Re: K--prednisone discussion

May 29, 2008

Thanks MB, You did not butt in here. I need to understand what is going on. at the U of C said, from the get go, that the docs up there do NOT think that prednisone helps or cures pf. I do understand that prednisone works for some stuff and not all. I know that was upbeat about the fact this is ai and I understand that too. Thanks for your straight talk MB. I just need someone to talk to me about what is happening here. After Jim's post to Irene he took the Welbutin. I feel like I've been through a war here. (I guess I am lol) K Central Il Hubby ipf- 2006 As for me and my house, we will serve the Lord 14

May 29, 2008

My two-cents worth. Concerning the discussion of the perils or benefits of prednisone. I can speak for myself and myself only. It has been my experience that cortisteriod has helped me in my battle with the horrid monster. To be quite honest, I believe whole-heartedly that this little pill saved my life. I hate and despise the side effects that steriods have on those of us who take it, but again, for me it has been a life saver. For all who read this missive and are in this battle. God be with us, give us strength and the ability to shine as beacons to those around us. Wally (just stickin' my nose in), NSIP 10/06 west Texas Beth wrote: , Forgive me for butting in here again but it's really impossible to take someone elses reasons for not taking prednisone and try to apply them to your own situation. Peggy has IPF and the research that I've seen pretty clearly shows that prednisone does nothing to slow the progress of IPF. From what you've said my impression is that Don's fibrosis is secondary to some type of autoimmune disease or combination of ai diseases. These are commonly treated with prednisone and other immunosuppressive drugs and that treatment has been shown to slow the progress of lung fibrosis as it slows the progress of the ai disease. There are likely

good reasons for Don to be on prednisone and or other drugs to treat what the doctors think he has. Going to U of C is a really good and necessary step. Of course getting Don to do what they suggest may be another battle entirely. I'm glad that you're finding support and that your boys are helping and supporting you. You have your hands full there girl! Beth Age 48 Fibrotic NSIP 06/06 Change everything. Love and

Forgive Re: Re: [breathe-Support Peggy But does it help the the sjourn auto immune? I really butchered that spelling. K IllinoisPeggy <pac1773cfl (DOT) rr.com> wrote: I was on prednisone for a year. gained 70 pounds in 8 weeks. Sweet tooth I'm sure. Haven't lost it yet. Haven't stopped the cakes and anything else. When I made the decision not to try for a transplant I just thought I might as well be fat & happy. I have a good life and would nor go on prednisone again.. It does not help IPF what so ever. Peggy, ipf 6/04 Florida Happy moments, praise God.Difficult moments, seek God.Quiet moments, worship God.Painful moments, trust God.Every

moment, thank God. I have a question for you Peggy. Didn't you tell me that you are not on prednisone? I vaguely remember that there are a few that have refused it. K Central Il Hubby ipf- 2006 As for me and my house, we will serve the Lord 14 K Central Il Hubby ipf- 2006 As for me and my house, we will serve the Lord 14

May 29, 2008

My experience with Prednisone....and when I think I wouldn't be taking anymore, it pops up...

I'm not suppose to be taking Prednisone because in the first years, I started taking it, I developped

something called Osteopenia (it weakens your bones)...I've had several fractures, broken, wrists,

broken toes, been on crutches and casts.

At the same time, most of the time it can't be avoided because of the inflammation that are going through

my body....the usual dose starting dose is 60mg decrease by 5mg per week. In the beginning once I reached

20mg, I would start flaring and they would increase it back to 60mg.

This time around, I noticed at the hospital Pred below 35mg, I would start flaring....

Also what they did at the hospital, what cut the dosages of my meds in half (so I would receive them in the morning

at night before I went to bed).

What I hate about Pred, is the gain weight (alredy lost so much) the moon face, mood swings, sleepless nights etc...

On a funny note, I have this military style pants, before it didn't fit me that well...the other day I wore it to go outside

and a put belt, by the time I got home the pants had fallen until the bikini line

today because I'm going out, I decided to wear in the appartment without the belt to see what it's going to do, the phone

rang I got up and it has fallen until my thigh....

Irene

PF 03/07 Raynaud's Disease 09/07

Crohn's Disease 03/95

Canada

---- Original Message ----

To: Breathe-Support

Sent: Thu, 29 May 2008 11:57 am

Subject: Re: K--prednisone discussion

My two-cents worth.

Concerning the discussion of the perils or benefits of prednisone. I can speak for myself and myself only. It has been my experience that cortisteriod has helped me in my battle with the horrid monster. To be quite honest, I believe whole-heartedly that this little pill saved my life. I hate and despise the side effects that steriods have on those of us who take it, but again, for me it has been a life saver. For all who read this missive and are in this battle. God be with us, give us strength and the ability to shine as beacons to those around us.

Wally (just stickin' my nose in), NSIP 10/06

west Texas

Beth <mbmurtha> wrote:

,

Forgive me for butting in here again but it's really impossible to take someone elses reasons for not taking prednisone and try to apply them to your own situation. Peggy has IPF and the research that I've seen pretty clearly shows that prednisone does nothing to slow the progress of IPF.

From what you've said my impression is that Don's fibrosis is secondary to some type of autoimmune disease or combination of ai diseases. These are commonly treated with prednisone and other immunosuppressive drugs and that treatment has been shown to slow the progress of lung fibrosis as it slows the progress of the ai disease. There are likely good reasons for Don to be on prednisone and or other drugs to treat what the doctors think he has. Going to U of C is a really good and necessary step. Of course getting Don to do what they suggest may be another battle entirely.

I'm glad that you're finding support and that your boys are helping and supporting you. You have your hands full there girl!

Beth

Age 48 Fibrotic NSIP 06/06

Change everything. Love and Forgive

Re: Re: [breathe-Support Peggy

But does it help the the sjourn auto immune?

I really butchered that spelling.

K

Illinois

Peggy <pac1773cfl (DOT) rr.com> wrote:

I was on prednisone for a year. gained 70 pounds in 8 weeks. Sweet tooth I'm sure. Haven't lost it yet. Haven't stopped the cakes and anything else. When I made the decision not to try for a transplant I just thought I might as well be fat & happy. I have a good life and would nor go on prednisone again..

It does not help IPF what so ever.

Peggy, ipf 6/04 Florida

Happy moments, praise God.

Difficult moments, seek God.

Quiet moments, worship God.

Painful moments, trust God.

Every moment, thank God.

I have a question for you Peggy. Didn't you tell me that you are not on prednisone? I vaguely remember that there are a few that have refused it.

K

Central Il

Hubby ipf- 2006

As for me and my house, we will serve the Lord

14

K

Central Il

Hubby ipf- 2006

As for me and my house, we will serve the Lord

14

Meet the new AOL.ca. Free radio, music, videos, news & entertainment – with a Canadian perspective.

May 29, 2008

Wally,

I'm joining in with you! I firmly believe that the iv steroid (solumedrol) I had 2 years ago when I was in the hospital saved my life. And the oral prednisone I took for several months afterwards continued the process of stablizing my disease. I was fortunate in that my side effects, while I had them, were moderate and aggressively managed by my doctor at the time.

I've said it before and I'll say it again I've taken prednisone in high doses (up to 100mg daily) and I'd do it again if/when I begin to deteriorate. Everyone is different. Some people have side effects that are much much more severe than I suffered. I would not begin to tell someone what to do. You have to gather information and then decide what is best for you, what you can live with and what you can tolerate. There will not be one answer for everyone!

Beth

Age 48 Fibrotic NSIP 06/06

Change everything. Love and Forgive

Re: Re: [breathe-Support Peggy

But does it help the the sjourn auto immune?

I really butchered that spelling.

K

IllinoisPeggy <pac1773cfl (DOT) rr.com> wrote:

I was on prednisone for a year. gained 70 pounds in 8 weeks. Sweet tooth I'm sure. Haven't lost it yet. Haven't stopped the cakes and anything else. When I made the decision not to try for a transplant I just thought I might as well be fat & happy. I have a good life and would nor go on prednisone again..

It does not help IPF what so ever.

Peggy, ipf 6/04 Florida

Happy moments, praise God.Difficult moments, seek God.Quiet moments, worship God.Painful moments, trust God.Every moment, thank God.

I have a question for you Peggy. Didn't you tell me that you are not on prednisone? I vaguely remember that there are a few that have refused it.

K

Central Il

Hubby ipf- 2006

As for me and my house, we will serve the Lord

14

K

Central Il

Hubby ipf- 2006

As for me and my house, we will serve the Lord

14

May 29, 2008

OK, there is no "sticking your nose in" on this board. I appreciate each and every response there has been. God love you all. I've read Don most and will read more to him. I've told him, what ever HE decides on the prednisone issue will be my battle cry. However, I am adamant on this depression stuff. We have to manage that and I don't care how many meds he has to take. He listened to what Babs had to say and I'll read to him what Wally said. He is the one who is living this not me. I wish I could get him to at least check this himself and read them. However, I probably take the hard line easier than he would. I was struggling last night, I just want him for the time he has left. What ever we can do to make the time productive. Thanks all. K Illinois Beth

wrote: Wally, I'm joining in with you! I firmly believe that the iv steroid (solumedrol) I had 2 years ago when I was in the hospital saved my life. And the oral prednisone I took for several months afterwards continued the process of stablizing my disease. I was fortunate in that my side effects, while I had them, were moderate and aggressively managed by my doctor at the time. I've said it

before and I'll say it again I've taken prednisone in high doses (up to 100mg daily) and I'd do it again if/when I begin to deteriorate. Everyone is different. Some people have side effects that are much much more severe than I suffered. I would not begin to tell someone what to do. You have to gather information and then decide what is best for you, what you can live with and what you can tolerate. There will not be one answer for everyone! Beth Age 48 Fibrotic NSIP 06/06 Change everything. Love and Forgive Re: Re: [breathe-Support Peggy But does it help the the sjourn auto immune? I really butchered that spelling. K IllinoisPeggy <pac1773cfl (DOT) rr.com> wrote: I was on prednisone for a year. gained 70 pounds in 8 weeks. Sweet tooth I'm sure. Haven't lost it yet. Haven't stopped the cakes and anything else. When I made the decision not to try for a transplant I just thought I might as well be fat & happy. I have a good life and would nor go on prednisone again.. It does not help IPF what so ever. Peggy, ipf 6/04 Florida Happy moments, praise God.Difficult moments, seek God.Quiet moments, worship God.Painful moments, trust God.Every moment, thank God. On May 29, 2008, at 10:13 AM, Kennelly

wrote: I have a question for you Peggy. Didn't you tell me that you are not on prednisone? I vaguely remember that there are a few that have refused it. K Central Il Hubby ipf- 2006 As for me and my house, we will serve the Lord

14 K Central Il Hubby ipf- 2006 As for me and my house, we will serve the Lord 14 K Central Il Hubby ipf- 2006 As for me and my house, we will serve the Lord 14

May 29, 2008

Butting in also. I beleive prednisone has helped My IPF plateau. Along with other drugs. Maybe there is a male/female steroid thing going on? Also only speaking for myself.Steve 60 from WA IPF 2006 Parkinsons 2008

Alzheimers 2008

Reply-To: Breathe-Support To: Breathe-Support Subject: Re: K--prednisone discussionDate: Thu, 29 May 2008 09:57:01 -0700 (PDT)

My two-cents worth.

Concerning the discussion of the perils or benefits of prednisone. I can speak for myself and myself only. It has been my experience that cortisteriod has helped me in my battle with the horrid monster. To be quite honest, I believe whole-heartedly that this little pill saved my life. I hate and despise the side effects that steriods have on those of us who take it, but again, for me it has been a life saver. For all who read this missive and are in this battle. God be with us, give us strength and the ability to shine as beacons to those around us.

Wally (just stickin' my nose in), NSIP 10/06

west Texas

Beth <mbmurtha> wrote:

,

Forgive me for butting in here again but it's really impossible to take someone elses reasons for not taking prednisone and try to apply them to your own situation. Peggy has IPF and the research that I've seen pretty clearly shows that prednisone does nothing to slow the progress of IPF.

From what you've said my impression is that Don's fibrosis is secondary to some type of autoimmune disease or combination of ai diseases. These are commonly treated with prednisone and other immunosuppressive drugs and that treatment has been shown to slow the progress of lung fibrosis as it slows the progress of the ai disease. There are likely good reasons for Don to be on prednisone and or other drugs to treat what the doctors think he has. Going to U of C is a really good and necessary step. Of course getting Don to do what they suggest may be another battle entirely.

I'm glad that you're finding support and that your boys are helping and supporting you. You have your hands full there girl!

Beth

Age 48 Fibrotic NSIP 06/06

Change everything. Love and Forgive

Re: Re: [breathe-Support Peggy

But does it help the the sjourn auto immune?

I really butchered that spelling.

K

IllinoisPeggy <pac1773cfl (DOT) rr.com> wrote:

I was on prednisone for a year. gained 70 pounds in 8 weeks. Sweet tooth I'm sure. Haven't lost it yet.

Haven't stopped the cakes and anything else. When I made the decision not to try for a transplant I just thought I might as well be fat & happy. I have a good life and would nor go on prednisone again..

It does not help IPF what so ever.

Peggy, ipf 6/04 Florida

Happy moments, praise God.Difficult moments, seek God.Quiet moments, worship God.Painful moments, trust God.Every moment, thank God.

I have a question for you Peggy. Didn't you tell me that you are not on prednisone? I vaguely remember that there are a few that have refused it.

K

Central Il

Hubby ipf- 2006

As for me and my house, we will serve the Lord

14

K

Central Il

Hubby ipf- 2006

As for me and my house, we will serve the Lord

14

May 30, 2008

Dr. at Emory stated he feels Prednisone helps about 2% of patients but he said it is supposed to be as high as 20%. I am off and AT PRESENT feel better than I did when on them.

ï»¿ ï»¿ ï»¿ ï»¿ JOE/JOANIE JOE 60 IPF1/2008

GRIFFIN, GA.

-- Re: K--prednisone discussion

Thanks MB, You did not butt in here. I need to understand what is going on. at the U of C said, from the get go, that the docs up there do NOT think that prednisone helps or cures pf. I do understand that prednisone works for some stuff and not all. I know that was upbeat about the fact this is ai and I understand that too.

Thanks for your straight talk MB. I just need someone to talk to me about what is happening here. After Jim's post to Irene he took the Welbutin. I feel like I've been through a war here. (I guess I am lol)

K

Central Il

Hubby ipf- 2006

As for me and my house, we will serve the Lord

14

May 30, 2008

Here's another person " sticking their nose " in regarding the

Prednisone. Yes, it has saved my life, although I HATE the side

effects. I am now taking it in higher doses once again hoping for

a " remission " of sorts. I had pneumonia and am trying my best to

recover former functioning, to avoid a possible lung transplant.

I have autoimmune diseases also. I think Prednisone in combination

with Imuran/Cellcept does wonders for people with this diagnosis.

One question for the board. It seems that men react differently to

Prednisone than women, especially in the mood reaction. Men, I've

seem to find, more often get anger issues. Afterall, it is a hormone.

Also, since I am TEN years out now from diagnosis (NSIP with Open

Lung Biopsy 11 '98), I think the combination of Imuran/Prednisone (in

varying dosages when necessary) have prolonged my life considerably.

Sherry , Age 64

NSIP '98

>

> I have a question for you Peggy. Didn't you tell me that you are

not on prednisone? I vaguely remember that there are a few that have

refused it.

>

> K

> Central Il

> Hubby ipf- 2006

> As for me and my house, we will serve the Lord

> 14

>

> K

> Central Il

> Hubby ipf- 2006

> As for me and my house, we will serve the Lord

> 14

>

> K

> Central Il

> Hubby ipf- 2006

> As for me and my house, we will serve the Lord

> 14

>

May 30, 2008

Sherry, Thanks for posting. I also have

NSIP and am taking Prednisone and Imuran plus many others.

I have been stable since starting these meds in 2005 and am very

grateful to be stable!

I agree thqat for our form of PF these drugs may be life saving. I have

no auto-immune issues.

I was pleased to see that you were DX in '98...ten years!!!

That gives me geat incentive!

Have a great week-end

..

Z fibriotic NSIP/05

Z 64,

fibriotic NSIP/o5/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

sherryjohnson16 wrote:

Here's another person "sticking their nose" in regarding the

Prednisone. Yes, it has saved my life, although I HATE the side

effects. I am now taking it in higher doses once again hoping for

a "remission" of sorts. I had pneumonia and am trying my best to