Re: Hi everyone.... I'm new to the group and I have a question!

[Guest guest]

HI Jay,

I'm also new to the group. I have had the " big " round for 5 or 6 months in 2005,

after the HP (hypersensitivity pneumonitis) diagnosis. It helped me so much I'd

do it again. I'm still not sure that it didn't treat the HP and not the IPF.

I've been off and on since then taking it in " rounds " that I prescribe to

myself as needed. Dr. gives me all I want. Maybe this is b/c I'm a retired RN.

Not sure.

I am not yet on o2 but getting close. My advice is to try it and if it helps, go

for it as long as you understand and recognize the side effects. Some have many

other have few. Mine are pretty medium to mild so far. That doesn't count the

ones you cannot see. I also took osteoporosis med while on the long heavy

round. No bone loss that time.

ann, IPF 1997, HP 2004

[Guest guest]

Hi Jay, My feelings on prednisone is so well known on this board.. not much good to say EXCEPT it is the best for infections. It does give horrible side effects. I suffered them all so I am sure you will hear from others. I also have IPF DX in 2004Prednisone does nothing for IPF.... that we all know to be true. I have however been on a quick 5 day round if I get a nasty cold or something. But NO i would never go on it again.. 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."  How does everyone feel about Prednisone? My Doctors are all so wishy-washy when it comes to the subject. One say "You should be on it". One says "it's side effects outweigh it's benefits" and yet a 3rd says "If you read up on it it says it has no help for IPF". It all gets very confusing! Since last week I've been sitting here with a prescription for it and I just can't decide... take it or no. Then I end out in emergency with fluid building up and pain in my side. They put me on a short course of Prednisone. LOL I am diabetic but so far the highest my sugar has been is 185, and that is controllable I think, so it's not really beating me up in that direction but still.... I'm at that take it or no point.Anyway, just thought I'd ask. I know we're not all Doctors here but I'd say many of us are Smee's (subject matter experts), and sometimes another voice is a nice thing.I'd better check on my wife. She's in the kitchen making a home made Hummingbird cake for my Mom's 83rd birthday. Thanks,JayIPF 11/08The spirit of a man will sustain his infirmity; but a wounded spirit who can bear?  ~Proverbs 18:14

[Guest guest]

Hi Jay,

Welcome to Breathe Support! I'm sorry you had reason to look for a group like this but since you did I'm glad you found us.

You have opened the proverbial Pandora's box by asking the dreaded prednisone question. You will get every kind of opinion here that you can imagine and the bottom line is you have to weigh all the information and decide whether it's something that makes sense for you to try.

In general prednisone is said not to do much of anything for IPF/UIP patients. But even that truth has it's limitations as there are some folks with IPF that have been helped by a course of prednisone. My opinion (for what that's worth LOL) is that it depends very much on how much inflammation you have going on. Those with more inflammation are often helped by prednisone's powerful anti-inflammatory action. People with an underlying autoimmune condition are often helped by prednisone.

Back in 2006 when I was diagnosed with NSIP I was on high doses of prednisone (up to 100mg) for several months. I had many side effects but my physician was pro-active in helping me manage them. I've been off prednisone completely for a bit over 2 years and have remained stable but I would take it again if I had to since I know it helps me.

Again, this is a decision that only you can make. Since you are already a diabetic you would want to be extremely vigilant about your blood sugar levels on prednisone. Unstable blood sugar is something that happens to me pretty much instantly on doses of prednisone over 20mg. Under 20 that side effect disappears for me.

You'll get lots of opinions here, take it all in and then decide what's best for you!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Tuesday, April 14, 2009 5:21:57 PMSubject: Hi everyone.... I'm new to the group and I have a question!

How does everyone feel about Prednisone? My Doctors are all so wishy-washy when it comes to the subject. One say "You should be on it". One says "it's side effects outweigh it's benefits" and yet a 3rd says "If you read up on it it says it has no help for IPF". It all gets very confusing! Since last week I've been sitting here with a prescription for it and I just can't decide... take it or no. Then I end out in emergency with fluid building up and pain in my side. They put me on a short course of Prednisone. LOL I am diabetic but so far the highest my sugar has been is 185, and that is controllable I think, so it's not really beating me up in that direction but still.... I'm at that take it or no point.Anyway, just thought I'd ask. I know we're not all Doctors here but I'd say many of us are Smee's (subject matter experts), and sometimes another voice is a nice thing.I'd better check on my wife. She's in the kitchen making a

home made Hummingbird cake for my Mom's 83rd birthday. Thanks,JayIPF 11/08The spirit of a man will sustain his infirmity; but a wounded spirit who can bear? ~Proverbs 18:14

[Guest guest]

Just one clarification... prednisone is sometimes used in addition to antibiotics when someone has an infection accompanied by inflammation. Prednisone doesn't do anything for the infection, that's what the antibiotic is for. Prednisone tackles the inflammation.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Tuesday, April 14, 2009 6:03:59 PMSubject: Re: Hi everyone.... I'm new to the group and I have a question!Hi Jay, My feelings on prednisone is so well known on this board.. not much good to say EXCEPT it is the best for infections.

It does give horrible side effects. I suffered them all so I am sure you will hear from others. I also have IPF DX in 2004

Prednisone does nothing for IPF.... that we all know to be true. I have however been on a quick 5 day round if I get a nasty cold or something. But NO i would never go on it again..

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."

How does everyone feel about Prednisone? My Doctors are all so wishy-washy when it comes to the subject. One say "You should be on it". One says "it's side effects outweigh it's benefits" and yet a 3rd says "If you read up on it it says it has no help for IPF". It all gets very confusing! Since last week I've been sitting here with a prescription for it and I just can't decide... take it or no. Then I end out in emergency with fluid building up and pain in my side. They put me on a short course of Prednisone. LOL I am diabetic but so far the highest my sugar has been is 185, and that is controllable I think, so it's not really beating me up in that direction but still.... I'm at that take it or no point.Anyway, just thought I'd ask.

I know we're not all Doctors here but I'd say many of us are Smee's (subject matter experts), and sometimes another voice is a nice thing.I'd better check on my wife. She's in the kitchen making a home made Hummingbird cake for my Mom's 83rd birthday. Thanks,JayIPF 11/08The spirit of a man will sustain his infirmity; but a wounded spirit who can bear? ~Proverbs 18:14

[Guest guest]

Just one clarification... prednisone is sometimes used in addition to antibiotics when someone has an infection accompanied by inflammation. Prednisone doesn't do anything for the infection, that's what the antibiotic is for. Prednisone tackles the inflammation.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Tuesday, April 14, 2009 6:03:59 PMSubject: Re: Hi everyone.... I'm new to the group and I have a question!Hi Jay, My feelings on prednisone is so well known on this board.. not much good to say EXCEPT it is the best for infections.

It does give horrible side effects. I suffered them all so I am sure you will hear from others. I also have IPF DX in 2004

Prednisone does nothing for IPF.... that we all know to be true. I have however been on a quick 5 day round if I get a nasty cold or something. But NO i would never go on it again..

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."

How does everyone feel about Prednisone? My Doctors are all so wishy-washy when it comes to the subject. One say "You should be on it". One says "it's side effects outweigh it's benefits" and yet a 3rd says "If you read up on it it says it has no help for IPF". It all gets very confusing! Since last week I've been sitting here with a prescription for it and I just can't decide... take it or no. Then I end out in emergency with fluid building up and pain in my side. They put me on a short course of Prednisone. LOL I am diabetic but so far the highest my sugar has been is 185, and that is controllable I think, so it's not really beating me up in that direction but still.... I'm at that take it or no point.Anyway, just thought I'd ask.

I know we're not all Doctors here but I'd say many of us are Smee's (subject matter experts), and sometimes another voice is a nice thing.I'd better check on my wife. She's in the kitchen making a home made Hummingbird cake for my Mom's 83rd birthday. Thanks,JayIPF 11/08The spirit of a man will sustain his infirmity; but a wounded spirit who can bear? ~Proverbs 18:14

[Guest guest]

Jay, Welcome to the "air family".

On the subject of Prednisone....boy do you have loads to read!!!!

There are as many opinions here as there are members!!!!. Look through

the databases linked at the bottom of the messages.

We have listed pros and cons and side effects. Read all you can about

the drug...

I've personally been one of a few here who have been stable because of

Prednisone...but I have one of 200 forms of the disease

NSIP (fibriotic) that happens to sometimes respond positively to

prednisone. I do not have IPF.

Again...welcome.

Z fibriotic NSIP/05

Z 65, fibriotic NSIP/05/PA

And

“mild” PH/10/07 and Reynaud’s too!!

No,

NSIP was not self-inflicted…I never smoked!

Potter,

reader,carousel lover and MomMom to Darah and Sara

“I’m

gonna be iron like a lion in Zion” Bob Marley

Vinca

Minor-periwinkle is my flower

senseichef@... wrote:

How does everyone feel about Prednisone? My Doctors are all so

wishy-washy when it comes to the subject. One say "You should be on

it". One says "it's side effects outweigh it's benefits" and yet a 3rd

says "If you read up on it it says it has no help for IPF". It all gets

very confusing!

Since last week I've been sitting here with a prescription for it and I

just can't decide... take it or no. Then I end out in emergency with

fluid building up and pain in my side. They put me on a short course of

Prednisone. LOL I am diabetic but so far the highest my sugar has been

is 185, and that is controllable I think, so it's not really beating me

up in that direction but still.... I'm at that take it or no point.

Anyway, just thought I'd ask. I know we're not all Doctors here but I'd

say many of us are Smee's (subject matter experts), and sometimes

another voice is a nice thing.

I'd better check on my wife. She's in the kitchen making a home made

Hummingbird cake for my Mom's 83rd birthday.

Thanks,

Jay

IPF 11/08

The spirit of a man will sustain his infirmity; but a wounded spirit

who can bear? ~Proverbs 18:14

[Guest guest]

Jay, Welcome to the "air family".

On the subject of Prednisone....boy do you have loads to read!!!!

There are as many opinions here as there are members!!!!. Look through

the databases linked at the bottom of the messages.

We have listed pros and cons and side effects. Read all you can about

the drug...

I've personally been one of a few here who have been stable because of

Prednisone...but I have one of 200 forms of the disease

NSIP (fibriotic) that happens to sometimes respond positively to

prednisone. I do not have IPF.

Again...welcome.

Z fibriotic NSIP/05

Z 65, fibriotic NSIP/05/PA

And

“mild” PH/10/07 and Reynaud’s too!!

No,

NSIP was not self-inflicted…I never smoked!

Potter,

reader,carousel lover and MomMom to Darah and Sara

“I’m

gonna be iron like a lion in Zion” Bob Marley

Vinca

Minor-periwinkle is my flower

senseichef@... wrote:

How does everyone feel about Prednisone? My Doctors are all so

wishy-washy when it comes to the subject. One say "You should be on

it". One says "it's side effects outweigh it's benefits" and yet a 3rd

says "If you read up on it it says it has no help for IPF". It all gets

very confusing!

Since last week I've been sitting here with a prescription for it and I

just can't decide... take it or no. Then I end out in emergency with

fluid building up and pain in my side. They put me on a short course of

Prednisone. LOL I am diabetic but so far the highest my sugar has been

is 185, and that is controllable I think, so it's not really beating me

up in that direction but still.... I'm at that take it or no point.

Anyway, just thought I'd ask. I know we're not all Doctors here but I'd

say many of us are Smee's (subject matter experts), and sometimes

another voice is a nice thing.

I'd better check on my wife. She's in the kitchen making a home made

Hummingbird cake for my Mom's 83rd birthday.

Thanks,

Jay

IPF 11/08

The spirit of a man will sustain his infirmity; but a wounded spirit

who can bear? ~Proverbs 18:14

[Guest guest]

Jay, Welcome to the group!

To take Prednisone or not take Prednisone? That is a great question. You are

very much on the right path by joining this support group, asking questions and

educating yourself.

I love the old saying " knowledge is power. " It is very truthful when applied to

IPF. Continue to read about the side effects and learn as much as you can. Being

you already have Diabetes I would suggest reading even more about ways to keep

it under control while on Prednisone as Diabetes itself has many side effects.

I was on Prednisone for about 6 months before weaning off. It was not helpful to

my particular situation. I experienced many of the bad side effect and my

disease actually progressed during those months. However, after researching and

struggling with IPF for so long I felt I owed it to myself to at least try it.

Although it took a toll on me I do not regret my decision to try it.

Remember just like you have the option to try it you also have the option to

wean off it if you choose. You are in control!

33 FL

IPF 1/06

>

> Hi Jay,

> Welcome to Breathe Support! I'm sorry you had reason to look for a group like

this but since you did I'm glad you found us.

>

> You have opened the proverbial Pandora's box by asking the dreaded prednisone

question. You will get every kind of opinion here that you can imagine and the

bottom line is you have to weigh all the information and decide whether it's

something that makes sense for you to try.

> In general prednisone is said not to do much of anything for IPF/UIP patients.

But even that truth has it's limitations as there are some folks with IPF that

have been helped by a course of prednisone. My opinion (for what that's worth

LOL) is that it depends very much on how much inflammation you have going on.

Those with more inflammation are often helped by prednisone's powerful

anti-inflammatory action. People with an underlying autoimmune condition are

often helped by prednisone.

> Back in 2006 when I was diagnosed with NSIP I was on high doses of prednisone

(up to 100mg) for several months. I had many side effects but my physician was

pro-active in helping me manage them. I've been off prednisone completely for a

bit over 2 years and have remained stable but I would take it again if I had to

since I know it helps me.

> Again, this is a decision that only you can make. Since you are already a

diabetic you would want to be extremely vigilant about your blood sugar levels

on prednisone. Unstable blood sugar is something that happens to me pretty much

instantly on doses of prednisone over 20mg. Under 20 that side effect disappears

for me.

>

> You'll get lots of opinions here, take it all in and then decide what's best

for you!

>

> Beth

> Moderator

> Fibrotic NSIP 06/06 Dermatomyositis 11/08

>

>

>

>

> ________________________________

> From: " senseichef@... "

> To: Breathe-Support

> Sent: Tuesday, April 14, 2009 5:21:57 PM

> Subject: Hi everyone.... I'm new to the group and I have a

question!

>

>

>

>

>

> How does everyone feel about Prednisone? My Doctors are all so wishy-washy

when it comes to the subject. One say " You should be on it " . One says " it's side

effects outweigh it's benefits " and yet a 3rd says " If you read up on it it says

it has no help for IPF " . It all gets very confusing!

>

> Since last week I've been sitting here with a prescription for it and I just

can't decide... take it or no. Then I end out in emergency with fluid building

up and pain in my side. They put me on a short course of Prednisone. LOL I am

diabetic but so far the highest my sugar has been is 185, and that is

controllable I think, so it's not really beating me up in that direction but

still.... I'm at that take it or no point.

>

> Anyway, just thought I'd ask. I know we're not all Doctors here but I'd say

many of us are Smee's (subject matter experts), and sometimes another voice is a

nice thing.

>

> I'd better check on my wife. She's in the kitchen making a home made

Hummingbird cake for my Mom's 83rd birthday.

>

> Thanks,

>

> Jay

>

> IPF 11/08

>

>

> The spirit of a man will sustain his infirmity; but a wounded spirit who can

bear?  ~Proverbs 18:14

>

[Guest guest]

Welcome to the Board Jay... sorry you find yourself needing to ...about the prednisone issue ... may I suggest you go the the Web site Message Board & put Prednisone in the Subject Search field at the top of the page. You'll see a huga amount of action on this topic.

It does so much depend on the what type of PF you have & if there is a known underlying cause. Of Course it also depends on what conditions you have as well, that might be negatively affected by taking these high dose steroids... Diabetes is one such problem area. Prednisone is know to make existing Diabetes harder to control in SOME patients & causes SOME others to develop Diabetes where they were free of it previously.

Only you can decide.....it's a slippery slope!

Good luck with that tough one!

in Oz (Australia)

IPF: Fibrotic NSIP/UIP???

Raynaud's

May 2007

Ro52

May 2008

>> How does everyone feel about Prednisone? My Doctors are all so> wishy-washy when it comes to the subject. One say "You should be on it".> One says "it's side effects outweigh it's benefits" and yet a 3rd says> "If you read up on it it says it has no help for IPF". It all gets very> confusing!> > Since last week I've been sitting here with a prescription for it and I> just can't decide... take it or no. Then I end out in emergency with> fluid building up and pain in my side. They put me on a short course of> Prednisone. LOL I am diabetic but so far the highest my sugar has been> is 185, and that is controllable I think, so it's not really beating me> up in that direction but still.... I'm at that take it or no point.> > Anyway, just thought I'd ask. I know we're not all Doctors here but I'd> say many of us are Smee's (subject matter experts), and sometimes> another voice is a nice thing.> > I'd better check on my wife. She's in the kitchen making a home made> Hummingbird cake for my Mom's 83rd birthday.> > Thanks,> > Jay> > IPF 11/08> > > The spirit of a man will sustain his infirmity; but a wounded spirit who> can bear? ~Proverbs 18:14>

[Guest guest]

Welcome Jay....I haven't been doing real well lately so we'll get acquainted as we go along.

Welcome

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

Hi everyone.... I'm new to the group and I have a question!

How does everyone feel about Prednisone? My Doctors are all so wishy-washy when it comes to the subject. One say "You should be on it". One says "it's side effects outweigh it's benefits" and yet a 3rd says "If you read up on it it says it has no help for IPF". It all gets very confusing! Since last week I've been sitting here with a prescription for it and I just can't decide... take it or no. Then I end out in emergency with fluid building up and pain in my side. They put me on a short course of Prednisone. LOL I am diabetic but so far the highest my sugar has been is 185, and that is controllable I think, so it's not really beating me up in that direction but still.... I'm at that take it or no point.Anyway, just thought I'd ask. I know we're not all Doctors here but I'd say many of us are Smee's (subject matter experts), and sometimes another voice is a nice thing.I'd better check on my wife. She's in the kitchen making a home made Hummingbird cake for my Mom's 83rd birthday. Thanks,JayIPF 11/08The spirit of a man will sustain his infirmity; but a wounded spirit who can bear? ~Proverbs 18:14

[Guest guest]

Welcome Jay....I haven't been doing real well lately so we'll get acquainted as we go along.

Welcome

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

Hi everyone.... I'm new to the group and I have a question!

How does everyone feel about Prednisone? My Doctors are all so wishy-washy when it comes to the subject. One say "You should be on it". One says "it's side effects outweigh it's benefits" and yet a 3rd says "If you read up on it it says it has no help for IPF". It all gets very confusing! Since last week I've been sitting here with a prescription for it and I just can't decide... take it or no. Then I end out in emergency with fluid building up and pain in my side. They put me on a short course of Prednisone. LOL I am diabetic but so far the highest my sugar has been is 185, and that is controllable I think, so it's not really beating me up in that direction but still.... I'm at that take it or no point.Anyway, just thought I'd ask. I know we're not all Doctors here but I'd say many of us are Smee's (subject matter experts), and sometimes another voice is a nice thing.I'd better check on my wife. She's in the kitchen making a home made Hummingbird cake for my Mom's 83rd birthday. Thanks,JayIPF 11/08The spirit of a man will sustain his infirmity; but a wounded spirit who can bear? ~Proverbs 18:14

[Guest guest]

Jay

G-d Bless Prednisone

my disease is responsive to prednisone and last week they put me on the inactive transplant list

i'm down to 15 mgs prednisone, but 2000 mgs cellcept

side effects are a pain, but you have to decide what is best for you

Pink Joyce IPF 3/06 Pennsylvania

Donate Life Listed 1/09 inactive 4/09

www.transplantfund.org---

Subject: Re: Hi everyone.... I'm new to the group and I have a question!To: Breathe-Support Date: Tuesday, April 14, 2009, 7:11 PM

Jay, Welcome to the "air family". On the subject of Prednisone.. ..boy do you have loads to read!!!!There are as many opinions here as there are members!!!!. Look through the databases linked at the bottom of the messages.We have listed pros and cons and side effects. Read all you can about the drug...I've personally been one of a few here who have been stable because of Prednisone.. .but I have one of 200 forms of the diseaseNSIP (fibriotic) that happens to sometimes respond positively to prednisone. I do not have IPF.Again...welcome.

Z 65, fibriotic NSIP/05/PA

And “mild†PH/10/07 and Reynaud’s too!!

No, NSIP was not self-inflicted…I never smoked!

Potter, reader,carousel lover and MomMom to Darah and Sara

“I’m gonna be iron like a lion in Zion†Bob Marley

Vinca Minor-periwinkle is my flower

senseichef@rocketma il.com wrote:

How does everyone feel about Prednisone? My Doctors are all so wishy-washy when it comes to the subject. One say "You should be on it". One says "it's side effects outweigh it's benefits" and yet a 3rd says "If you read up on it it says it has no help for IPF". It all gets very confusing! Since last week I've been sitting here with a prescription for it and I just can't decide... take it or no. Then I end out in emergency with fluid building up and pain in my side. They put me on a short course of Prednisone. LOL I am diabetic but so far the highest my sugar has been is 185, and that is controllable I think, so it's not really beating me up in that direction but still.... I'm at that take it or no point.Anyway, just thought I'd ask. I know we're not all Doctors here but I'd say many of us are Smee's (subject matter experts), and sometimes another voice is a nice thing.I'd better check on my wife. She's in the kitchen making a

home made Hummingbird cake for my Mom's 83rd birthday. Thanks,JayIPF 11/08The spirit of a man will sustain his infirmity; but a wounded spirit who can bear? ~Proverbs 18:14