Prednisone

[Guest guest]

In a message dated 9/12/2003 9:28:34 AM Eastern Daylight Time,

Graduate-OSSG writes:

> Has anyone taken Prednisone since wls and if so, for how long, dose and

> side effects if any from it?

>

>

Regina

I know somebody on one of my other lists who is taking long-term (for several

months now) high dose Prednisone for autoimmune hepatitis. She seems to be

doing fine on it. If you'd like, I can email her with your email address and

ask her to get in touch with you.

Sandy

Boca Raton, FL

postop ~ 03/27/02

265/125

[Guest guest]

Bruce,

Thanks for your email. I used the IPF term meaning interstitial pulmonary fibrosis. While the med is a probable cause, idiopathic cannot be ruled out completely.

I do not know the meaning of UIP.

I was disagnosed in my home town but have been to NJH for evaluation. As yet, my pulmonologist at home has not begun any treatment. NJH has recommended prednisone. There has been no progression since diagnosis in June.

To: Breathe-Support Sent: Sunday, October 4, 2009 10:23:04 PMSubject: Re: prednisone

BettyIts a much more complicated question that that. Plenty of people withforms of PF other than UIP have good luck with Prednisone. Now when itcomes to UIP it is generally not considered to be effective long termeven though it is sometimes short term. However, there are wellrespected doctors who recommend it any way. But you need to find outmore information directly applicable to your situation.I'm assuming you have UIP because you used the term, IPF. If they know amed caused it, then its technically not IPF because its no longerIdiopathic. But from an appearance and damage stand point its the same.However, if the cause is known then many of the rules may change. Or itmay just be they think the med but truly don't know. I'm not sure what20-30% involvement means or how your condition has been progressing. Butif by 20-30% involvement, you're saying your capacity is still 70-80%then thats

quite good.I don't know how you were diagnosed or where but I do recommend a Centerof Excellence for a second opinion if you haven't had one. They can alsogive you another well qualified opinion on treatment. Meanwhile readmore, get various opinions and you'll be better able to answer by whatis best for you.>> Has anyone had satisfactory results from taking prednisone? I have IPFprobably caused by a medication. My lungs have 20-30% involvement at thepresent time. I am not on oxygen but will be soon I think.>

[Guest guest]

Beth,

thanks for the info. I know that this is my decision which is why I am trying to become more educated on the Prednisone issue. It helps to hear the responses.

The drug is Nitrofurontoin (macrobid). I took it for years as a suppression drug for bladder infections.

BSK

To: Breathe-Support Sent: Sunday, October 4, 2009 9:24:53 PMSubject: Re: prednisone

Welcome Bettye,

I can't answer your question On Prednisone 'cos I've refused to take it! Beth has given you good advice....you' ll get all sorts of personal opinion from us but in the end YOU have to decide whether to give it a go or not! You must weigh up the Risks/ Benefits for YOU!

Keep us posted & tell us more about yourself & your situation.

in Australia

>> Hi Bettye and welcome to Breathe Support! My name is Beth and I am the moderator of this board. I hope that together we can help you find the information that you need. > > The question of prednisone is a loaded one. That particular drug inspires alot of discussion and debate among people with pulmonary fibrosis.> Whether or not prednisone will help you in any way is not something that anyone here can answer. I have a form of pulmonary fibrosis called fibrotic nsip. In general pred is not likely to be effective against fibrotic nsip. However it saved my life and stablized my disease over 3 years ago. It's very difficult if not impossible to know for sure in advance whether prednisone will be

effective. If there is substantial inflammation or alveolitis associated with your fibrosis there is a good chance that prednisone will help but it's impossible to know for sure. > > If you don't mind my asking what is the drug that damaged your lungs?> > > Beth> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08> > > > > > > ____________ _________ _________ __> From: bettyekline24 bettyekline24@ ...> To: Breathe-Support@ yahoogroups. com> Sent: Sun, October 4, 2009 8:44:09 PM> Subject: prednisone> > > Has anyone had satisfactory results from taking prednisone? I have IPF probably caused by a medication. My lungs have 20-30% involvement at the present time. I am not on oxygen but will be soon I think.>

[Guest guest]

Bettye,

Ah yes Macrobid. Unfortunately the situation you're in is a well known if rare complication of long term treatment with Macrobid. It's a very strong drug and safe for most people. I'm sorry this happened to you.

The fact that you've been evaluated at National Jewish is great. They are among the best. If they are recommending treatment with prednisone I'd be inclined to give it very serious consideration. It's unlikely they would suggest it unless they were seeing inflammation or something else that the prednisone would help.

There are many side effects that can come along with extended treatment with high doses of prednisone. I had lots of them (Type 2 diabetes, mood swings, yeast infections, increased intraocular pressure, swelling, insomnia, thinning of the skin and bruising easily). I also had a doctor who aggressively helped me manage them. All of the side effects resolved on their own once I had weaned down to a lower dose and disappeared completely once I was off the prednisone for a couple of months.

You're doing the right thing by gathering as much information as possible. I hope that you find the information that you are looking for!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Mon, October 5, 2009 10:47:11 AMSubject: Re: Re: prednisone

Beth,

thanks for the info. I know that this is my decision which is why I am trying to become more educated on the Prednisone issue. It helps to hear the responses.

The drug is Nitrofurontoin (macrobid). I took it for years as a suppression drug for bladder infections.

BSK

From: grangi49 <gina.francis3@ bigpond.com>To: Breathe-Support@ yahoogroups. comSent: Sunday, October 4, 2009 9:24:53 PMSubject: Re: prednisone

Welcome Bettye,

I can't answer your question On Prednisone 'cos I've refused to take it! Beth has given you good advice....you' ll get all sorts of personal opinion from us but in the end YOU have to decide whether to give it a go or not! You must weigh up the Risks/ Benefits for YOU!

Keep us posted & tell us more about yourself & your situation.

in Australia

>> Hi Bettye and welcome to Breathe Support! My name is Beth and I am the moderator of this board. I hope that together we can help you find the information that you need. > > The question of prednisone is a loaded one. That particular drug inspires alot of discussion and debate among people with pulmonary fibrosis.> Whether or not prednisone will help you in any way is not something that anyone here can answer. I have a form of pulmonary fibrosis called fibrotic nsip. In general pred is not likely to be effective against fibrotic nsip. However it saved my life and stablized my disease over 3 years ago. It's very difficult if not impossible to know for sure in advance whether prednisone will

be effective. If there is substantial inflammation or alveolitis associated with your fibrosis there is a good chance that prednisone will help but it's impossible to know for sure. > > If you don't mind my asking what is the drug that damaged your lungs?> > > Beth> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08> > > > > > > ____________ _________ _________ __> From: bettyekline24 bettyekline24@ ...> To: Breathe-Support@ yahoogroups. com> Sent: Sun, October 4, 2009 8:44:09 PM> Subject: prednisone> > > Has anyone had satisfactory results from taking prednisone? I have IPF probably caused by a medication. My lungs have 20-30% involvement at the present time. I am not on oxygen but will be soon I

think.>

[Guest guest]

Betty

UIP is Usual Interstitial Pneumonitis. If it is idiopathic then its IPF.

But the various forms of PF distinguish themselves pathologically and I

would imagine NJH would have indicated which form they feel you have and

why. The treatments and prognosis do vary by form and even within forms

by cause and by amount of alveolitis.

For instance, I have UIP/IPF without alveolitis so in the least likely

of all areas to be helped by Prednisone. However, were it to be

determined that I had an underlying connective tissue disease then that

might change the picture.

> >

> > Has anyone had satisfactory results from taking prednisone? I have

IPF

> probably caused by a medication. My lungs have 20-30% involvement at

the

> present time. I am not on oxygen but will be soon I think.

> >

>

[Guest guest]

,

Macrobid is in general a goos safe drug. This particular complication occurs very rarely and only when someone is on long term prophylactic treatment with Macrobid to prevent further UTI's. Short term intermittant use of this med is not implicated in this complication.

Here is the manufacturers warning:

Pulmonary reactions

ACUTE, SUBACUTE, OR CHRONIC PULMONARY REACTIONS HAVE BEEN OBSERVED IN PATIENTS TREATED WITH NITROFURANTOIN. IF THESE REACTIONS OCCUR, MACROBID SHOULD BE DISCONTINUED AND APPROPRIATE MEASURES TAKEN. REPORTS HAVE CITED PULMONARY REACTIONS AS A CONTRIBUTING CAUSE OF DEATH.

CHRONIC PULMONARY REACTIONS (DIFFUSE INTERSTITIAL PNEUMONITIS OR PULMONARY FIBROSIS, OR BOTH) CAN DEVELOP INSIDIOUSLY. THESE REACTIONS OCCUR RARELY AND GENERALLY IN PATIENTS RECEIVING THERAPY FOR SIX MONTHS OR LONGER. CLOSE MONITORING OF THE PULMONARY CONDITION OF PATIENTS RECEIVING LONG-TERM THERAPY IS WARRANTED AND REQUIRES THAT THE BENEFITS OF THERAPY BE WEIGHED AGAINST POTENTIAL RISKS.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Mon, October 5, 2009 2:36:07 PMSubject: Re: Re: prednisone

Betty, Do you really think that Macrobid could have caused the PF?Because of an allergy to sulfa drugs, when I get a UTI I have to take Macrcobid!Please tell me how you determined that it may be the cause!

Z 65, fibriotic NSIP/05/PA

And “mild†PH/10/07

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

Bettye Kline wrote:

Beth,

thanks for the info. I know that this is my decision which is why I am trying to become more educated on the Prednisone issue. It helps to hear the responses.

The drug is Nitrofurontoin (macrobid). I took it for years as a suppression drug for bladder infections.

BSK

From: grangi49 <gina.francis3@ bigpond.com>To: Breathe-Support@ yahoogroups. comSent: Sunday, October 4, 2009 9:24:53 PMSubject: Re: prednisone

Welcome Bettye,

I can't answer your question On Prednisone 'cos I've refused to take it! Beth has given you good advice....you' ll get all sorts of personal opinion from us but in the end YOU have to decide whether to give it a go or not! You must weigh up the Risks/ Benefits for YOU!

Keep us posted & tell us more about yourself & your situation.

in Australia

>> Hi Bettye and welcome to Breathe Support! My name is Beth and I am the moderator of this board. I hope that together we can help you find the information that you need. > > The question of prednisone is a loaded one. That particular drug inspires alot of discussion and debate among people with pulmonary fibrosis.> Whether or not prednisone will help you in any way is not something that anyone here can answer. I have a form of pulmonary fibrosis called fibrotic nsip. In general pred is not likely to be effective against fibrotic nsip. However it saved my life and stablized

my disease over 3 years ago. It's very difficult if not impossible to know for sure in advance whether prednisone will be effective. If there is substantial inflammation or alveolitis associated with your fibrosis there is a good chance that prednisone will help but it's impossible to know for sure. > > If you don't mind my asking what is the drug that damaged your lungs?> > > Beth> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08> > > > > > > ____________ _________ _________ __> From: bettyekline24 bettyekline24@ ...> To: Breathe-Support@ yahoogroups. com> Sent: Sun, October 4, 2009 8:44:09 PM> Subject: prednisone> > > Has anyone had satisfactory results from taking prednisone? I have IPF probably caused by a medication. My lungs have 20-30%

involvement at the present time. I am not on oxygen but will be soon I think.>

[Guest guest]

Oh and , that should say good drug, not goos drug. I'm clearly too tired to type.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Mon, October 5, 2009 5:53:16 PMSubject: Re: Re: prednisone

,

Macrobid is in general a goos safe drug. This particular complication occurs very rarely and only when someone is on long term prophylactic treatment with Macrobid to prevent further UTI's. Short term intermittant use of this med is not implicated in this complication.

Here is the manufacturers warning:

Pulmonary reactions

ACUTE, SUBACUTE, OR CHRONIC PULMONARY REACTIONS HAVE BEEN OBSERVED IN PATIENTS TREATED WITH NITROFURANTOIN. IF THESE REACTIONS OCCUR, MACROBID SHOULD BE DISCONTINUED AND APPROPRIATE MEASURES TAKEN. REPORTS HAVE CITED PULMONARY REACTIONS AS A CONTRIBUTING CAUSE OF DEATH.

CHRONIC PULMONARY REACTIONS (DIFFUSE INTERSTITIAL PNEUMONITIS OR PULMONARY FIBROSIS, OR BOTH) CAN DEVELOP INSIDIOUSLY. THESE REACTIONS OCCUR RARELY AND GENERALLY IN PATIENTS RECEIVING THERAPY FOR SIX MONTHS OR LONGER. CLOSE MONITORING OF THE PULMONARY CONDITION OF PATIENTS RECEIVING LONG-TERM THERAPY IS WARRANTED AND REQUIRES THAT THE BENEFITS OF THERAPY BE WEIGHED AGAINST POTENTIAL RISKS.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

From: Zion <ljz741 (AT) verizon (DOT) net>To: Breathe-Support@ yahoogroups. comSent: Mon, October 5, 2009 2:36:07 PMSubject: Re: Re: prednisone

Betty, Do you really think that Macrobid could have caused the PF?Because of an allergy to sulfa drugs, when I get a UTI I have to take Macrcobid!Please tell me how you determined that it may be the cause!

Z 65, fibriotic NSIP/05/PA

And “mild†PH/10/07

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

Bettye Kline wrote:

Beth,

thanks for the info. I know that this is my decision which is why I am trying to become more educated on the Prednisone issue. It helps to hear the responses.

The drug is Nitrofurontoin (macrobid). I took it for years as a suppression drug for bladder infections.

BSK

From: grangi49 <gina.francis3@ bigpond.com>To: Breathe-Support@ yahoogroups. comSent: Sunday, October 4, 2009 9:24:53 PMSubject: Re: prednisone

Welcome Bettye,

I can't answer your question On Prednisone 'cos I've refused to take it! Beth has given you good advice....you' ll get all sorts of personal opinion from us but in the end YOU have to decide whether to give it a go or not! You must weigh up the Risks/ Benefits for YOU!

Keep us posted & tell us more about yourself & your situation.

in Australia

>> Hi Bettye and welcome to Breathe Support! My name is Beth and I am the moderator of this board. I hope that together we can help you find the information that you need. > > The question of prednisone is a loaded one. That particular drug inspires alot of discussion and debate among people with pulmonary fibrosis.> Whether or not prednisone will help you in any way is not something that anyone here can answer. I have a form of pulmonary fibrosis called fibrotic nsip. In general pred is not likely to be effective against fibrotic nsip. However it saved my life and stablized

my disease over 3 years ago. It's very difficult if not impossible to know for sure in advance whether prednisone will be effective. If there is substantial inflammation or alveolitis associated with your fibrosis there is a good chance that prednisone will help but it's impossible to know for sure. > > If you don't mind my asking what is the drug that damaged your lungs?> > > Beth> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08> > > > > > > ____________ _________ _________ __> From: bettyekline24 bettyekline24@ ...> To: Breathe-Support@ yahoogroups. com> Sent: Sun, October 4, 2009 8:44:09 PM> Subject: prednisone> > > Has anyone had satisfactory results from taking prednisone? I have IPF probably caused by a medication. My lungs have 20-30%

involvement at the present time. I am not on oxygen but will be soon I think.>

[Guest guest]

Beth, Thanks for the info.When

I went on Medlineplus.gov..it did not state long

term use of Macrobid

as a causative situation.

Z fibriotic NSIP/05

Z 65, fibriotic NSIP/05/PA

And

“mild†PH/10/07

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 Zionâ€Â  Bob Marley

Vinca

Minor-periwinkle is my flower

 

 

Beth wrote:

 

,

Macrobid is in general a goos safe drug. This particular

complication occurs very rarely and only when someone is on long term

prophylactic treatment with Macrobid to prevent further UTI's. Short

term intermittant use of this med is not implicated in this

complication. 

Here is the manufacturers warning:

 

Pulmonary reactions

ACUTE, SUBACUTE, OR CHRONIC PULMONARY REACTIONS HAVE BEEN

OBSERVED IN PATIENTS TREATED WITH NITROFURANTOIN. IF THESE REACTIONS

OCCUR, MACROBID SHOULD BE DISCONTINUED AND APPROPRIATE MEASURES TAKEN.

REPORTS HAVE CITED PULMONARY REACTIONS AS A CONTRIBUTING CAUSE OF DEATH.

CHRONIC PULMONARY REACTIONS (DIFFUSE INTERSTITIAL PNEUMONITIS

OR PULMONARY FIBROSIS, OR BOTH) CAN DEVELOP INSIDIOUSLY. THESE

REACTIONS OCCUR RARELY AND GENERALLY IN PATIENTS RECEIVING THERAPY FOR

SIX MONTHS OR LONGER. CLOSE MONITORING OF THE PULMONARY CONDITION OF

PATIENTS RECEIVING LONG-TERM THERAPY IS WARRANTED AND REQUIRES THAT THE

BENEFITS OF THERAPY BE WEIGHED AGAINST POTENTIAL RISKS.

 

Beth

Moderator

Fibrotic

NSIP 06/06 Dermatomyositis 11/08

 

 

From:

Zion <ljz741 (AT) verizon (DOT) net>

To: Breathe-Support

Sent: Mon, October 5,

2009 2:36:07 PM

Subject: Re:

Re: prednisone

 

Betty, Do you really think

that Macrobid could have caused the PF?

Because of an allergy to sulfa drugs, when I get a UTI I have to take

Macrcobid!

Please tell me how you determined that it may be the cause!

Z 65, fibriotic NSIP/05/PA

And “mild†PH/10/07

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 Zionâ€Â  Bob Marley

Vinca Minor-periwinkle is my

flower

 

 

Bettye Kline wrote:

 

Beth,

thanks for the info. I know that this is my decision which is

why I am trying to become more educated on the Prednisone issue. It

helps to hear the responses.

The drug is Nitrofurontoin (macrobid). I took it for years as

a suppression drug for bladder infections.

BSK

From:

grangi49 <gina.francis3@ bigpond.com>

To: Breathe-Support@

yahoogroups. com

Sent: Sunday,

October 4, 2009 9:24:53 PM

Subject:

Re: prednisone

 

Welcome Bettye,

                      

I can't answer your question On Prednisone 'cos I've refused to take

it! Beth has given you good advice....you' ll get all sorts of

personal opinion from us but in the end YOU have to decide whether to

give it a go or not! You must weigh up the Risks/ Benefits for YOU!

                      

Keep us posted & tell us more about yourself & your situation.

                      

in Australia

 

             

>

> Hi Bettye and welcome to Breathe Support! My name is Beth and

I am the moderator of this board.  I hope that together we can help you

find the information that you need. 

>

> The question of prednisone is a loaded one. That particular drug

inspires alot of discussion and debate among people with pulmonary

fibrosis.

> Whether or not prednisone will help you in any way is not

something that anyone here can answer. I have a form of pulmonary

fibrosis called fibrotic nsip. In general pred is not likely to be

effective against fibrotic nsip. However it saved my life and stablized

my disease over 3 years ago. It's very difficult if not impossible to

know for sure in advance whether prednisone will be effective.  If

there is substantial inflammation or alveolitis associated with your

fibrosis there is a good chance that prednisone will help but it's

impossible to know for sure.

>

> If you don't mind my asking what is the drug that damaged your

lungs?

>

>

> Beth

> Moderator

> Fibrotic NSIP 06/06 Dermatomyositis 11/08

>  

>  

>

>

>

>

> ____________ _________ _________ __

> From: bettyekline24 bettyekline24@ ...

> To: Breathe-Support@ yahoogroups. com

> Sent: Sun, October 4, 2009 8:44:09 PM

> Subject: prednisone

>

>  

> Has anyone had satisfactory results from taking prednisone? I have

IPF probably caused by a medication. My lungs have 20-30% involvement

at the present time. I am not on oxygen but will be soon I think.

>

[Guest guest]

Well, I had to go back on pred for a very short course starting yesterday (5 days). I got a cold sitting outside on Halloween and developed bronchitis. I don't get hungry on pred, matter of fact I have to force myself to eat, but the sleeping is worth s--t. Oh well, at least (hopefully) it's only 5 days,but I realized that I do breathe better on it(Whine, whine)Kathy