 2, 2009 3:37:19 PM> > > > Subject: > > > >> > > > ÂÂ> > > > Hi Patti, You are so right attitude is the way to fight this> disease. Nothing will help the IPF.> > > > There isn't any data to say prednisone helps.. my experience was> prednisone does nothing for IPF. It is the BEST and the WORST drug. I> have been diagnosed 5 1/2 years and am sure I had this 4 or 5 years> before. I guess you have to live it to

know these things that willhelp> and what does not.. WE are all different so thing react differentlybut> IPF is IPF.. I feel so bad for our sweet members that have a lungbiopsy> only to be told you have IPF or it is inconclusive. Infection is sucha> high risk. We don't hear that much about it because they don't make it> through it.ÂÂ> > > > I don't want to scare you or the other newbies but I am just so> angry with this disease.> > > > I guess I have said enough for now. I am sure I'll hear aboutthis> one.. LOL ÂÂ> > > >> > > >> > > >> > > >> > > >> > > > Love & Prayers> > > > Peggy, IPF 2004> > > >> > >> >>