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Joy

You're stating that as if its fact. It isn't in all circumstances.

Furthermore, people do weigh quality vs. quantity. Taking or not taking

prednisone is based on many factors, including the nature of their

disease, their age, other medical conditions, and personal choice.

>

> Do people who won't take Prednisone not know that they are shortening

> their lives?

> joy

>

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Joy,

I'm not sure what your question is intended to do. The premise of this question seems to be that prednisone will always extend the life of pulmonary fibrosis patients and that is not true. It very much depends on the type of fibrosis and what other medical issues the individual may have.

Beth-Moderator

Fibrotic NSIP 06/06 UCTD 06/08

"Take chances, make mistakes and get messy!"

Miss Frizzle

To: Breathe-Support Sent: Friday, November 7, 2008 11:17:09 PMSubject: Prednisone

Do people who won't take Prednisone not know that they are shortening their lives?joy

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Without Prednisolone I would have died when I was 25. It was the only thing that turned my symptoms around. Also I have NSIP which is known to be responsive to pred. I am now 39. Should I not have taken it then?

>> Do people who won't take Prednisone not know that they are shortening > their lives?> joy>

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I am on 10 mg of prednisone a day. I do not think I could breath without it. I hate it, I hate the weight gain, the sugar, I hate the fact that my immune system is shot and that I get every BAD infection there is pseudonomas, kleb. you name I have had it. It freaks me out bottom line I could not breath without it. I have had this ipf for 10 years now and been on pred.for it seems forever.AmyFrom: Zena

To: Breathe-Support Sent: Saturday, November 8, 2008 8:12:30 AMSubject: Re: Prednisone

Without Prednisolone I would have died when I was 25. It was the only thing that turned my symptoms around. Also I have NSIP which is known to be responsive to pred. I am now 39. Should I not have taken it then?

>> Do people who won't take Prednisone not know that they are shortening > their lives?> joy>

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I don't know...I am not personally aware that NOT taking it shortens life. How did you come by that info?

This is the first time I've heard this.

MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

Prednisone

Do people who won't take Prednisone not know that they are shortening their lives?joy

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Amy ... I'm sorry for all you have been through and still continue to cope with. Coping really wears of the edges doesn't it.

Keep on keepin' on.

MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

Re: Prednisone

Without Prednisolone I would have died when I was 25. It was the only thing that turned my symptoms around. Also I have NSIP which is known to be responsive to pred. I am now 39. Should I not have taken it then?

>> Do people who won't take Prednisone not know that they are shortening > their lives?> joy>

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MB

See, thats the problem we have to be very careful of here. I don't want anyone to decide not to take prednisone just because I have decided to. I've made my decision after talking to 3 pulmonologists, and several other doctors including those who have known me longest. I've made it based on three definitive biopsy reports. I've also researched the subject widely. Its a shame that no major study of Prednisone for UIP has ever been conducted, but many small ones have been and not a single one I have found has shown in my specific situation a benefit. I not only have UIP, I have no inflammation. Sometimes people with UIP, do have some inflammation. I have a monstrous list of other conditions. I've had a very good last twelve months and if I can have one more year that good, I wouldn't trade those for ten years as they would likely be for me on prednisone. Note: I didn't say for anyone else, just me. Unfortunately, running the trials now for patients with UIP may be impossible as one of the problems they have experienced in the past is an inability to maintain enough of the group long enough. Too many participants have either died or had to be removed because of other issues or side effects, from both the predinisone and the non-prednisone side of the group.

Now, I did find a very interesting debate from 2003, between Dr. Talmedge King and Dr. Ganesh Raghu, two highly acclaimed doctors from Seattle (Although after his involvement with Actimune, I personally would not seen Dr. Raghu, but he still is highly regarded my many).

Dr. King's argument was simply they don't work on UIP. There have been many small tests and groups followed and he referred to one of 330 patients. His conclusion was that UIP is not inflammatory in nature and even when it does include inflammation, the steroids help with the inflammation but not with the disease itself.

Dr. Raghu gave three basic reasons for using Prednisone. First, he gave the difficulty of diagnosis of UIP. (I have three separate biopsy reports and three separate pulmonologists diagnoses, all with no uncertainty). So he suggests trying prednisone and if it works you have NSIP and if it doesn't you have UIP. (Supporting theory it doesn't help UIP). The second reason he gives is that some UIP patients also have inflammation (there is no evidence I do). The third reason he gives is that sometimes you can have UIP and NSIP. I don't.

http://www.pulmonaryreviews.com/nov03/pr_nov03_cortico.html

A few other studies I looked at:

Mayo, 1998. Colchicine vs. Prednisone, 10 patients each. Of the 10 prednisone patients, 7 showed significant decline, 1 weakened and went into nursing home, 1 withdrew, 1 died. Of the 9 Colchicine, 5 declined, 1 withdrew, failed because of severe diarrhea. Mayo ran another test with 44 patients, basically same results.

Mayo, 2000. Reviewed clinical records of 487 patients. no significant difference in survival between those patients treated with colchicine or prednisone and those on no therapy.

ton, 2004. Basically confirms difference in success, UIP vs. NSIP. Surgical lung biopsies from 168 patients with IIP were reviewed and placed into the new classification scheme. A subset of patients with UIP and NSIP (n = 39) were treated with oral corticosteroids at 1 mg/kg ideal body weight per day for 1 month and prednisone 40 mg/d for 2 months. Patients with NSIP were stable or improved on prednisone (9 of 10 patients) more commonly than patients with UIP (14 of 29 patients). Clinical improvement in patients with UIP receiving on high-dose prednisone (defined by a 10-point improvement in clinical, radiologic, physiologic score) occurred in 5 of 29 patients. Patients who improved or were stable had a better long-term prognosis than those who progressed. The clinical message is that a high-dose corticosteroid trial produces clinical improvement with surprisingly high frequency. Steroid nonresponders, particularly with UIP, should be transitioned off corticosteroids.

Pulmonary Roundtable-States reason for prednisone on UIP is difficulty in diagnosis.

Duke-Interesting article regarding no effect of Prednisone and Actimune but primarily interesting because it referred to previous treatment with Prednisone showed promise but that was before NSIP was known and recognized separately.

Chest Journal, 2007. Indicated that there may be some benefit of prednisone in a small subset of UIP patients with activated cytolytic lung lymphocytes.

Mayo, 2001. Interesting study of PM and DM with ILD's. Showed that of those with either of the Myositis, only one of the 22 had UIP. The others all had NSIP, DAD or BOOP. Interesting to me because there was some suspicion I might have PM but rheumatologists here don't concluded that.

Cleveland Clinic-States firmly it doesn't help UIP and does all others.

So this will be a continuing argument in the medical profession. You have to decide but only based on your situation. Not based on mine or anyone elses. I chose not to use prednisone. If I develop a connective tissue disease, I may change. If I had NSIP I definitely would use it. If I had inflammation or Alveolitis, I might try it. I will use brief dosages for acute acerbations.

>> Joy,> I'm not sure what your question is intended to do. The premise of this question seems to be that prednisone will always extend the life of pulmonary fibrosis patients and that is not true. It very much depends on the type of fibrosis and what other medical issues the individual may have. > > > Beth-Moderator> Fibrotic NSIP 06/06 UCTD 06/08 > > "Take chances, make mistakes and get messy!"> Miss Frizzle> > > > > ________________________________> To: Breathe-Support > Sent: Friday, November 7, 2008 11:17:09 PM> Subject: Prednisone> > > Do people who won't take Prednisone not know that they are shortening > their lives?> joy>

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Sher

If you look at all ILD's as a whole, you could state on the whole

Prednisone prolongs life. It absolutely does on NSIP and many other

forms. There is no real evidence it does on UIP but most doctors still

prescribe it. Some don't for UIP.

>

> I don't know...I am not personally aware that NOT taking it shortens

life. How did you come by that info?

> This is the first time I've heard this.

>

> MamaSher, age 70. IPF 3-06, OR.

> Nasturtiums

> Don't fret about tomorrow, God is already there!

>

> Prednisone

>

>

> Do people who won't take Prednisone not know that they are shortening

> their lives?

> joy

>

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Bruce ... I read your post before this one. Interesting.

Joy's post about not taking pred (shortens lives) is a first for me. I'm glad I haven't been asked to take it. If taking pred lengthens life that is good but the quality of life matters too. I for one...only talking about me here...don't want the side effects.

I did take it for a short time for some darn thing or another, not related to IPF. That's ok for me. Obviously the med has a purpose and for some of us here it has been good.

MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

Prednisone>>> Do people who won't take Prednisone not know that they are shortening> their lives?> joy>

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Let's hope that Joy will clarify what she meant by her post as I'm really baffled by it. Until she does, we're all just guessing about where she's coming from and what the purpose is.

Joy are you out there? Help clue us in. Thanks!

Beth-Moderator

Fibrotic NSIP 06/06 UCTD 06/08

"Take chances, make mistakes and get messy!"

Miss Frizzle

To: Breathe-Support Sent: Saturday, November 8, 2008 1:00:55 PMSubject: Re: Re: Prednisone

Bruce ... I read your post before this one. Interesting.

Joy's post about not taking pred (shortens lives) is a first for me. I'm glad I haven't been asked to take it. If taking pred lengthens life that is good but the quality of life matters too. I for one...only talking about me here...don't want the side effects.

I did take it for a short time for some darn thing or another, not related to IPF. That's ok for me. Obviously the med has a purpose and for some of us here it has been good.

MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

Prednisone>>> Do people who won't take Prednisone not know that they are shortening> their lives?> joy>

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-I have been taking prednisone 2 and half years. IPF.. have

questioned about stopping it and all meds for awhile just to clean

my system. Basicly told not an option. I am on 20mg daily; when i

was sick beginning of the year took 30mg for a week..patti

-- In Breathe-Support , " Sher Bauman "

wrote:

>

> Bruce ... I read your post before this one. Interesting.

> Joy's post about not taking pred (shortens lives) is a first for

me. I'm glad I haven't been asked to take it. If taking pred

lengthens life that is good but the quality of life matters too. I

for one...only talking about me here...don't want the side effects.

> I did take it for a short time for some darn thing or another, not

related to IPF. That's ok for me. Obviously the med has a purpose

and for some of us here it has been good.

>

> MamaSher, age 70. IPF 3-06, OR.

> Nasturtiums

> Don't fret about tomorrow, God is already there!

>

> Prednisone

> >

> >

> > Do people who won't take Prednisone not know that they are

shortening

> > their lives?

> > joy

> >

>

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Actually, I've realised that I read it wrong last time. (Still really tired and stressed out from move) I read it that if you do take pred you will shorten your life, sorry.

As far as I know it depends on what type of PF you have and what other conditions you have. It is well reported that pred isn't effective for some, but very effective for others. Perhaps Joy has a type that is responsive to pred and has been told that in her case not taking it will shorten her life, but she understood it to mean that all PF is responsive?

Anyway, I'll apologise again for being hot headed earlier, I'll put it down to OD or something

Love Ze xx> >> > Do people who won't take Prednisone not know that they are shortening> > their lives?> > joy> >>

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Patti

You can't just stop prednisone. Even if you wanted to discontinue then

you'd have to go through a weaning process which could take considerable

time. However, my bet is that as long as you've taken them, you'd hit a

level in the process of weaning that trying to go below would affect you

adversely. If you feel something is helping, then best to stay the

course. Now over time you may decrease as many end up at 10 or 15 or 10

every other day as maintenance.

> > >

> > > I don't know...I am not personally aware that NOT taking it

> shortens

> > life. How did you come by that info?

> > > This is the first time I've heard this.

> > >

> > > MamaSher, age 70. IPF 3-06, OR.

> > > Nasturtiums

> > > Don't fret about tomorrow, God is already there!

> > >

> > > Prednisone

> > >

> > >

> > > Do people who won't take Prednisone not know that they are

> shortening

> > > their lives?

> > > joy

> > >

> >

>

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Patti ... do you have side effects from the pred? Is it a med that you think does indeed help you?

Speaking of 'cleaning out your system' I'm so tickled to do the same thing with ALL pain meds. I'm now down to 12 on the pain patch and within a few days will be totally off the pain meds. First time in 20 years! I'm doing fairly well. Of course have some pain but so far it's not as bad as the side effects/allergies from the meds. Good for Sher is what I say!

Anyway Patti, I hope the pred works well for you.

MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

Prednisone> >> >> > Do people who won't take Prednisone not know that they are shortening> > their lives?> > joy> >>

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Zena

I didn't see it as hot headed earlier. Guess I should read it

again...lol.

Its a good topic of conversation as it is a very difficult personal

choice and one needs information on which to base it. I read Joy's as

thinking that some of us might be shortening our lives by not taking it

and wondering why.

In your case it helped and thats all that one needs to know.

We have to work within the confines of what we know too. It's not like

someone can come up to you and say...ok, without it you get this many

years with this quality and with it you get this many with this quality.

Our situations vary in other ways too. If I had a child as you do, I'd

make different decisions than in my situation.

> > >

> > > Do people who won't take Prednisone not know that they are

> shortening

> > > their lives?

> > > joy

> > >

> >

>

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Sher

Good for Sher. Nice informed choice knowing the consequences. Also, your

getting off pain meds isn't irreversible if circumstances change. It's

just what you need now.

A few years ago I was having extreme reaction to meds and not sure which

one (reason I will never add but one at a time anymore). So, they took

me off everything for three days and introduced each again, one at a

time. Only problem was I slept only a total of one hour in those three

days (due to no sleep med). But it all worked out fine.

> > >

> > > I don't know...I am not personally aware that NOT taking it

> shortens

> > life. How did you come by that info?

> > > This is the first time I've heard this.

> > >

> > > MamaSher, age 70. IPF 3-06, OR.

> > > Nasturtiums

> > > Don't fret about tomorrow, God is already there!

> > >

> > > Prednisone

> > >

> > >

> > > Do people who won't take Prednisone not know that they are

> shortening

> > > their lives?

> > > joy

> > >

> >

>

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Amy,

I am on prednisone also and without it can't breathe. I hate being "chubby" and miss my old skinny self BUT I love that I can breathe and shop and breathe and play with grandkids and breathe and travel and breathe! It definately is a ballancing act and having to take the bad ( low immune system, bone loss, weight gain) with the good, but I am very appreciative that my body responds to it and my life has improved. Take care- R. (52) Sarcoid/PF 3/2006 Carlsbad, California

Subject: Re: Re: PrednisoneTo: Breathe-Support Date: Saturday, November 8, 2008, 6:02 AM

I am on 10 mg of prednisone a day. I do not think I could breath without it. I hate it, I hate the weight gain, the sugar, I hate the fact that my immune system is shot and that I get every BAD infection there is pseudonomas, kleb. you name I have had it. It freaks me out bottom line I could not breath without it. I have had this ipf for 10 years now and been on pred.for it seems forever.Amy

From: Zena <zeasman (AT) btinternet (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Saturday, November 8, 2008 8:12:30 AMSubject: Re: Prednisone

Without Prednisolone I would have died when I was 25. It was the only thing that turned my symptoms around. Also I have NSIP which is known to be responsive to pred. I am now 39. Should I not have taken it then?

>> Do people who won't take Prednisone not know that they are shortening > their lives?> joy>

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Zena,

No need to apologize, don't be silly. It was a confusing post to me also. I'm hoping Joy will come back and clarify what she meant and also let us know how she's doing. It's been awhile since we've heard from her prior to this!

Beth-Moderator

Fibrotic NSIP 06/06 UCTD 06/08

"Take chances, make mistakes and get messy!"

Miss Frizzle

To: Breathe-Support Sent: Saturday, November 8, 2008 1:19:37 PMSubject: Re: Prednisone

Actually, I've realised that I read it wrong last time. (Still really tired and stressed out from move) I read it that if you do take pred you will shorten your life, sorry.

As far as I know it depends on what type of PF you have and what other conditions you have. It is well reported that pred isn't effective for some, but very effective for others. Perhaps Joy has a type that is responsive to pred and has been told that in her case not taking it will shorten her life, but she understood it to mean that all PF is responsive?

Anyway, I'll apologise again for being hot headed earlier, I'll put it down to OD or something

Love Ze xx> >> > Do people who won't take Prednisone not know that they are shortening> > their lives?> > joy> >>

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I realize that my statement was short....but, I'm watching a woman die -

she refused Prednisone and is suffering. Every time I lower my dose of

Pred because I don't like taking it, my doc is upset - and I do know

that I cough more and have more difficulty. He said I could chose to

stay on 10 mg or 5 or less...but I would shorten my life. I also must

state that my PF is inflammatory and the Pred and Imuran reduces that.

I guess I'm just frustrated this week!!! I'm going to see another doc

to see if there is alternative tx. Joy

> >

> > Do people who won't take Prednisone not know that they are

shortening

> > their lives?

> > joy

> >

>

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Bruce

thanks, sometimes i go in my dream world and think if i stop

everything for awhile see what happens... i did ask penn the same

question about all the meds and he stated sometimes they can; but

again it is a weaning process... quite honestly, weaning would be an

issue as you said. I haven't been that brave or stupid to not listen

to the docs and just stop it; not yet... lol// thanks.. Patti

> > > >

> > > > I don't know...I am not personally aware that NOT taking it

> > shortens

> > > life. How did you come by that info?

> > > > This is the first time I've heard this.

> > > >

> > > > MamaSher, age 70. IPF 3-06, OR.

> > > > Nasturtiums

> > > > Don't fret about tomorrow, God is already there!

> > > >

> > > > Prednisone

> > > >

> > > >

> > > > Do people who won't take Prednisone not know that they are

> > shortening

> > > > their lives?

> > > > joy

> > > >

> > >

> >

>

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Here is one: about two years ago I said, "* & % #@" and stopped taking my 10 mg of prednisone. I did not know any better (what an idiot I was) I was off it for about 6 months. I think the only thing that saved me was the fact I was getting hydocort. shots every other month for RA in any event I ended up with some terrible infection and they put me back on pred. Now knowing what I know about stopping adisons etc. I guess I was lucky.AmyTo: Breathe-Support Sent: Saturday, November 8, 2008 1:21:21 PMSubject: Re: Prednisone

Patti

You can't just stop prednisone. Even if you wanted to discontinue then

you'd have to go through a weaning process which could take considerable

time. However, my bet is that as long as you've taken them, you'd hit a

level in the process of weaning that trying to go below would affect you

adversely. If you feel something is helping, then best to stay the

course. Now over time you may decrease as many end up at 10 or 15 or 10

every other day as maintenance.

> > >

> > > I don't know...I am not personally aware that NOT taking it

> shortens

> > life. How did you come by that info?

> > > This is the first time I've heard this.

> > >

> > > MamaSher, age 70. IPF 3-06, OR.

> > > Nasturtiums

> > > Don't fret about tomorrow, God is already there!

> > >

> > > Prednisone

> > >

> > >

> > > Do people who won't take Prednisone not know that they are

> shortening

> > > their lives?

> > > joy

> > >

> >

>

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Sher

CONGRATULATIONS... I THINK THAT IS AWESOME..

YOU GO GIRL, (no disrespect)

i gain weight easily, big round pumpkin face, am sure if i sit for a

moment and think about it yes.. have to laugh hate taking pills

always have.. and look at me now... and yes, even if i miss one day

there is a big difference in my breathing and wheezing.. i just tell

my doc i want to look normal for one month.. with the prednisone and

hypoxia i developed cataracts... the cataracts developed quickly and

within weeks progressed to where i could not see. Now some

calcification. and some auto immune cells decided to make their home

in my eyes.. so using prednisone drops in eyes and will probably

need these special injections in eyes.. oh, well, another journey

and something else to learn to share.. and have osteopenia at

present well find out this week if progressed..

Sher where is your pain and what is the source if don't mind me

asking. patti

> > >

> > > I don't know...I am not personally aware that NOT taking it

> shortens

> > life. How did you come by that info?

> > > This is the first time I've heard this.

> > >

> > > MamaSher, age 70. IPF 3-06, OR.

> > > Nasturtiums

> > > Don't fret about tomorrow, God is already there!

> > >

> > > Prednisone

> > >

> > >

> > > Do people who won't take Prednisone not know that they are

> shortening

> > > their lives?

> > > joy

> > >

> >

>

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: Does it make you shake? I hate that part of it. Carlsbad, my children live in Beaumont and Palm Desert.AmyTo: Breathe-Support Sent: Saturday, November 8, 2008 1:55:58 PMSubject: Re: Re:

Prednisone

Amy,

I am on prednisone also and without it can't breathe. I hate being "chubby" and miss my old skinny self BUT I love that I can breathe and shop and breathe and play with grandkids and breathe and travel and breathe! It definately is a ballancing act and having to take the bad ( low immune system, bone loss, weight gain) with the good, but I am very appreciative that my body responds to it and my life has improved. Take care- R. (52) Sarcoid/PF 3/2006 Carlsbad, California

From: Amy Dawn <amy7675 (AT) yahoo (DOT) com>Subject: Re: Re: PrednisoneTo: Breathe-Support@ yahoogroups. comDate: Saturday, November 8, 2008, 6:02 AM

I am on 10 mg of prednisone a day. I do not think I could breath without it. I hate it, I hate the weight gain, the sugar, I hate the fact that my immune system is shot and that I get every BAD infection there is pseudonomas, kleb. you name I have had it. It freaks me out bottom line I could not breath without it. I have had this ipf for 10 years now and been on pred.for it seems forever.Amy

From: Zena <zeasman (AT) btinternet (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Saturday, November 8, 2008 8:12:30 AMSubject: Re: Prednisone

Without Prednisolone I would have died when I was 25. It was the only thing that turned my symptoms around. Also I have NSIP which is known to be responsive to pred. I am now 39. Should I not have taken it then?

>> Do people who won't take Prednisone not know that they are shortening > their lives?> joy>

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Joy

I know watching someone die is difficult. But, she's not dying because

of taking or not taking prednisone, it's happening because of a disease.

There is nothing at this point in going back, no way to compare how her

life would have been with it. However, you talked about suffering.

Barring other complications such as PH there is much that can be done to

reduce the suffering. One needs to have the most comfort they can. All

the oxygen they need. Pain killers when they are needed. Hospice as a

choice when its needed. Make sure her pallative care is the best it can

possibly be.

Now, as to your situation, why is it you don't like the prednisone

anymore? What dosage are you on now? If you do lower coordinate a

careful lowering a little at a time with your doctor. Do you have other

conditions with your PF? The doctor can't tell you that your life will

be shorter on 10 mg. He can offer an opinion and say it may be. Only you

can weigh the alternatives with your feelings. Second opinions are

always good. How does the level of inflammation look compared to where

it once was? Has the doctor said? Ask all the questions you have and

make them listen. Talk to them about quality of life and length under

each alternative.

I'm very fortunate too that my pulmonologist listens and talks and, at

this point, he really knows me. He knows my history, my other

conditions, my mental state and even my outlook on life. I know this

isn't possible in all cases but, if you can achieve it, it sure makes it

easier.

There are no absolutes with any of the forms of PF or ILD's. There are

" best knowledge as of today " beliefs. Your doctor can't tell you how

long you'll live on 30 mg or 20 mg or 10 mg or 0 mg. Nor can he tell you

what those years will be like. All he can do is educate and advise based

on his beliefs. Another doctor may feel differently. Also, into

everything a doctor says, ultimately, some of his personal beliefs or

concerns come into play. My pulmonologist is humorous and a strong

believer in quality of life. My rheumatologist is serious and terrified

of death. As much as I'm sure he sees, he cannot accept emotionally

himself that I have an incurable and probably untreatable disease. His

life is treating and fixing. You can just tell the difference in their

voices and faces and their personal feelings toward death definitely

influence their medical recommendations whether they realize it or not.

> > >

> > > Do people who won't take Prednisone not know that they are

> shortening

> > > their lives?

> > > joy

> > >

> >

>

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