Re: PF and Raynauds Disease

[Guest guest]

Good information. I find it very interesting to note the diseases

often seen together. For instance many have an autoimmune disease and

a form of PF. What is the relationship? Is one causing the other and,

if so, which one. Or are they both being caused by the same thing,

still to be determined? We just don't yet have the answers.

Another one I find interesting is the relationship of PF and GERD.

Now again, same questions...common cause or one causing the other. I

even found an old poll on this site interesting that over half the

people who voted had been tested for sleep apnea. Sure more than the

general population but is it just precautionary or is there some

connection there.

We talk about the research and trials and transplants being done. One

specific area of research we don't mention as much is the other

factors commonly found in patients with each different form of PF.

I initially intended to donate my organs until I understood that my

decision not to be on life support and expectations that I would

probably find myself dying in a hospice situation would probably

prohibit me. Now if I were to be in an auto accident or something it

would be different, but if I were to die a normal IPF death then

organ donation isn't likely to be possible. I'm still evaluating.

However, if I realize donation isn't likely, or in any case as a

second option, I'm now evaluating Willing my Body to UTSW for medical

research on PF in particular. I still am looking for lots of answers

but it does seem that would be of benefit.

>

> Long post here folks bear with me.

>

> Raynauds Syndrome is a vasospasmic disorder which affects between 5%

> to 10% of the US population. About 20% of women in their child

bearing

> years are afflicted. The disorder is more common among women than

men.

>

> There are two forms of the disease:

>

> Primary Raynauds is the most common form of the disease and usually

is

> of earlier onset. It is called Raynauds Disease (RD). It is of

unknown

> etiology.

>

> Secondary Raynauds is called Raynauds Phenomenon (RP). It is

> considered to be the more serious of the two and its onset is later

in

> life (third decade and out). RP like many forms of PF is considered

an

> inflammatory condition. Many forms of Pulmonary Fibrosis (PF), like

RP

> , are co-morbid or secondary diseases.

>

> Known causes of both RP and/or PF are:

>

> Collagen Vascular Disease, Connective Tissue Disease, Rheumatic

> Disease, Atherosclerosis, Auto-Immune Disease, Repetitive Stress

> Injuries, Trauma, Smoking, Medication and Chemotherapy exposure,

> Chemical exposure and, some Endocrine and Hormonal disorders.

>

> It is quite possible that many of us on this Board suffer from RP

and

> PF AND a PRIMARY co-morbid (co-existing) diagnosis.

>

> Last,in that UIP/IPF (usual interstitial pneumonitis / idiopathic

> pulmonary fibrosis)is NOT considered to be an inflammatory form of

PF

> and, is of unknown etiology it follows that if you suffer from

UIP/IPF

> and Raynauds it is more likely to be the less serious of the two RD

> and not RP.

>

> For me, my DX (5.06)is Usual Interstial Pneumonitis and Langerhans

> Cell Histiocytosis. I have had Raynauds Disease all my life. I find

RD

> to be distracting and inconvenient but never anything more than

that.

>

> UIP/LCH 5.06 CA

>

[Guest guest]

Thanks , That was really informative and for me it answered the question of why prednisone works for some of us and not for others. I thought all forms of PF were inflammatory and didn't realize IPF was not. Sarcoid/PF 3/2006 California PF and Raynauds Disease

Long post here folks bear with me.

Raynauds Syndrome is a vasospasmic disorder which affects between 5%

to 10% of the US population. About 20% of women in their child bearing

years are afflicted. The disorder is more common among women than men.

There are two forms of the disease:

Primary Raynauds is the most common form of the disease and usually is

of earlier onset. It is called Raynauds Disease (RD). It is of unknown

etiology.

Secondary Raynauds is called Raynauds Phenomenon (RP). It is

considered to be the more serious of the two and its onset is later in

life (third decade and out). RP like many forms of PF is considered an

inflammatory condition. Many forms of Pulmonary Fibrosis (PF), like RP

, are co-morbid or secondary diseases.

Known causes of both RP and/or PF are:

Collagen Vascular Disease, Connective Tissue Disease, Rheumatic

Disease, Atherosclerosis, Auto-Immune Disease, Repetitive Stress

Injuries, Trauma, Smoking, Medication and Chemotherapy exposure,

Chemical exposure and, some Endocrine and Hormonal disorders.

It is quite possible that many of us on this Board suffer from RP and

PF AND a PRIMARY co-morbid (co-existing) diagnosis.

Last,in that UIP/IPF (usual interstitial pneumonitis / idiopathic

pulmonary fibrosis)is NOT considered to be an inflammatory form of PF

and, is of unknown etiology it follows that if you suffer from UIP/IPF

and Raynauds it is more likely to be the less serious of the two RD

and not RP.

For me, my DX (5.06)is Usual Interstial Pneumonitis and Langerhans

Cell Histiocytosis. I have had Raynauds Disease all my life. I find RD

to be distracting and inconvenient but never anything more than that.

UIP/LCH 5.06 CA

Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.

[Guest guest]

Thanks , That was really informative and for me it answered the question of why prednisone works for some of us and not for others. I thought all forms of PF were inflammatory and didn't realize IPF was not. Sarcoid/PF 3/2006 California PF and Raynauds Disease

Long post here folks bear with me.

Raynauds Syndrome is a vasospasmic disorder which affects between 5%

to 10% of the US population. About 20% of women in their child bearing

years are afflicted. The disorder is more common among women than men.

There are two forms of the disease:

Primary Raynauds is the most common form of the disease and usually is

of earlier onset. It is called Raynauds Disease (RD). It is of unknown

etiology.

Secondary Raynauds is called Raynauds Phenomenon (RP). It is

considered to be the more serious of the two and its onset is later in

life (third decade and out). RP like many forms of PF is considered an

inflammatory condition. Many forms of Pulmonary Fibrosis (PF), like RP

, are co-morbid or secondary diseases.

Known causes of both RP and/or PF are:

Collagen Vascular Disease, Connective Tissue Disease, Rheumatic

Disease, Atherosclerosis, Auto-Immune Disease, Repetitive Stress

Injuries, Trauma, Smoking, Medication and Chemotherapy exposure,

Chemical exposure and, some Endocrine and Hormonal disorders.

It is quite possible that many of us on this Board suffer from RP and

PF AND a PRIMARY co-morbid (co-existing) diagnosis.

Last,in that UIP/IPF (usual interstitial pneumonitis / idiopathic

pulmonary fibrosis)is NOT considered to be an inflammatory form of PF

and, is of unknown etiology it follows that if you suffer from UIP/IPF

and Raynauds it is more likely to be the less serious of the two RD

and not RP.

For me, my DX (5.06)is Usual Interstial Pneumonitis and Langerhans

Cell Histiocytosis. I have had Raynauds Disease all my life. I find RD

to be distracting and inconvenient but never anything more than that.

UIP/LCH 5.06 CA

Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.

[Guest guest]

: And that is consistent with the general medical concensus

that Prednisone can help most forms of PF but does not help IPF,

although many doctors still prescribe or at least mention it on

a " just in case it does " basis and because some IPF patients have

reported some relief from it. Which gets back to why I personally got

a VATS. Confirming I had IPF, meant no prednisone to me.

>

> Thanks ,

> That was really informative and for me it answered the

question of why prednisone works for some of us and not for others.

I thought all forms of PF were inflammatory and didn't realize IPF

was not.

>

> Sarcoid/PF 3/2006 California

>

>

> PF and Raynauds Disease

>

>

>

>

>

>

>

>

>

>

>

>

>

>

> Long post here folks bear with me.

>

>

>

> Raynauds Syndrome is a vasospasmic disorder which affects between 5%

>

> to 10% of the US population. About 20% of women in their child

bearing

>

> years are afflicted. The disorder is more common among women than

men.

>

>

>

> There are two forms of the disease:

>

>

>

> Primary Raynauds is the most common form of the disease and usually

is

>

> of earlier onset. It is called Raynauds Disease (RD). It is of

unknown

>

> etiology.

>

>

>

> Secondary Raynauds is called Raynauds Phenomenon (RP). It is

>

> considered to be the more serious of the two and its onset is later

in

>

> life (third decade and out). RP like many forms of PF is considered

an

>

> inflammatory condition. Many forms of Pulmonary Fibrosis (PF), like

RP

>

> , are co-morbid or secondary diseases.

>

>

>

> Known causes of both RP and/or PF are:

>

>

>

> Collagen Vascular Disease, Connective Tissue Disease, Rheumatic

>

> Disease, Atherosclerosis, Auto-Immune Disease, Repetitive Stress

>

> Injuries, Trauma, Smoking, Medication and Chemotherapy exposure,

>

> Chemical exposure and, some Endocrine and Hormonal disorders.

>

>

>

> It is quite possible that many of us on this Board suffer from RP

and

>

> PF AND a PRIMARY co-morbid (co-existing) diagnosis.

>

>

>

> Last,in that UIP/IPF (usual interstitial pneumonitis / idiopathic

>

> pulmonary fibrosis)is NOT considered to be an inflammatory form of

PF

>

> and, is of unknown etiology it follows that if you suffer from

UIP/IPF

>

> and Raynauds it is more likely to be the less serious of the two RD

>

> and not RP.

>

>

>

> For me, my DX (5.06)is Usual Interstial Pneumonitis and Langerhans

>

> Cell Histiocytosis. I have had Raynauds Disease all my life. I find

RD

>

> to be distracting and inconvenient but never anything more than

that.

>

>

>

> UIP/LCH 5.06 CA

>

>

>

>

>

>

>

>

>

>

>

>

>

>

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[Guest guest]

Hi Bruce

As my consultant explained it, my dermatomyositis is caused by my immune system creating harmful b-cells, which attack my own body. (Not all b-cells are harmful) and it's these b-cells that are involved in my PF. I do know that people who are diagnosed with DMS now are automatically checked for ILD. Shame they didn't do that 12 years ago!> >> > Long post here folks bear with me.> > > > Raynauds Syndrome is a vasospasmic disorder which affects between 5%> > to 10% of the US population. About 20% of women in their child > bearing> > years are afflicted. The disorder is more common among women than > men.> > > > There are two forms of the disease: > > > > Primary Raynauds is the most common form of the disease and usually > is> > of earlier onset. It is called Raynauds Disease (RD). It is of > unknown> > etiology. > > > > Secondary Raynauds is called Raynauds Phenomenon (RP). It is> > considered to be the more serious of the two and its onset is later > in> > life (third decade and out). RP like many forms of PF is considered > an> > inflammatory condition. Many forms of Pulmonary Fibrosis (PF), like > RP> > , are co-morbid or secondary diseases. > > > > Known causes of both RP and/or PF are:> > > > Collagen Vascular Disease, Connective Tissue Disease, Rheumatic> > Disease, Atherosclerosis, Auto-Immune Disease, Repetitive Stress> > Injuries, Trauma, Smoking, Medication and Chemotherapy exposure,> > Chemical exposure and, some Endocrine and Hormonal disorders.> > > > It is quite possible that many of us on this Board suffer from RP > and> > PF AND a PRIMARY co-morbid (co-existing) diagnosis. > > > > Last,in that UIP/IPF (usual interstitial pneumonitis / idiopathic> > pulmonary fibrosis)is NOT considered to be an inflammatory form of > PF> > and, is of unknown etiology it follows that if you suffer from > UIP/IPF> > and Raynauds it is more likely to be the less serious of the two RD> > and not RP.> > > > For me, my DX (5.06)is Usual Interstial Pneumonitis and Langerhans> > Cell Histiocytosis. I have had Raynauds Disease all my life. I find > RD> > to be distracting and inconvenient but never anything more than > that.> > > > UIP/LCH 5.06 CA> >>

[Guest guest]

Hi Bruce

As my consultant explained it, my dermatomyositis is caused by my immune system creating harmful b-cells, which attack my own body. (Not all b-cells are harmful) and it's these b-cells that are involved in my PF. I do know that people who are diagnosed with DMS now are automatically checked for ILD. Shame they didn't do that 12 years ago!> >> > Long post here folks bear with me.> > > > Raynauds Syndrome is a vasospasmic disorder which affects between 5%> > to 10% of the US population. About 20% of women in their child > bearing> > years are afflicted. The disorder is more common among women than > men.> > > > There are two forms of the disease: > > > > Primary Raynauds is the most common form of the disease and usually > is> > of earlier onset. It is called Raynauds Disease (RD). It is of > unknown> > etiology. > > > > Secondary Raynauds is called Raynauds Phenomenon (RP). It is> > considered to be the more serious of the two and its onset is later > in> > life (third decade and out). RP like many forms of PF is considered > an> > inflammatory condition. Many forms of Pulmonary Fibrosis (PF), like > RP> > , are co-morbid or secondary diseases. > > > > Known causes of both RP and/or PF are:> > > > Collagen Vascular Disease, Connective Tissue Disease, Rheumatic> > Disease, Atherosclerosis, Auto-Immune Disease, Repetitive Stress> > Injuries, Trauma, Smoking, Medication and Chemotherapy exposure,> > Chemical exposure and, some Endocrine and Hormonal disorders.> > > > It is quite possible that many of us on this Board suffer from RP > and> > PF AND a PRIMARY co-morbid (co-existing) diagnosis. > > > > Last,in that UIP/IPF (usual interstitial pneumonitis / idiopathic> > pulmonary fibrosis)is NOT considered to be an inflammatory form of > PF> > and, is of unknown etiology it follows that if you suffer from > UIP/IPF> > and Raynauds it is more likely to be the less serious of the two RD> > and not RP.> > > > For me, my DX (5.06)is Usual Interstial Pneumonitis and Langerhans> > Cell Histiocytosis. I have had Raynauds Disease all my life. I find > RD> > to be distracting and inconvenient but never anything more than > that.> > > > UIP/LCH 5.06 CA> >>