Prednisone

[Guest guest]

Joy

it's not easy watching someone die and as you have found out when

you stop the prednisone you change your quality. as i have said i

have told my doc several occassions to stop it. He just doesn't

answer me any more; he thinks i am having a hypoxic moment. i am on

the imuran 125mg and 20mg of prednisone. It just stinks at times..

hang in there and never stop looking or questioning patti

> > >

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

> shortening

> > > their lives?

> > > joy

> > >

> >

>

[Guest guest]

Hi Amy,

I used to live in Palm Desert and taught at Palm Desert High School for two years. It is so beautiful there. Do you ever come to visit your kids? I am slightly shaky at 12.5 mg but get incredibly worse once I pass 15. I too hate the shaking but I hate the weight gain more. My handwriting has definitely deteriorated, but I usually use the computer anyway so only my check writing suffers. Take care Amy- 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>

[Guest guest]

amy

so i guess the answer is listen to docs; and continue wearing my

pumpkin halloween costume for awhile. lol...thanks for input 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

> > > >

> > >

> >

>

[Guest guest]

The pain is primarily from Fibromyalgia (muscles, tendons and ligaments) and arthritis (joints). Not much left to play with! Arthritis in my back hurts the most...

But I'm really grateful I'm not in more pain than I am. I can handle this so far.

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> > >> >>

[Guest guest]

Zena--

glad you took the prednisone Pink Joyce IPF 3/06 Pennsylvania

Subject: Re: PrednisoneTo: Breathe-Support Date: Saturday, November 8, 2008, 8:12 AM

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>

[Guest guest]

I understand that prednisone relieves the symptoms of pf, but does not extend the lifePink Joyce IPF 3/06 Pennsylvania

Subject: Re: PrednisoneTo: Breathe-Support Date: Saturday, November 8, 2008, 7:31 AM

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

From: joynoel3208 <joynoel3208@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: 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

[Guest guest]

As I understand it Joyce, SOME forms of PF, NSIP being one, are slowed down by pred, however this isn't true for everycase. It actively slows the rate of scarring down in those that are responsive. So in that case I would say that it extends life, but only for the responsive forms. Whether or not it makes you feel any better if your PF isn't responsive or not I wouldn't know.

Love Ze xx> > Subject: Re: Prednisone> To: Breathe-Support > Date: Saturday, November 8, 2008, 7:31 AM> > > > > > > > > > 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> > > > > > > From: joynoel3208 <joynoel3208@ yahoo.com>> To: Breathe-Support@ yahoogroups. com> 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>

[Guest guest]

Sher

so sorry, i know several people with Fibromalgia and they tell me

the pain is great. And, can also see it.. My sister and i together

was a joke; she was 60 and had ovarian cancer. The two of us out was

funny; her trying to take care of me helping with my tanks etc and

me telling her she was worse. Her comment was you can live with pain

but not without breathing..lol wonder what she would say now to

you.. So glad you are handling it. have you tried the herbs; the gel

mats standing by the sink to take the pressure off. 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

> > > >

> > >

> >

>

[Guest guest]

Zena

DIDO that; nice to have you here... patti

> >

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

shortening

> > their lives?

> > joy

> >

>

[Guest guest]

Patti ... no I have not tried herbs. I'm not much into that and my system is so sensitive that I'm really hesitant to try much. There really is no "treatment" for FM anyway. Exercise is good but I no longer can do enough of that to be helpful. Either pain or SOB. So far O2 hasn't helped much either.

Now the gel mat sounds like a good idea. I'll have to look into that. Thanks.

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> > > >> > >> >>

[Guest guest]

Patti ... no I have not tried herbs. I'm not much into that and my system is so sensitive that I'm really hesitant to try much. There really is no "treatment" for FM anyway. Exercise is good but I no longer can do enough of that to be helpful. Either pain or SOB. So far O2 hasn't helped much either.

Now the gel mat sounds like a good idea. I'll have to look into that. Thanks.

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> > > >> > >> >>

[Guest guest]

I will be very hesitant to try narcotics again. Not because I'm an addict but because of the awful side effects/allergies I have to everyone.

I don't know yet what the next step will be or how bad the pain will be with nothing.

Not there quite yet.

I'm praying Dr God will step in about now and take over!

Bye.

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> > >> >>

[Guest guest]

Sher, I just remembered '92 when Fibro hit me like a ton of bricks. got me a spa and I would get in that hot water for 20 min or so and get relaxed enough to get to sleep. Maybe a good warm soak would help. Love & Prayers, PeggyFlorida,  IPF/UIP 2004"I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly." 

[Guest guest]

: Yes Palm Desert is beautiful. No I do not get there much. I am at the point in my disease that I cannot do simple tasks as I get way too winded. I do not walk much I cannot handle it. I had to laugh yeah who cares about shaking it is all about weight. We are funny.

Amy

To: Breathe-Support Sent: Saturday, November 8, 2008 6:00:13 PMSubject: Re: Re: Prednisone

Hi Amy,

I used to live in Palm Desert and taught at Palm Desert High School for two years. It is so beautiful there. Do you ever come to visit your kids? I am slightly shaky at 12.5 mg but get incredibly worse once I pass 15. I too hate the shaking but I hate the weight gain more. My handwriting has definitely deteriorated, but I usually use the computer anyway so only my check writing suffers. Take care Amy- 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>

[Guest guest]



oh my gosh Peggy...I can't get into a tub. Well I could get in but I couldn't get out! hhahahahaha.

Yes, the warm water is wonderful. One of the reasons Lysa and I went to the coast. Where we stay has a spa (ahhhhh) and then the pain clinic informs me no....water too hot...will exaggerate the pain patch. But I can do it next time by gum.

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

Re: Re: Prednisone

Sher, I just remembered '92 when Fibro hit me like a ton of bricks. got me a spa and I would get in that hot water for 20 min or so and get relaxed enough to get to sleep. Maybe a good warm soak would help.

Love & Prayers, Peggy

Florida, �IPF/UIP 2004

"I believe that friends are quiet angels�who lift us to our feet,�

when our wings�have trouble remembering how to fly."�

[Guest guest]

Hi Bruce! I have to say this email is nicer than your first one to

me! I have osteopenia from Pred, and fat from Pred, but it is

keeping the inflammation down. I had forgotten that some pf does not

respond to Pred....I am curious as to what the referral doc will say.

My first doc said I didn't need the pred 'cause it wasn't

working...but I guess it must be working some. I really should not

complain - I am not on O2 any longer, and I've actually lost a couple

pounds (not eating much usually not so hungry anymore)....but, I am

coughing and my chest hurts..normal stuff! Hate the CPAP too, but

was told it was a life-saving device - so there you are. I'm nearly

a picture of health on the outside! I've been off the board 'cause I

just have not much to say. I was so sad to lose Joyce.

Take care, Joy

> > > >

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

> > shortening

> > > > their lives?

> > > > joy

> > > >

> > >

> >

>

[Guest guest]

Guess I've confused alot of people. Sorry. Stated this way then:

Taking Pred lengthens lives - my friend refused to use it...I think she

was asked to, by her choice she is now near the end of her life. I am

embarrassed by all the controversy! Sorry Joy

> >

> > 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

> >

>

[Guest guest]

Bruce, Dr. Raghu is my doctor. He was going to lower my doese to 5mg if

my PFT were the same as in August. I just reduced to 5 mg about 3 weeks

ago...thinking it was okay = however, my PFTs showed a decline (in that

short of time) he said to take the 10 mg - I am.

> >

> > 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

> >

> >

> >

> >

> > ________________________________

> > From: joynoel3208 joynoel3208@

> > 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

> >

>

[Guest guest]

Just a clarification here re Prednisone...it NEVER EVER STOPS the scarring or fibrosis..it acts on INFLAMATION only....it's thought that in SOME forms of PF inflammation plays a bigger role than in other forms. IF the inflamation is a pre-cusor to scarring then Prednisone can 'put off' the scarring action. The International Respiratory Community Jury is out on whethere this IS what actually occurs in PF..they STILL don't know how it works!

NSIP is a really curly one 'cos there's 2 forms of that & Prednisone seems to help one form more than the other (Cellular NSIP) Fibrotic NSIP acts more like UIP even so it has been reported that a few people with both Fibrotic NSIP & UIP have had some benefit from Prednisone for the inflammation only! The number of UIP cases that benefit seem to be very few & far between!

Regardless of the type of PF, a person has IF they have bout of Pneumonia then Prednisone for short term use, will most likey be prescribed to deal with the Inflammation! This sort of use of Prednisone does NOT cause all the nasty side-effects seen with prolonged use!

That is of course my interpretation drawn from the oodles of research papers I've accessed on the Major Teaching Centres world-wide...please use Mr Google to follow-up.. there is heaps out there.

Just make sure you're on a reputable site!

in Oz

PF: Fibrotic NSIP/UIP???

Reynaud's

May 2007

> >> > From: Beth mbmurtha@> > Subject: Re: Prednisone> > To: Breathe-Support > > Date: Saturday, November 8, 2008, 7:31 AM> >> >> >> >> >> >> >> >> >> > 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> >> >> >> >> >> >> > From: joynoel3208 <joynoel3208@ yahoo.com>> > To: Breathe-Support@ yahoogroups. com> > 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> >>

[Guest guest]

Joy

Predisone lengthens some lives. It doesn't change the length of some

lives. It shortens some lives. It depends on many factors. We each face

our own different circumstances and choices. Your friend's length and

quality of life may or may not have been better with prednisone. We'll

never know. I know you feel she made a mistake and you probably feel I'm

making one. But, there are no absolutes and its not simple. I hope

people make informed decisions but I respect whatever choices they make

in regards to their treatment and choices. The three most difficult and

controversial choices we face with this disease appear to be VATS and

prednisone and transplant (although many don't actually have that choice

as they aren't candidates).

It's always interesting on each of those to hear the choices people here

have made and how they've been affected. When I took a poll here out of

57 people who responded, 5 never had prednisone offered to them, 11

chose not to use it, 16 had been on it and were either off or in the

process of getting off, 19 were on it and had seen a benefit, and 6 were

on it and had seen no benefit. Hopefully with the new attempts to

collect data on PF'ers more will be learned and now there is finally a

clinical trial planned to determine the effect of Imuran, Prednisone and

NAC when given to those with fairly mild IPF. That should be a very

interesting trial. Until then the debate over IPF/UIP will continue.

With the other forms of Interstitial Lung Disease such as NSIP, the

concensus is that it does help and not only reduces the symptoms but

does prolong life at least in some significant percentage of cases.

> > >

> > > 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

> > >

> >

>

[Guest guest]

Joy

He and you know your situation better than anyone else, including your

form of PF, your amount of inflammation, and your other medical

conditions. Many who are on and reach 10 mg and then try to go lower are

not able to. If 10 mg is what works best for someone then thats where

they need to be.

> > >

> > > 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

> > >

> > >

> > >

> > >

> > > ________________________________

> > > From: joynoel3208 joynoel3208@

> > > 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

> > >

> >

>

[Guest guest]

Joy

You are one of the few lucky ones who improved enough to get off of

oxygen. You saturation remains good even when exerting yourself?

You say your chest hurts. Is that just when you cough or all the time? I

know you can't carry a pillow around with you all the time but if

coughing hurts it, holding a pillow against it when you cough does help.

Guess your hand if not a pillow perhaps although I never tried that. I'm

fortunate that coughing hasn't yet hit me big time, any worse than from

my allergies before.

> > > > >

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

> > > shortening

> > > > > their lives?

> > > > > joy

> > > > >

> > > >

> > >

> >

>

[Guest guest]

Bruce, my chest pain is the tightness and somewhat uncomfortable. It's

not severe. Thanks for your input. I may live to be 80 after all!!!

Joy

> > > > > >

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

> > > > shortening

> > > > > > their lives?

> > > > > > joy

> > > > > >

> > > > >

> > > >

> > >

> >

>

[Guest guest]

To everyone....I thank everyone who contributed information regarding

use of Prednisone...what wonderful information and informative folks.

Thank you again for your help. Joy

> > > > >

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

> > > shortening

> > > > > their lives?

> > > > > joy

> > > > >

> > > >

> > >

> >

>

[Guest guest]

Dear Joy,

Now no need to feel embarrassed by the Prednisone debate ..there was no ill feeling & Prednisone comes up for Debate regularly... it probably will until the day PF is finally understood in ALL its forms!

I'm sorry about your friend..its so hard losing our friends. Losing our Queen Joyce was a terrible blow for all of us on this Board.

Please keep in touch with us all, I do look out for your Posts...

Regards,

in Oz

> > > >> > > > 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> > > >> > >> >>