Re: IPF that responds to Prednisone

[Guest guest]

oppm00@......Do you have a name?

Please use it to make it easier on us.

We all have a bit of OD...oxygen deprivation and our memories are not

as keen as they used to be.

In answer to your Prednisone and IPf...I have a form of Pf (NSIP)

which presently responds well to prednisone.

I have been able to remain stable since DX going from 40 mg of Pred

down over a long period of time to 10 mg

and I also take Imuran ( from 100mg down to 50 over the same 3+ years).

I am not aware if IPF responds to Prednisone at all.There are many

posts on this topic on this site.

You can research on the past messages to see the opinions here.

Z fibriotic NSIP/05

Z 65,

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

Vinca

Minor-periwinkle is my flower

oppm00@... wrote:

I have discuvered that if I take less than. 50mgs of Prednisone,

my lung functions significantly reduce. I also take NAC and Rhodia. I

am curios who else out there has IPF that responds to Prednisone uses

as supplements.

Sent on the TELUS Mobility network with BlackBerry

No virus found in this incoming message.

Checked by AVG - www.avg.com Version: 8.0.237 / Virus Database: 270.11.5/1978 - Release Date: 03/01/09 07:04:00

[Guest guest]

My name is . My diagnosis is IPF. I am also suprised that I respond to Prednisone. I am not on any oxygen. It is just recently that I discovered that if I take less than 50 mgs of Prednisone that my lung functions disappear. I had a biopsy. Is there a specific test for NSIP that I should request?Sent on the TELUS Mobility network with BlackBerryFrom: Zion Date: Sun, 01 Mar 2009 13:15:45 -0500To: <Breathe-Support >Subject: Re: IPF that responds to Prednisone oppm00 (AT) yahoo (DOT) com...Do you have a name? Please use it to make it easier on us. We all have a bit of OD...oxygen deprivation and our memories are not as keen as they used to be. In answer to your Prednisone and IPf...I have a form of Pf (NSIP) which presently responds well to prednisone. I have been able to remain stable since DX going from 40 mg of Pred down over a long period of time to 10 mg and I also take Imuran ( from 100mg down to 50 over the same 3+ years). I am not aware if IPF responds to Prednisone at all.There are many posts on this topic on this site. You can research on the past messages to see the opinions here. Z fibriotic NSIP/05 Z 65, 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 MarleyVinca Minor-periwinkle is my flower oppm00 (AT) yahoo (DOT) com wrote: I have discuvered that if I take less than. 50mgs of Prednisone, my lung functions significantly reduce. I also take NAC and Rhodia. I am curios who else out there has IPF that responds to Prednisone uses as supplements. Sent on the TELUS Mobility network with BlackBerry No virus found in this incoming message. Checked by AVG - www.avg.com Version: 8.0.237 / Virus Database: 270.11.5/1978 - Release Date: 03/01/09 07:04:00

[Guest guest]

, NSIP is just one of the 200 forms

of PF. On biopsy they can

determine that the pattern of fibrosis is different than for IPF.

There is no specific test you need to worry about.

The reading of the slides determines what form you have.

50 mg is a lot...be aware of all the nasty side-effects.

There is a file here on the database with the side-effects. You should

read it to help you with this mess.

BTW..most IPF does not respond to prednisone at all

My major problems with Prednisone are cognitive..my memory and my

ablility

to follow directions and follow the thread in a novel and in a

conversation I now forget

what I'm talking about a times..

All this stinks because I am a reading specialist (retired)

Z fibriotic NSIP/05

Z 65,

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

Vinca

Minor-periwinkle is my flower

oppm00@... wrote:

My name is . My diagnosis is IPF. I am also suprised that I

respond to Prednisone. I am not on any oxygen. It is just recently that

I discovered that if I take less than 50 mgs of Prednisone that my lung

functions disappear. I had a biopsy. Is there a specific test for NSIP

that I should request?

Sent on the TELUS Mobility network with BlackBerry

From:

Zion

Date: Sun, 01 Mar 2009 13:15:45 -0500

To: <Breathe-Support >

Subject: Re: IPF that responds to Prednisone

oppm00 (AT) yahoo (DOT) com...Do

you have a name? Please use it to make it easier on us.

We all have a bit of OD...oxygen deprivation and our memories are not

as keen as they used to be.

In answer to your Prednisone and IPf...I have a form of Pf (NSIP)

which presently responds well to prednisone.

I have been able to remain stable since DX going from 40 mg of Pred

down over a long period of time to 10 mg

and I also take Imuran ( from 100mg down to 50 over the same 3+ years).

I am not aware if IPF responds to Prednisone at all.There are many

posts on this topic on this site.

You can research on the past messages to see the opinions here.

Z fibriotic NSIP/05

Z 65,

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

Vinca Minor-periwinkle is my flower

oppm00 (AT) yahoo (DOT) com wrote:

I have discuvered that if I take less than. 50mgs of Prednisone,

my lung functions significantly reduce. I also take NAC and Rhodia. I

am curios who else out there has IPF that responds to Prednisone uses

as supplements.

Sent on the TELUS Mobility network with BlackBerry

No virus found in this incoming message. Checked by AVG - www.avg.com Version: 8.0.237 / Virus Database: 270.11.5/1978 - Release Date: 03/01/09 07:04:00

No virus found in this incoming message.

Checked by AVG - www.avg.com Version: 8.0.237 / Virus Database: 270.11.5/1978 - Release Date: 03/01/09 07:04:00

[Guest guest]

my ipf responds to prednisone

Pink Joyce IPF 3/06 Pennsylvania

Donate Life Listed 1/09

www.transplantfund.org---

Subject: Re: IPF that responds to PrednisoneTo: Breathe-Support Date: Sunday, March 1, 2009, 1:15 PM

oppm00 (AT) yahoo (DOT) com...Do you have a name? Please use it to make it easier on us. We all have a bit of OD...oxygen deprivation and our memories are not as keen as they used to be.In answer to your Prednisone and IPf...I have a form of Pf (NSIP) which presently responds well to prednisone.I have been able to remain stable since DX going from 40 mg of Pred down over a long period of time to 10 mgand I also take Imuran ( from 100mg down to 50 over the same 3+ years).I am not aware if IPF responds to Prednisone at all.There are many posts on this topic on this site.You can research on the past messages to see the opinions here.

Z 65, 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

Vinca Minor-periwinkle is my flower

oppm00 (AT) yahoo (DOT) com wrote:

I have discuvered that if I take less than. 50mgs of Prednisone, my lung functions significantly reduce. I also take NAC and Rhodia. I am curios who else out there has IPF that responds to Prednisone uses as supplements. Sent on the TELUS Mobility network with BlackBerry

No virus found in this incoming message.

Checked by AVG - www.avg.com Version: 8.0.237 / Virus Database: 270.11.5/1978 - Release Date: 03/01/09 07:04:00

[Guest guest]

I have had no side effects. I have ADD so the concentration is not an issue. My weight is under control and stable. My sleep is not bad. I was just curios if there was anything else that I could try to help. Thank-you.Sent on the TELUS Mobility network with BlackBerryFrom: Zion Date: Sun, 01 Mar 2009 14:18:16 -0500To: <Breathe-Support >Subject: Re: IPF that responds to Prednisone , NSIP is just one of the 200 forms of PF. On biopsy they can determine that the pattern of fibrosis is different than for IPF. There is no specific test you need to worry about. The reading of the slides determines what form you have. 50 mg is a lot...be aware of all the nasty side-effects. There is a file here on the database with the side-effects. You should read it to help you with this mess. BTW..most IPF does not respond to prednisone at all My major problems with Prednisone are cognitive..my memory and my ablility to follow directions and follow the thread in a novel and in a conversation I now forget what I'm talking about a times.. All this stinks because I am a reading specialist (retired) Z fibriotic NSIP/05 Z 65, 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 MarleyVinca Minor-periwinkle is my flower oppm00 (AT) yahoo (DOT) com wrote: My name is . My diagnosis is IPF. I am also suprised that I respond to Prednisone. I am not on any oxygen. It is just recently that I discovered that if I take less than 50 mgs of Prednisone that my lung functions disappear. I had a biopsy. Is there a specific test for NSIP that I should request? Sent on the TELUS Mobility network with BlackBerry From: Zion Date: Sun, 01 Mar 2009 13:15:45 -0500 To: <Breathe-Support > Subject: Re: IPF that responds to Prednisone oppm00 (AT) yahoo (DOT) com...Do you have a name? Please use it to make it easier on us. We all have a bit of OD...oxygen deprivation and our memories are not as keen as they used to be. In answer to your Prednisone and IPf...I have a form of Pf (NSIP) which presently responds well to prednisone. I have been able to remain stable since DX going from 40 mg of Pred down over a long period of time to 10 mg and I also take Imuran ( from 100mg down to 50 over the same 3+ years). I am not aware if IPF responds to Prednisone at all.There are many posts on this topic on this site. You can research on the past messages to see the opinions here. Z fibriotic NSIP/05 Z 65, 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 Vinca Minor-periwinkle is my flower oppm00 (AT) yahoo (DOT) com wrote: I have discuvered that if I take less than. 50mgs of Prednisone, my lung functions significantly reduce. I also take NAC and Rhodia. I am curios who else out there has IPF that responds to Prednisone uses as supplements. Sent on the TELUS Mobility network with BlackBerry No virus found in this incoming message. Checked by AVG - www.avg.com Version: 8.0.237 / Virus Database: 270.11.5/1978 - Release Date: 03/01/09 07:04:00 No virus found in this incoming message. Checked by AVG - www.avg.com Version: 8.0.237 / Virus Database: 270.11.5/1978 - Release Date: 03/01/09 07:04:00

[Guest guest]

Will you please sign your name...and even State and dx so we can remember you.

Thanks.

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

Re: IPF that responds to Prednisone

oppm00 (AT) yahoo (DOT) com...Do you have a name? Please use it to make it easier on us. We all have a bit of OD...oxygen deprivation and our memories are not as keen as they used to be.In answer to your Prednisone and IPf...I have a form of Pf (NSIP) which presently responds well to prednisone.I have been able to remain stable since DX going from 40 mg of Pred down over a long period of time to 10 mgand I also take Imuran ( from 100mg down to 50 over the same 3+ years).I am not aware if IPF responds to Prednisone at all.There are many posts on this topic on this site.You can research on the past messages to see the opinions here.

Z 65, 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

Vinca Minor-periwinkle is my flower

<!--[if !supportEmptyParas]--> <!--[endif]-->

<!--[if !supportEmptyParas]--> <!--[endif]-->oppm00 (AT) yahoo (DOT) com wrote:

I have discuvered that if I take less than. 50mgs of Prednisone, my lung functions significantly reduce. I also take NAC and Rhodia. I am curios who else out there has IPF that responds to Prednisone uses as supplements. Sent on the TELUS Mobility network with BlackBerry No virus found in this incoming message. Checked by AVG - www.avg.com Version: 8.0.237 / Virus Database: 270.11.5/1978 - Release Date: 03/01/09 07:04:00 No virus found in this incoming message. Checked by AVG - www.avg.com Version: 8.0.237 / Virus Database: 270.11.5/1978 - Release Date: 03/01/09 07:04:00

[Guest guest]

,

IPF only occasionally responds to prednisone. I'm happy that it works well for you. How long have you been on it? 50mg is quite a high dose to be on for any extended period of time. It's extremely unusual to be on that high a dose and have no side effects at all. Just be cautious of the things that creep up on you without you being aware of it. Things like unstable blood sugar, bone loss and immune suppression. I'm assuming your doctor explained all this to you so this is just by way of reminder. You did say you were on 50mg right?

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Sunday, March 1, 2009 2:33:24 PMSubject: Re: IPF that responds to Prednisone

I have had no side effects. I have ADD so the concentration is not an issue. My weight is under control and stable. My sleep is not bad. I was just curios if there was anything else that I could try to help. Thank-you.

Sent on the TELUS Mobility network with BlackBerry

From: Zion Date: Sun, 01 Mar 2009 14:18:16 -0500To: <Breathe-Support@ yahoogroups. com>Subject: Re: IPF that responds to Prednisone

, NSIP is just one of the 200 forms of PF. On biopsy they candetermine that the pattern of fibrosis is different than for IPF. There is no specific test you need to worry about.The reading of the slides determines what form you have.50 mg is a lot...be aware of all the nasty side-effects.There is a file here on the database with the side-effects. You should read it to help you with this mess.BTW..most IPF does not respond to prednisone at allMy major problems with Prednisone are cognitive..my memory and my ablilityto follow directions and follow the thread in a novel and in a conversation I now forgetwhat I'm talking about a times..All this stinks because I am a reading specialist (retired)

Z 65, 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

Vinca Minor-periwinkle is my flower

oppm00 (AT) yahoo (DOT) com wrote:

My name is . My diagnosis is IPF. I am also suprised that I respond to Prednisone. I am not on any oxygen. It is just recently that I discovered that if I take less than 50 mgs of Prednisone that my lung functions disappear. I had a biopsy. Is there a specific test for NSIP that I should request?

Sent on the TELUS Mobility network with BlackBerry

From: Zion Date: Sun, 01 Mar 2009 13:15:45 -0500To: <Breathe-Support@ yahoogroups. com>Subject: Re: IPF that responds to Prednisone

oppm00 (AT) yahoo (DOT) com...Do you have a name? Please use it to make it easier on us. We all have a bit of OD...oxygen deprivation and our memories are not as keen as they used to be.In answer to your Prednisone and IPf...I have a form of Pf (NSIP) which presently responds well to prednisone.I have been able to remain stable since DX going from 40 mg of Pred down over a long period of time to 10 mgand I also take Imuran ( from 100mg down to 50 over the same 3+ years).I am not aware if IPF responds to Prednisone at all.There are many posts on this topic on this site.You can research on the past messages to see the opinions here.

Z 65, 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

Vinca Minor-periwinkle is my flower

oppm00 (AT) yahoo (DOT) com wrote:

I have discuvered that if I take less than. 50mgs of Prednisone, my lung functions significantly reduce. I also take NAC and Rhodia. I am curios who else out there has IPF that responds to Prednisone uses as supplements. Sent on the TELUS Mobility network with BlackBerry No virus found in this incoming message. Checked by AVG - www.avg.com Version: 8.0.237 / Virus Database: 270.11.5/1978 - Release Date: 03/01/09 07:04:00 No virus found in this incoming message. Checked by AVG - www.avg.com Version: 8.0.237 / Virus Database: 270.11.5/1978 - Release Date: 03/01/09 07:04:00

[Guest guest]

By the way , I'm not familiar with Rhodia. Is it a medication, a supplement, what is it and what does it do for you?

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Sunday, March 1, 2009 11:26:33 AMSubject: IPF that responds to Prednisone

I have discuvered that if I take less than. 50mgs of Prednisone, my lung functions significantly reduce. I also take NAC and Rhodia. I am curios who else out there has IPF that responds to Prednisone uses as supplements. Sent on the TELUS Mobility network with BlackBerry

[Guest guest]

I was diagnosed March of 2008. I take additional Calcium to combat any bone loss from the Prednisone. I have my blood sugar checked regularly and are just higher end of normal. Sent on the TELUS Mobility network with BlackBerryFrom: Beth Date: Sun, 1 Mar 2009 11:55:39 -0800 (PST)To: <Breathe-Support >Subject: Re: IPF that responds to Prednisone ,IPF only occasionally responds to prednisone. I'm happy that it works well for you. How long have you been on it? 50mg is quite a high dose to be on for any extended period of time. It's extremely unusual to be on that high a dose and have no side effects at all. Just be cautious of the things that creep up on you without you being aware of it. Things like unstable blood sugar, bone loss and immune suppression. I'm assuming your doctor explained all this to you so this is just by way of reminder. You did say you were on 50mg right? BethModeratorFibrotic NSIP 06/06 Dermatomyositis 11/08From: "oppm00 (AT) yahoo (DOT) com" <oppm00 (AT) yahoo (DOT) com>To: Breathe-Support Sent: Sunday, March 1, 2009 2:33:24 PMSubject: Re: IPF that responds to PrednisoneI have had no side effects. I have ADD so the concentration is not an issue. My weight is under control and stable. My sleep is not bad. I was just curios if there was anything else that I could try to help. Thank-you.Sent on the TELUS Mobility network with BlackBerryFrom: Zion Date: Sun, 01 Mar 2009 14:18:16 -0500To: <Breathe-Support@ yahoogroups. com>Subject: Re: IPF that responds to Prednisone, NSIP is just one of the 200 forms of PF. On biopsy they candetermine that the pattern of fibrosis is different than for IPF. There is no specific test you need to worry about.The reading of the slides determines what form you have.50 mg is a lot...be aware of all the nasty side-effects.There is a file here on the database with the side-effects. You should read it to help you with this mess.BTW..most IPF does not respond to prednisone at allMy major problems with Prednisone are cognitive..my memory and my ablilityto follow directions and follow the thread in a novel and in a conversation I now forgetwhat I'm talking about a times..All this stinks because I am a reading specialist (retired) Z 65, 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 MarleyVinca Minor-periwinkle is my flower oppm00 (AT) yahoo (DOT) com wrote:My name is . My diagnosis is IPF. I am also suprised that I respond to Prednisone. I am not on any oxygen. It is just recently that I discovered that if I take less than 50 mgs of Prednisone that my lung functions disappear. I had a biopsy. Is there a specific test for NSIP that I should request?Sent on the TELUS Mobility network with BlackBerryFrom: Zion Date: Sun, 01 Mar 2009 13:15:45 -0500To: <Breathe-Support@ yahoogroups. com>Subject: Re: IPF that responds to Prednisoneoppm00 (AT) yahoo (DOT) com...Do you have a name? Please use it to make it easier on us. We all have a bit of OD...oxygen deprivation and our memories are not as keen as they used to be.In answer to your Prednisone and IPf...I have a form of Pf (NSIP) which presently responds well to prednisone.I have been able to remain stable since DX going from 40 mg of Pred down over a long period of time to 10 mgand I also take Imuran ( from 100mg down to 50 over the same 3+ years).I am not aware if IPF responds to Prednisone at all.There are many posts on this topic on this site.You can research on the past messages to see the opinions here. Z 65, 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 MarleyVinca Minor-periwinkle is my flower oppm00 (AT) yahoo (DOT) com wrote: I have discuvered that if I take less than. 50mgs of Prednisone, my lung functions significantly reduce. I also take NAC and Rhodia. I am curios who else out there has IPF that responds to Prednisone uses as supplements. Sent on the TELUS Mobility network with BlackBerry No virus found in this incoming message. Checked by AVG - www.avg.com Version: 8.0.237 / Virus Database: 270.11.5/1978 - Release Date: 03/01/09 07:04:00 No virus found in this incoming message. Checked by AVG - www.avg.com Version: 8.0.237 / Virus Database: 270.11.5/1978 - Release Date: 03/01/09 07:04:00

[Guest guest]

Rhodiola is a supplenent. It is used by high altitude runners.Sent on the TELUS Mobility network with BlackBerryFrom: Beth Date: Sun, 1 Mar 2009 11:57:19 -0800 (PST)To: <Breathe-Support >Subject: Re: IPF that responds to Prednisone By the way , I'm not familiar with Rhodia. Is it a medication, a supplement, what is it and what does it do for you? BethModeratorFibrotic NSIP 06/06 Dermatomyositis 11/08From: "oppm00 (AT) yahoo (DOT) com" <oppm00 (AT) yahoo (DOT) com>To: Breathe-Support Sent: Sunday, March 1, 2009 11:26:33 AMSubject: IPF that responds to PrednisoneI have discuvered that if I take less than. 50mgs of Prednisone, my lung functions significantly reduce. I also take NAC and Rhodia. I am curios who else out there has IPF that responds to Prednisone uses as supplements. Sent on the TELUS Mobility network with BlackBerry

[Guest guest]

Rhodiola is a supplenent. It is used by high altitude runners.Sent on the TELUS Mobility network with BlackBerryFrom: Beth Date: Sun, 1 Mar 2009 11:57:19 -0800 (PST)To: <Breathe-Support >Subject: Re: IPF that responds to Prednisone By the way , I'm not familiar with Rhodia. Is it a medication, a supplement, what is it and what does it do for you? BethModeratorFibrotic NSIP 06/06 Dermatomyositis 11/08From: "oppm00 (AT) yahoo (DOT) com" <oppm00 (AT) yahoo (DOT) com>To: Breathe-Support Sent: Sunday, March 1, 2009 11:26:33 AMSubject: IPF that responds to PrednisoneI have discuvered that if I take less than. 50mgs of Prednisone, my lung functions significantly reduce. I also take NAC and Rhodia. I am curios who else out there has IPF that responds to Prednisone uses as supplements. Sent on the TELUS Mobility network with BlackBerry

[Guest guest]

the pulmonary took me off of evista because of prednisone

and ordered the generic fosamax

the gyn questioned the high dose

the pulmonary said because of the prednisone

Pink Joyce IPF 3/06 Pennsylvania

Donate Life Listed 1/09

www.transplantfund.org---

Subject: Re: IPF that responds to PrednisoneTo: Breathe-Support Date: Sunday, March 1, 2009, 3:19 PM

I was diagnosed March of 2008. I take additional Calcium to combat any bone loss from the Prednisone. I have my blood sugar checked regularly and are just higher end of normal.

Sent on the TELUS Mobility network with BlackBerry

From: Beth Date: Sun, 1 Mar 2009 11:55:39 -0800 (PST)To: <Breathe-Support@ yahoogroups. com>Subject: Re: IPF that responds to Prednisone

,

IPF only occasionally responds to prednisone. I'm happy that it works well for you. How long have you been on it? 50mg is quite a high dose to be on for any extended period of time. It's extremely unusual to be on that high a dose and have no side effects at all. Just be cautious of the things that creep up on you without you being aware of it. Things like unstable blood sugar, bone loss and immune suppression. I'm assuming your doctor explained all this to you so this is just by way of reminder. You did say you were on 50mg right?

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

From: "oppm00 (AT) yahoo (DOT) com" <oppm00 (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Sunday, March 1, 2009 2:33:24 PMSubject: Re: IPF that responds to Prednisone

I have had no side effects. I have ADD so the concentration is not an issue. My weight is under control and stable. My sleep is not bad. I was just curios if there was anything else that I could try to help. Thank-you.

Sent on the TELUS Mobility network with BlackBerry

From: Zion Date: Sun, 01 Mar 2009 14:18:16 -0500To: <Breathe-Support@ yahoogroups. com>Subject: Re: IPF that responds to Prednisone

, NSIP is just one of the 200 forms of PF. On biopsy they candetermine that the pattern of fibrosis is different than for IPF. There is no specific test you need to worry about.The reading of the slides determines what form you have.50 mg is a lot...be aware of all the nasty side-effects.There is a file here on the database with the side-effects. You should read it to help you with this mess.BTW..most IPF does not respond to prednisone at allMy major problems with Prednisone are cognitive..my memory and my ablilityto follow directions and follow the thread in a novel and in a conversation I now forgetwhat I'm talking about a times..All this stinks because I am a reading specialist (retired)

Z 65, 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

Vinca Minor-periwinkle is my flower

oppm00 (AT) yahoo (DOT) com wrote:

My name is . My diagnosis is IPF. I am also suprised that I respond to Prednisone. I am not on any oxygen. It is just recently that I discovered that if I take less than 50 mgs of Prednisone that my lung functions disappear. I had a biopsy. Is there a specific test for NSIP that I should request?

Sent on the TELUS Mobility network with BlackBerry

From: Zion Date: Sun, 01 Mar 2009 13:15:45 -0500To: <Breathe-Support@ yahoogroups. com>Subject: Re: IPF that responds to Prednisone

oppm00 (AT) yahoo (DOT) com...Do you have a name? Please use it to make it easier on us. We all have a bit of OD...oxygen deprivation and our memories are not as keen as they used to be.In answer to your Prednisone and IPf...I have a form of Pf (NSIP) which presently responds well to prednisone.I have been able to remain stable since DX going from 40 mg of Pred down over a long period of time to 10 mgand I also take Imuran ( from 100mg down to 50 over the same 3+ years).I am not aware if IPF responds to Prednisone at all.There are many posts on this topic on this site.You can research on the past messages to see the opinions here.

Z 65, 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

Vinca Minor-periwinkle is my flower

oppm00 (AT) yahoo (DOT) com wrote:

I have discuvered that if I take less than. 50mgs of Prednisone, my lung functions significantly reduce. I also take NAC and Rhodia. I am curios who else out there has IPF that responds to Prednisone uses as supplements. Sent on the TELUS Mobility network with BlackBerry No virus found in this incoming message. Checked by AVG - www.avg.com Version: 8.0.237 / Virus Database: 270.11.5/1978 - Release Date: 03/01/09 07:04:00 No virus found in this incoming message. Checked by AVG - www.avg.com Version: 8.0.237 / Virus Database: 270.11.5/1978 - Release Date: 03/01/09 07:04:00

[Guest guest]

OTC or precription?

ken o.

To: Breathe-Support Sent: Sunday, March 1, 2009 12:20:24 PMSubject: Re: IPF that responds to Prednisone

Rhodiola is a supplenent. It is used by high altitude runners.

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From: Beth Date: Sun, 1 Mar 2009 11:57:19 -0800 (PST)To: <Breathe-Support@ yahoogroups. com>Subject: Re: IPF that responds to Prednisone

By the way , I'm not familiar with Rhodia. Is it a medication, a supplement, what is it and what does it do for you?

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

From: "oppm00 (AT) yahoo (DOT) com" <oppm00 (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Sunday, March 1, 2009 11:26:33 AMSubject: IPF that responds to Prednisone

I have discuvered that if I take less than. 50mgs of Prednisone, my lung functions significantly reduce. I also take NAC and Rhodia. I am curios who else out there has IPF that responds to Prednisone uses as supplements. Sent on the TELUS Mobility network with BlackBerry

[Guest guest]

OTC. Sent on the TELUS Mobility network with BlackBerryFrom: Overman Date: Sun, 1 Mar 2009 14:39:16 -0800 (PST)To: <Breathe-Support >Subject: Re: IPF that responds to Prednisone OTC or precription?ken o.From: "oppm00 (AT) yahoo (DOT) com" <oppm00 (AT) yahoo (DOT) com>To: Breathe-Support Sent: Sunday, March 1, 2009 12:20:24 PMSubject: Re: IPF that responds to PrednisoneRhodiola is a supplenent. It is used by high altitude runners.Sent on the TELUS Mobility network with BlackBerryFrom: Beth Date: Sun, 1 Mar 2009 11:57:19 -0800 (PST)To: <Breathe-Support@ yahoogroups. com>Subject: Re: IPF that responds to PrednisoneBy the way , I'm not familiar with Rhodia. Is it a medication, a supplement, what is it and what does it do for you? BethModeratorFibrotic NSIP 06/06 Dermatomyositis 11/08From: "oppm00 (AT) yahoo (DOT) com" <oppm00 (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Sunday, March 1, 2009 11:26:33 AMSubject: IPF that responds to PrednisoneI have discuvered that if I take less than. 50mgs of Prednisone, my lung functions significantly reduce. I also take NAC and Rhodia. I am curios who else out there has IPF that responds to Prednisone uses as supplements. Sent on the TELUS Mobility network with BlackBerry

[Guest guest]

OTC. Sent on the TELUS Mobility network with BlackBerryFrom: Overman Date: Sun, 1 Mar 2009 14:39:16 -0800 (PST)To: <Breathe-Support >Subject: Re: IPF that responds to Prednisone OTC or precription?ken o.From: "oppm00 (AT) yahoo (DOT) com" <oppm00 (AT) yahoo (DOT) com>To: Breathe-Support Sent: Sunday, March 1, 2009 12:20:24 PMSubject: Re: IPF that responds to PrednisoneRhodiola is a supplenent. It is used by high altitude runners.Sent on the TELUS Mobility network with BlackBerryFrom: Beth Date: Sun, 1 Mar 2009 11:57:19 -0800 (PST)To: <Breathe-Support@ yahoogroups. com>Subject: Re: IPF that responds to PrednisoneBy the way , I'm not familiar with Rhodia. Is it a medication, a supplement, what is it and what does it do for you? BethModeratorFibrotic NSIP 06/06 Dermatomyositis 11/08From: "oppm00 (AT) yahoo (DOT) com" <oppm00 (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Sunday, March 1, 2009 11:26:33 AMSubject: IPF that responds to PrednisoneI have discuvered that if I take less than. 50mgs of Prednisone, my lung functions significantly reduce. I also take NAC and Rhodia. I am curios who else out there has IPF that responds to Prednisone uses as supplements. Sent on the TELUS Mobility network with BlackBerry

[Guest guest]

over the counter 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."  OTC.Sent on the TELUS Mobility network with BlackBerryFrom: Overman Date: Sun, 1 Mar 2009 14:39:16 -0800 (PST)To: <Breathe-Support >Subject: Re: IPF that responds to PrednisoneOTC or precription?ken o.From: "oppm00 (AT) yahoo (DOT) com" <oppm00 (AT) yahoo (DOT) com>To: Breathe-Support Sent: Sunday, March 1, 2009 12:20:24 PMSubject: Re: IPF that responds to PrednisoneRhodiola is a supplenent. It is used by high altitude runners.Sent on the TELUS Mobility network with BlackBerryFrom: Beth Date: Sun, 1 Mar 2009 11:57:19 -0800 (PST)To: <Breathe-Support@ yahoogroups. com>Subject: Re: IPF that responds to PrednisoneBy the way , I'm not familiar with Rhodia. Is it a medication, a supplement, what is it and what does it do for you?  BethModeratorFibrotic NSIP 06/06 Dermatomyositis 11/08From: "oppm00 (AT) yahoo (DOT) com" <oppm00 (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Sunday, March 1, 2009 11:26:33 AMSubject:  IPF that responds to PrednisoneI have discuvered that if I take less than. 50mgs of Prednisone, my lung functions significantly reduce. I also take NAC and Rhodia. I am curios who else out there has IPF that responds to Prednisone uses as supplements. Sent on the TELUS Mobility network with BlackBerry

[Guest guest]

over the counter 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."  OTC.Sent on the TELUS Mobility network with BlackBerryFrom: Overman Date: Sun, 1 Mar 2009 14:39:16 -0800 (PST)To: <Breathe-Support >Subject: Re: IPF that responds to PrednisoneOTC or precription?ken o.From: "oppm00 (AT) yahoo (DOT) com" <oppm00 (AT) yahoo (DOT) com>To: Breathe-Support Sent: Sunday, March 1, 2009 12:20:24 PMSubject: Re: IPF that responds to PrednisoneRhodiola is a supplenent. It is used by high altitude runners.Sent on the TELUS Mobility network with BlackBerryFrom: Beth Date: Sun, 1 Mar 2009 11:57:19 -0800 (PST)To: <Breathe-Support@ yahoogroups. com>Subject: Re: IPF that responds to PrednisoneBy the way , I'm not familiar with Rhodia. Is it a medication, a supplement, what is it and what does it do for you?  BethModeratorFibrotic NSIP 06/06 Dermatomyositis 11/08From: "oppm00 (AT) yahoo (DOT) com" <oppm00 (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Sunday, March 1, 2009 11:26:33 AMSubject:  IPF that responds to PrednisoneI have discuvered that if I take less than. 50mgs of Prednisone, my lung functions significantly reduce. I also take NAC and Rhodia. I am curios who else out there has IPF that responds to Prednisone uses as supplements. Sent on the TELUS Mobility network with BlackBerry

[Guest guest]

/MB/Joyce

It gets very complicated when one starts talking about what responds and

doesn't. It is generally felt that UIP (whether IPF or not) does not

respond to Prednisone, unless there is alveolitis (inflammation) and

then that may get some temporary benefit but not long term. However,

there may be occasions in which there is an underlying connective tissue

disease that respond. In addition, the diagnosis may not be correct.

The word IPF is used by people sometimes in different ways. Sometimes it

is used specifically to denote UIP of unknown cause and sometimes used

to denote any PF of unknown cause.

There are many debates on whether to use prednisone with UIP and with

IPF. I read an excellent one sometime back with Dr. Raghu saying it

should be prescribed and the other doctor saying no. Dr. Raghu's

arguments were that it would help if there was inflammation, that there

was nothing else to prescribe, and that often the diagnosis was

incorrect. The other doctor argued simply that when there wasn't

inflammation nor another factor involved, there was no evidence it

helps. Again, Dr. Raghu takes what he considers the more conservative

approach and that is to prescribe it and see if it helps. If not, then

stop it.

So, whether to take it or not, becomes a very personal decision. It also

involves knowing very specifically what your biopsy shows as well as

CT's and having a detailed discussion. I don't take it personally

because I have UIP with no Alveolitis and no diagnosed (although often

suspected) autoimmune disease and because of an understanding of myself

and the effect meds have on me and especially the impact the side

effects of prednisone would have. But, my decision and choice is only

for me. No one else is in the exact same situation. No one else is in

your exact situation either. We took a survey at one time here and found

approximately 33% had used prednisone and benefitted from it and were

still on it at that time. This percentage seems consistent with

everything I've read. Now, for specific situations then it is higher or

lower.

> I have discuvered that if I take less than. 50mgs of Prednisone, my

lung functions significantly reduce. I also take NAC and Rhodia. I am

curios who else out there has IPF that responds to Prednisone uses as

supplements.

> Sent on the TELUS Mobility network with BlackBerry

>

>

>

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