Re: Lumping of the diseases

[Guest guest]

Bruce,Thanks for so much effort you always put into your research.  I for one, always read it, digest it, and usually file it away in a folder I keep for this illness business.  Your comment about sarcoidosis hit the mark with me.  When I first joined this board, there was only and me with sarcoid.  I seem to remember several others as time went by (Jon was one) but as you mentioned, it isn't talked about much.  I know that Jon went to the other board when he was diagnosed with sarcoid.  I belong to the other board too, because there are problems associated with that disease that aren't the same as our PF.I would be very happy to share information on my sarcoidosis as it is the cause of my PF, but I have to warn you, it does

cause me to "whine".Thanks again for all you do for this group.  You are invaluable!Roxanne, 59, South Carolina

2006 Asthma/ PF

2008 PF/ Sarcoidosis/Gerd

I pray you enough.....Subject: Lumping of the diseasesTo: Breathe-Support Date: Saturday, January 2, 2010, 10:29 AM

 

I found it interesting to read some more date published by the

University of Pittsburgh ILD center. Here are the patients who went to

their center from January 1-October 14, 2009.

Now, tossing out some more interesting information (at least to me) and

that is a breakdown of the patients who went to the University of

Pittsburgh ILD center from January 1-October 14 of last year.

IPF UIP 574

Sarcoidosis 502

PF Rheumatoid Condition 277

ILD Ruled Out 179

Under Evaluation 179

Hypersensitivity Pneumonitis 51

PF of other Causes 49

Other IIP's 44

Pulmonary Hypertension 33

Occupational Diseases 26

So, only 30% of the patients had IPF UIP.

I'm surprised we don't talk more here about Sarcoidosis and that makes

me think either they're going to their own forum and/or its being

underdiagnosed by many doctors. Also note that of the patients sent to

the ILD center approximately 10% were determined not to have an ILD and

another 10% haven't been determined yet.

[Guest guest]

Roxanne, I have a new friend here who has

sarciodosis...I did not know that it causes PF.

She does not talk about that aspect at all. Can you tell me some of the

symptoms?She's not on O2,

but takes methortrexate and I think even Imuran.

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

 

 

Roxanne Wooten wrote:

 

Bruce,

Thanks for so much effort you always put into your

research.  I for one, always read it, digest it, and usually file it

away in a folder I keep for this illness business.  

Your comment about sarcoidosis hit the mark with me.  When

I first joined this board, there was only and me with sarcoid.

 I seem to remember several others as time went by (Jon was one) but as

you mentioned, it isn't talked about much.  I know that Jon went to the

other board when he was diagnosed with sarcoid.  I belong to the other

board too, because there are problems associated with that disease that

aren't the same as our PF.

I would be very happy to share information on my

sarcoidosis as it is the cause of my PF, but I have to warn you, it

does cause me to "whine".

Thanks again for all you do for this group.  You are

invaluable!

Roxanne, 59, South Carolina

2006 Asthma/ PF

2008 PF/ Sarcoidosis/Gerd

I pray you enough.....

From: Bruce <brucemoreland (AT) gmail (DOT) com>

Subject: Lumping of the diseases

To: Breathe-Support

Date: Saturday, January 2, 2010, 10:29 AM

 

I found it interesting to read some more date published by

the

University of Pittsburgh ILD center. Here are the patients who went to

their center from January 1-October 14, 2009.

Now, tossing out some more interesting information (at least to me) and

that is a breakdown of the patients who went to the University of

Pittsburgh ILD center from January 1-October 14 of last year.

IPF UIP 574

Sarcoidosis 502

PF Rheumatoid Condition 277

ILD Ruled Out 179

Under Evaluation 179

Hypersensitivity Pneumonitis 51

PF of other Causes 49

Other IIP's 44

Pulmonary Hypertension 33

Occupational Diseases 26

So, only 30% of the patients had IPF UIP.

I'm surprised we don't talk more here about Sarcoidosis and that makes

me think either they're going to their own forum and/or its being

underdiagnosed by many doctors. Also note that of the patients sent to

the ILD center approximately 10% were determined not to have an ILD and

another 10% haven't been determined yet.

[Guest guest]

Bruce,

I think I owe you a Doctor visit fee. After one year of IPF I think you have diagnosed my decease! You may remember, that the after last visit to my Doctor he said that my lungs had improved, and the only thing I had done was to start taking NAC. Until now I have believed that I had IPF, period. After reading your post I went out and Googled "sarcoidosis". There was a site that had pictures of Sarcoidosis and it exactly showed what I have, and have been experiencing!

I have a spot on my ankle that I have had for about two years that Itches, dry skin,small raised red spots, that I have not been able to get rid of no matter how hard I tried . I have been putting Neosporin on it morning and night, to no avail. I have tried other lotions, the last one Diane (My Wife) bought was $30.00 a jar & even that didn't help. Then I noticed my elbow had the same thing and I started putting some lotion on it also. No help. I pretty much attributed it to winter dryness in Michigan.

After looking at the pictures I have no doubt in my mind its sarcoidosis. I think i will now have to rethink the prednisone treatment. It may be that pred could help the progression although the article noted it may clear up on its own after several years, but then again, it also may not. So............???

I think I am in "stage four" according to the pictures of lung X-rays they show on the website. I think its time for me to get referred to one of the educational centers. One of my sons lives in Denver so I could go there, or I could go to Chicago or Ann Arbor (University of Michigan) I live in Grand Rapids Mi A couple of hours from U of M, and about three hours from Chicago. After all I've read, from you and this great the Family, it seems that National Jewish is THE BEST. Please let me know what you think? Follow ups would be a little more difficult in Denver but its Doable. (is doable a word?)

From: Bruce <brucemoreland@ gmail.com>Subject: Lumping of the diseasesTo: Breathe-Support@ yahoogroups. comDate: Saturday, January 2, 2010, 10:29 AM

I found it interesting to read some more date published by theUniversity of Pittsburgh ILD center. Here are the patients who went totheir center from January 1-October 14, 2009.Now, tossing out some more interesting information (at least to me) andthat is a breakdown of the patients who went to the University ofPittsburgh ILD center from January 1-October 14 of last year.IPF UIP 574Sarcoidosis 502PF Rheumatoid Condition 277ILD Ruled Out 179Under Evaluation 179Hypersensitivity Pneumonitis 51PF of other Causes 49Other IIP's 44Pulmonary Hypertension 33Occupational Diseases 26So, only 30% of the patients had IPF UIP.I'm surprised we don't talk more here about Sarcoidosis and that makesme think either they're going to their own forum and/or its beingunderdiagnosed by many doctors. Also note that of the patients sent tothe ILD center approximately 10% were

determined not to have an ILD andanother 10% haven't been determined yet.

[Guest guest]

Well, don't assume Sarcoidosis but the issues you describe sure do say

it could be that or many other things. Certainly, I think very highly of

National Jewish. I also do think well of the University of Chicago. I

would just get somewhere and get a full diagnosis, answering all

questions you have based on all symptoms.

>

>

> From: Bruce <brucemoreland@ gmail.com>

> Subject: Lumping of the diseases

> To: Breathe-Support@ yahoogroups. com

> Date: Saturday, January 2, 2010, 10:29 AM

>

>

> Â

>

> I found it interesting to read some more date published by the

> University of Pittsburgh ILD center. Here are the patients who went to

> their center from January 1-October 14, 2009.

>

> Now, tossing out some more interesting information (at least to me)

and

> that is a breakdown of the patients who went to the University of

> Pittsburgh ILD center from January 1-October 14 of last year.

>

> IPF UIP 574

> Sarcoidosis 502

> PF Rheumatoid Condition 277

> ILD Ruled Out 179

> Under Evaluation 179

> Hypersensitivity Pneumonitis 51

> PF of other Causes 49

> Other IIP's 44

> Pulmonary Hypertension 33

> Occupational Diseases 26

>

> So, only 30% of the patients had IPF UIP.

>

> I'm surprised we don't talk more here about Sarcoidosis and that makes

> me think either they're going to their own forum and/or its being

> underdiagnosed by many doctors. Also note that of the patients sent to

> the ILD center approximately 10% were determined not to have an ILD

and

> another 10% haven't been determined yet.

>

[Guest guest]

Bob,

If you are only 3 hours from Chicago I would not hesitate another minute to call University of Chicago. Bruce has been there as have several other members. You can certainly travel to NJ in Denver if you wish but I would take advantage of your proximity to the excellent doctors at U of C.

I'm glad you are going to consult one of the "centers of excellence". It may be that you do have sarcoid but you won't know for sure until you are fully evaluated. Please don't worry about what stage you are in. There is no general agreement about stages and it's just not a useful label to put on ourselves.

I'm so glad Bruce and the rest of our "air family" have been a help to you!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Sat, January 2, 2010 2:29:05 PMSubject: Re: Lumping of the diseases

Bruce,

I think I owe you a Doctor visit fee. After one year of IPF I think you have diagnosed my decease! You may remember, that the after last visit to my Doctor he said that my lungs had improved, and the only thing I had done was to start taking NAC. Until now I have believed that I had IPF, period. After reading your post I went out and Googled "sarcoidosis". There was a site that had pictures of Sarcoidosis and it exactly showed what I have, and have been experiencing!

I have a spot on my ankle that I have had for about two years that Itches, dry skin,small raised red spots, that I have not been able to get rid of no matter how hard I tried . I have been putting Neosporin on it morning and night, to no avail. I have tried other lotions, the last one Diane (My Wife) bought was $30.00 a jar & even that didn't help. Then I noticed my elbow had the same thing and I started putting some lotion on it also. No help. I pretty much attributed it to winter dryness in Michigan.

After looking at the pictures I have no doubt in my mind its sarcoidosis. I think i will now have to rethink the prednisone treatment. It may be that pred could help the progression although the article noted it may clear up on its own after several years, but then again, it also may not. So.......... ..???

I think I am in "stage four" according to the pictures of lung X-rays they show on the website. I think its time for me to get referred to one of the educational centers. One of my sons lives in Denver so I could go there, or I could go to Chicago or Ann Arbor (University of Michigan) I live in Grand Rapids Mi A couple of hours from U of M, and about three hours from Chicago. After all I've read, from you and this great the Family, it seems that National Jewish is THE BEST. Please let me know what you think? Follow ups would be a little more difficult in Denver but its Doable. (is doable a word?)

From: Bruce <brucemoreland@ gmail.com>Subject: Lumping of the diseasesTo: Breathe-Support@ yahoogroups. comDate: Saturday, January 2, 2010, 10:29 AM

I found it interesting to read some more date published by theUniversity of Pittsburgh ILD center. Here are the patients who went totheir center from January 1-October 14, 2009.Now, tossing out some more interesting information (at least to me) andthat is a breakdown of the patients who went to the University ofPittsburgh ILD center from January 1-October 14 of last year.IPF UIP 574Sarcoidosis 502PF Rheumatoid Condition 277ILD Ruled Out 179Under Evaluation 179Hypersensitivity Pneumonitis 51PF of other Causes 49Other IIP's 44Pulmonary Hypertension 33Occupational Diseases 26So, only 30% of the patients had IPF UIP.I'm surprised we don't talk more here about Sarcoidosis and that makesme think either they're going to their own forum and/or its beingunderdiagnosed by many doctors. Also note that of the patients sent tothe ILD center approximately 10% were

determined not to have an ILD andanother 10% haven't been determined yet.

[Guest guest]

Bob,

I just starting seeing Dr. Strek at the University of Chicago last month....I had more done there in one day than in the past two years here where I live. They really go over everything. I return in Feb.

Patti Indianapolis IPF 2007

[Guest guest]

,

I have IPF AND Sarcoidosis and they were both diagnosed at the same time. I was

first diagnosed with IPF by my local Dr. I went to Mayo Clinic for further

evaluation and treatment. They said I had sarcoidosis and after a open lung

biopsy, IPF. They told me that IPF and sarcoidosis are separate diseases and one

does not cause the other.

At first, the sarcodosis was listed as my primary and IPF as my secondary

disease but during the last 4 years it has reversed and now I am diagnosed as

severe IPF. In 2003, I was evaluated for a transplant and the head of the

transplant evaluation team said that from my symptoms and tests, he would not

feel I have PF. Except the biopsy of tissue shows I do. The " ground glass

granuals " were prominant on my x-rays but gradually, the fibrosis has taken

over. I don't focus on the sarcoid much because the IPF has become primary and

the treatment has been the same for both diseases for me.

Although I am on 6-8 liters of O2 24/7, I am still working as a School Social

Worker at a middle school. I think I will have to stop sometime in the next

year as it is becoming so exhausting to work full-time.

I have not told the " general public " that I have IPF but only that I have

Sarcoid since it is not necessaarily a terminal illness. I was and are am still

afraid of the repercussions from a few of the people in the school district's

administration and how miserable they will make my life if they knew I had a

terminal illness. I will have to " come out of the closet " soon though and I will

go on medical disability when I do.

What study does anyone have that states that Sarcoid causes IPF? I would like

to read it as I was always under the impression that Sarcoid does not cause PF.

Although for me it is no big deal as I have both anyway.

Jim ,

IPF and Sarcoidosis, October 2000

Pulmonary Hypertension 2007

57 years old

> >

> >

> >

> > Subject: Lumping of the diseases

> > To: Breathe-Support

> > Date: Saturday, January 2, 2010, 10:29 AM

> >

> >

> >

> > I found it interesting to read some more date published by the

> > University of Pittsburgh ILD center. Here are the patients who went to

> > their center from January 1-October 14, 2009.

> >

> > Now, tossing out some more interesting information (at least to

> > me) and

> > that is a breakdown of the patients who went to the University of

> > Pittsburgh ILD center from January 1-October 14 of last year.

> >

> > IPF UIP 574

> > Sarcoidosis 502

> > PF Rheumatoid Condition 277

> > ILD Ruled Out 179

> > Under Evaluation 179

> > Hypersensitivity Pneumonitis 51

> > PF of other Causes 49

> > Other IIP's 44

> > Pulmonary Hypertension 33

> > Occupational Diseases 26

> >

> > So, only 30% of the patients had IPF UIP.

> >

> > I'm surprised we don't talk more here about Sarcoidosis and that makes

> > me think either they're going to their own forum and/or its being

> > underdiagnosed by many doctors. Also note that of the patients sent to

> > the ILD center approximately 10% were determined not to have an

> > ILD and

> > another 10% haven't been determined yet.

> >

> >

> >

>

[Guest guest]

JimFrom Mayo:http://www.mayoclinic.com/health/sarcoidosis/DS00251/DSECTION=complicationsLung scarring. Untreated pulmonary sarcoidosis can

lead to irreversible scarring (fibrosis) of the tissue between the air

sacs in your lungs, making it difficult to breathe.From pulmonarychannel.comhttp://www.pulmonologychannel.com/sarcoidosis/symptoms.shtml

Pulmonary infiltration and fibrosis

The mottled appearance of the lungs that shows up in a chest x-ray is

due to what is known as "pulmonary infiltration." Infiltration refers

to the abnormal presence of granulomas in the lung tissue. Depending on

how severe and extensive the pulmonary infiltration is, it can cause

various respiratory symptoms. The two most common are shortness of

breath (dyspnea) and a persistent, dry cough. About 25% of sarcoidosis

patients experience dyspnea and/or a persistent cough.

Pulmonary infiltration can lead to lung fibrosis (i.e., the hardening

and thickening of tissue) that can cause permanent scarring. Fibrosis

tends to develop in areas where the infiltration lasts a long time or

where it is especially dense. Fibrosis causes the lungs to stiffen,

making it difficult to breathe. Unfortunately, fibrosis is

irreversible. If extensive, it can cause severe dysfunction and, at its

worse, can lead to heart failure. > > >> > >> > > From: Bruce brucemoreland@> > > Subject: Lumping of the diseases> > > To: Breathe-Support > > > Date: Saturday, January 2, 2010, 10:29 AM> > >> > > > > >> > > I found it interesting to read some more date published by the> > > University of Pittsburgh ILD center. Here are the patients who went to> > > their center from January 1-October 14, 2009.> > >> > > Now, tossing out some more interesting information (at least to> > > me) and> > > that is a breakdown of the patients who went to the University of> > > Pittsburgh ILD center from January 1-October 14 of last year.> > >> > > IPF UIP 574> > > Sarcoidosis 502> > > PF Rheumatoid Condition 277> > > ILD Ruled Out 179> > > Under Evaluation 179> > > Hypersensitivity Pneumonitis 51> > > PF of other Causes 49> > > Other IIP's 44> > > Pulmonary Hypertension 33> > > Occupational Diseases 26> > >> > > So, only 30% of the patients had IPF UIP.> > >> > > I'm surprised we don't talk more here about Sarcoidosis and that makes> > > me think either they're going to their own forum and/or its being> > > underdiagnosed by many doctors. Also note that of the patients sent to> > > the ILD center approximately 10% were determined not to have an> > > ILD and> > > another 10% haven't been determined yet.> > >> > >> > >> >>

[Guest guest]

The thing to remember is that pulmonary fibrosis simply means lung scarring. The granuloma formation and inflammation of sarcoid can absolutely cause lung scarring so in that sense sarcoid can cause pulmonary fibrosis.

Now as you said, IPF and Sarcoid are two different lung conditions. One does not cause the other. IPF is a specific condition as is Sarcoid. One can have both at the same time and neither is caused by the other.

What causes so much confusion is the terminology. IPF is a specific lung condition. That is not true of pf. I have pf (lung scarring) but my actual lung condition is NSIP (non specific interstitial pneumonitis). The lung scarring or pf that I have is associated with the NSIP.

Pulmonary fibrosis refers simply to lung scarring of any cause, known or unknown. Idiopathic Pulmonary Fibrosis refers to a specific pattern of lung scarring and a specific condition. This condition is also known as UIP (usual interstitial pneumonia).

There are over 200 different conditions that cause lung scarring or pulmonary fibrosis. It is deeply unfortunate that they all get lumped together. It can be misleading and inaccurate.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Sat, January 2, 2010 6:03:57 PMSubject: Re: Lumping of the diseases

,I have IPF AND Sarcoidosis and they were both diagnosed at the same time. I was first diagnosed with IPF by my local Dr. I went to Mayo Clinic for further evaluation and treatment. They said I had sarcoidosis and after a open lung biopsy, IPF. They told me that IPF and sarcoidosis are separate diseases and one does not cause the other. At first, the sarcodosis was listed as my primary and IPF as my secondary disease but during the last 4 years it has reversed and now I am diagnosed as severe IPF. In 2003, I was evaluated for a transplant and the head of the transplant evaluation team said that from my symptoms and tests, he would not feel I have PF. Except the biopsy of tissue shows I do. The "ground glass granuals" were prominant on my x-rays but gradually, the fibrosis has taken over. I don't focus on the sarcoid much because the IPF has become primary and the treatment has been the same for both diseases for me. Although I

am on 6-8 liters of O2 24/7, I am still working as a School Social Worker at a middle school. I think I will have to stop sometime in the next year as it is becoming so exhausting to work full-time. I have not told the "general public" that I have IPF but only that I have Sarcoid since it is not necessaarily a terminal illness. I was and are am still afraid of the repercussions from a few of the people in the school district's administration and how miserable they will make my life if they knew I had a terminal illness. I will have to "come out of the closet" soon though and I will go on medical disability when I do.What study does anyone have that states that Sarcoid causes IPF? I would like to read it as I was always under the impression that Sarcoid does not cause PF. Although for me it is no big deal as I have both anyway.Jim ,IPF and Sarcoidosis, October 2000Pulmonary Hypertension 200757 years

old> >> >> > From: Bruce <brucemoreland@ ...>> > Subject: Lumping of the diseases> > To: Breathe-Support@ yahoogroups. com> > Date: Saturday, January 2, 2010, 10:29 AM> >> > > >> > I found it interesting to read some more date published by the> > University of Pittsburgh ILD center. Here are the

patients who went to> > their center from January 1-October 14, 2009.> >> > Now, tossing out some more interesting information (at least to> > me) and> > that is a breakdown of the patients who went to the University of> > Pittsburgh ILD center from January 1-October 14 of last year.> >> > IPF UIP 574> > Sarcoidosis 502> > PF Rheumatoid Condition 277> > ILD Ruled Out 179> > Under Evaluation 179> > Hypersensitivity Pneumonitis 51> > PF of other Causes 49> > Other IIP's 44> > Pulmonary Hypertension 33> > Occupational Diseases 26> >> > So, only 30% of the patients had IPF UIP.> >> > I'm surprised we don't talk more here about Sarcoidosis and that makes> > me think either they're going to their own forum and/or its being> >

underdiagnosed by many doctors. Also note that of the patients sent to> > the ILD center approximately 10% were determined not to have an> > ILD and> > another 10% haven't been determined yet.> >> >> >>

[Guest guest]

Patti,

Did you pick Dr. Strek, or is that just who you got when you made an appointment. I was wondering if it makes a difference and if patients even have a choice? Did you get your Dr to make the appointment or did you make the appointment yourself? My Dr. said he would help me get and appointment if I wanted to get a second opinion but I don't see him again until next month and I'd like to get things going. I guess I could call him and ask for a earlier appointment. I was going to get a new PFT before I went to see him. should I go ahead and get the PFT or do you think Chicago will want to get their own?

Bob

Subject: Re: Lumping of the diseasesTo: Breathe-Support Date: Saturday, January 2, 2010, 4:35 PM

Bob,

I just starting seeing Dr. Strek at the University of Chicago last month....I had more done there in one day than in the past two years here where I live. They really go over everything. I return in Feb.

Patti Indianapolis IPF 2007

[Guest guest]



Bob,

You can call yourself.....you will automatically get two appts.....the first day you are there about 4 hours.....you have a CT Scan and PFT's. They will draw 22 (yes I said 22) tubes of blood, and you will then meet for an hour with Cathy Brown. She is the head RN for the Lung Dept and she will ask you a million questions. She is great....she will not rush you and you can ask anything. Then you return two weeks later and meet together with Cathy, Dr. Strek (or whoever they give you) and another doctor (mine was a fellow in the dept).

When I called I had an appt in about a month. Take any and all records you can get your hands on.....a team of doctors will go over everything you bring and everything you have done there before you come for the second appt.

I will be there Feb 10 if you can get in that day we can meet each other.

Patti Indianapolis IPF 2007

Re: Lumping of the diseasesTo: Breathe-Support Date: Saturday, January 2, 2010, 4:35 PM

Bob,

I just starting seeing Dr. Strek at the University of Chicago last month....I had more done there in one day than in the past two years here where I live. They really go over everything. I return in Feb.

Patti Indianapolis IPF 2007

[Guest guest]

Jim

Diagnoses can often be difficult too. So you can be diagnosed as having

IPF and it later changed to just PF and then attributed to the

Sarcoidosis or it could be too entirely separate and coincidental

diseases. Similarly, if your Sarcoidosis was diagnosed first, then

fibrosis might be attributed to it but then later discovered to be IPF

and independent.

Understand even the pathology reports from biopsies do get questioned

and sometimes determined later to be wrong. I have known those who had

biopsies and those were considered definitive for UIP but then years

later the doctors decided to change the diagnosis to NSIP based on

clinical findings and ignoring the biopsy report.

As to Sarcoid causing IPF, it doesn't. By definition once a cause is

determined it is no longer IPF. But it can cause fibrosis and is either

the leading or second leading cause of lung fibrosis, depending on which

source you rely on.

> > >

> > >

> > > From: Bruce <brucemoreland@ ...>

> > > Subject: Lumping of the diseases

> > > To: Breathe-Support@ yahoogroups. com

> > > Date: Saturday, January 2, 2010, 10:29 AM

> > >

> > >

> > >

> > > I found it interesting to read some more date published by the

> > > University of Pittsburgh ILD center. Here are the patients who

went to

> > > their center from January 1-October 14, 2009.

> > >

> > > Now, tossing out some more interesting information (at least to

> > > me) and

> > > that is a breakdown of the patients who went to the University of

> > > Pittsburgh ILD center from January 1-October 14 of last year.

> > >

> > > IPF UIP 574

> > > Sarcoidosis 502

> > > PF Rheumatoid Condition 277

> > > ILD Ruled Out 179

> > > Under Evaluation 179

> > > Hypersensitivity Pneumonitis 51

> > > PF of other Causes 49

> > > Other IIP's 44

> > > Pulmonary Hypertension 33

> > > Occupational Diseases 26

> > >

> > > So, only 30% of the patients had IPF UIP.

> > >

> > > I'm surprised we don't talk more here about Sarcoidosis and that

makes

> > > me think either they're going to their own forum and/or its being

> > > underdiagnosed by many doctors. Also note that of the patients

sent to

> > > the ILD center approximately 10% were determined not to have an

> > > ILD and

> > > another 10% haven't been determined yet.

> > >

> > >

> > >

> >

>

[Guest guest]

,I'll be glad to tell you.  Your friend may not have it in her lungs.  Sarcoid is a multi system inflammatory disease which causes the destruction of the organs in the body.  In my case, I have in in my lungs, lymph glands, salivary and lacrimal glands and in my nose.  There are many people who have it much worse by having neuro-sarc, bone sarc or cardiac sarc.  I have chronic dry eye, cataracts(early stage) and just had laser surgery on both eyes to alleviate pressure from the beginning of glaucoma. My eyes hurt like there is something in them all the time. I do use prescription eye drops and over the counter too, but they still hurt most of the time.  I have chronic dry mouth which causes problems in swallowing and things get stuck.  I have to be meticulous with my dental care because not producing saliva causes health issues with the

bacteria that saliva usually helps reduce.  I use biotene toothpaste and mouthwash 3 or 4 times a day and keep sugar free candy and cough drops with me at all times. I am extremely thirsty all the time.  My nasal sarc has just reared its head. I didn't have it there when scanned 3 months ago and its there now. This is the way sarcoid seems to be.   I have sores (much like fever blisters or cold sores) around the inside and outside of my nostrils.  Sometimes wearing my oxygen canula hurts.  My bipap uses a nose piece, so many nights I can't wear it due to the pain in my nose.  My nose runs a lot but is also stuffy.  I have had antibiotics 3 times in the last 6 months for sinus infections.  Sarcoid also causes extreme fatigue.  Most days I am good for about 4 hours and am totally wiped out to where I feel like I can't hold my head up any longer..  My legs and feet swell causing aching even when sitting.  Some people have skin lesions anywhere on

the body and some are quite pronounced.  These are horrible ugly sores and I can't imagine the isolation people with them feel.People on the board for sarcoidosis tell me that those who have it in their bones or spine suffer debilitating pain even with medication.  They simply hurt all the time.  Those with it in the brain have a multitude of symptons with balance, mobility, speach etc.  I could go on and on, but I think you get the picture.  Most people diagnosed with sarcoidosis start out being told they probably have MS (as I was) or lymphoma.  Our biopsies prove otherwise. I was told by my pulmo that I would have been lucky to have lymphoma instead of sarc.Your friend may already know about the Foundation for Sarcoidosis Research, but if she doesn't, tell her to google it and join.  Just like this board, there are a lot of well informed people there and just like here a lot

of them know more than their doctors.  Or you can give her my email and have her drop me a line.Thanks for asking, hope I didn't whine too much!Roxanne, 59, South Carolina

2006 Asthma/ PF

2008 PF/ Sarcoidosis/Gerd

I pray you enough.....

From: Bruce <brucemoreland@ gmail.com>

Subject: Lumping of the diseases

To: Breathe-Support@ yahoogroups. com

Date: Saturday, January 2, 2010, 10:29 AM

 

I found it interesting to read some more date published by

the

University of Pittsburgh ILD center. Here are the patients who went to

their center from January 1-October 14, 2009.

Now, tossing out some more interesting information (at least to me) and

that is a breakdown of the patients who went to the University of

Pittsburgh ILD center from January 1-October 14 of last year.

IPF UIP 574

Sarcoidosis 502

PF Rheumatoid Condition 277

ILD Ruled Out 179

Under Evaluation 179

Hypersensitivity Pneumonitis 51

PF of other Causes 49

Other IIP's 44

Pulmonary Hypertension 33

Occupational Diseases 26

So, only 30% of the patients had IPF UIP.

I'm surprised we don't talk more here about Sarcoidosis and that makes

me think either they're going to their own forum and/or its being

underdiagnosed by many doctors. Also note that of the patients sent to

the ILD center approximately 10% were determined not to have an ILD and

another 10% haven't been determined yet.

[Guest guest]

As to a PFT, Chicago will absolutely do their own as well as their own

CT's and other labs and tests.

I saw Dr. Strek as well, but the choice was made by Cathy Brown, the

site coordinator, and was based on the information I gave her. She chose

Dr. Strek because she suspected a possible connective tissue disease and

connection from the information and Dr. Strek is their expert in those

relationships.

>

>

> From: Patti napa73@...

> Subject: Re: Lumping of the diseases

> To: Breathe-Support

> Date: Saturday, January 2, 2010, 4:35 PM

>

>

> Â

>

>

>

>

> Bob,

> I just starting seeing Dr. Strek at the University of Chicago

last month....I had more done there in one day than in the past two

years here where I live. They really go over everything. I return

in Feb.

> Â

>

> Patti  Indianapolis  IPF 2007

>

[Guest guest]

,I forgot about the meds----I too take methotrexate, plaquenil and prednesone.  I have a problem with vitamin D (another long story about sarcoid) I take folic acid, naproxen , anti depressants and anti anxiety meds.  Use prescription cough syrup and drops and take calcium and omeprazole .  I use prescription eye drops and supplemental 02.Roxanne, 59, South Carolina

2006 Asthma/ PF

2008 PF/ Sarcoidosis/Gerd

I pray you enough.....

From: Bruce <brucemoreland@ gmail.com>

Subject: Lumping of the diseases

To: Breathe-Support@ yahoogroups. com

Date: Saturday, January 2, 2010, 10:29 AM

 

I found it interesting to read some more date published by

the

University of Pittsburgh ILD center. Here are the patients who went to

their center from January 1-October 14, 2009.

Now, tossing out some more interesting information (at least to me) and

that is a breakdown of the patients who went to the University of

Pittsburgh ILD center from January 1-October 14 of last year.

IPF UIP 574

Sarcoidosis 502

PF Rheumatoid Condition 277

ILD Ruled Out 179

Under Evaluation 179

Hypersensitivity Pneumonitis 51

PF of other Causes 49

Other IIP's 44

Pulmonary Hypertension 33

Occupational Diseases 26

So, only 30% of the patients had IPF UIP.

I'm surprised we don't talk more here about Sarcoidosis and that makes

me think either they're going to their own forum and/or its being

underdiagnosed by many doctors. Also note that of the patients sent to

the ILD center approximately 10% were determined not to have an ILD and

another 10% haven't been determined yet.

[Guest guest]

Roxanne

While everyone with Sarcoid does not have lung fibrosis, I have read

numbers estimating as high as 90% do or will. How does this compare with

what you see on the Sarcoidosis forum?

As someone with a Vitamin D shortage I am curious about your long story

on Vitamin D.

>

>

>

> From: Bruce <brucemoreland@ gmail.com>

>

> Subject: Lumping of the diseases

>

> To: Breathe-Support@ yahoogroups. com

>

> Date: Saturday, January 2, 2010, 10:29 AM

>

>

>

> Â

>

> I found it interesting to read some more date published by

> the

>

> University of Pittsburgh ILD center. Here are the patients who went to

>

> their center from January 1-October 14, 2009.

>

>

>

> Now, tossing out some more interesting information (at least to me)

and

>

> that is a breakdown of the patients who went to the University of

>

> Pittsburgh ILD center from January 1-October 14 of last year.

>

>

>

> IPF UIP 574

>

> Sarcoidosis 502

>

> PF Rheumatoid Condition 277

>

> ILD Ruled Out 179

>

> Under Evaluation 179

>

> Hypersensitivity Pneumonitis 51

>

> PF of other Causes 49

>

> Other IIP's 44

>

> Pulmonary Hypertension 33

>

> Occupational Diseases 26

>

>

>

> So, only 30% of the patients had IPF UIP.

>

>

>

> I'm surprised we don't talk more here about Sarcoidosis and that makes

>

> me think either they're going to their own forum and/or its being

>

> underdiagnosed by many doctors. Also note that of the patients sent to

>

> the ILD center approximately 10% were determined not to have an ILD

and

>

> another 10% haven't been determined yet.

>

[Guest guest]

Hi ,I am so sorry that you believe you have sarcoid.  It is not a fun disease (not many are but).,.neither is pf.  I have an appointment at MUSC in ton SC Jan 12 to see their specialist in sarcoidosis.  Although I Have a pulmo that seems very knowledgeable about sarcoid, I am eager to see a specialist both in ILD and sarcoid and I am hoping he has some new ideas as my sarcoid is doing what it does----spreading..As sarcoid is an inflammatory disease, prednesone is usually the first method of treatment.I hate you'll have to take the stuff, but it may work for you and the good news is that you'll know fairly quickly if it does not.Good luck and keep us posted.Roxanne, 59, South Carolina

2006 Asthma/ PF

2008 PF/ Sarcoidosis/Gerd

I pray you enough.....

From: Bruce <brucemoreland@ gmail.com>Subject: Lumping of the diseasesTo: Breathe-Support@ yahoogroups. comDate: Saturday, January 2, 2010, 10:29 AM

 

I found it interesting to read some more date published by theUniversity of Pittsburgh ILD center. Here are the patients who went totheir center from January 1-October 14, 2009.Now, tossing out some more interesting information (at least to me) andthat is a breakdown of the patients who went to the University ofPittsburgh ILD center from January 1-October 14 of last year.IPF UIP 574Sarcoidosis 502PF Rheumatoid Condition 277ILD Ruled Out 179Under Evaluation 179Hypersensitivity Pneumonitis 51PF of other Causes 49Other IIP's 44Pulmonary Hypertension 33Occupational Diseases 26So, only 30% of the patients had IPF UIP.I'm surprised we don't talk more here about Sarcoidosis and that makesme think either they're going to their own forum and/or its beingunderdiagnosed by many doctors. Also note that of the patients sent tothe ILD center approximately 10% were

determined not to have an ILD andanother 10% haven't been determined yet.

[Guest guest]

Thanks for such a good overview of sarcoidosis. Only someone who actually deals with it day in and day out can give such a complete picture. Thanks again!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Sat, January 2, 2010 7:19:02 PMSubject: Re: Lumping of the diseases

,

I'll be glad to tell you. Your friend may not have it in her lungs. Sarcoid is a multi system inflammatory disease which causes the destruction of the organs in the body. In my case, I have in in my lungs, lymph glands, salivary and lacrimal glands and in my nose. There are many people who have it much worse by having neuro-sarc, bone sarc or cardiac sarc. I have chronic dry eye, cataracts(early stage) and just had laser surgery on both eyes to alleviate pressure from the beginning of glaucoma. My eyes hurt like there is something in them all the time. I do use prescription eye drops and over the counter too, but they still hurt most of the time. I have chronic dry mouth which causes problems in swallowing and things get stuck. I have to be meticulous with my dental care because not producing saliva causes health issues with the bacteria that saliva usually helps reduce. I use biotene toothpaste and

mouthwash 3 or 4 times a day and keep sugar free candy and cough drops with me at all times. I am extremely thirsty all the time. My nasal sarc has just reared its head. I didn't have it there when scanned 3 months ago and its there now. This is the way sarcoid seems to be. I have sores (much like fever blisters or cold sores) around the inside and outside of my nostrils. Sometimes wearing my oxygen canula hurts. My bipap uses a nose piece, so many nights I can't wear it due to the pain in my nose. My nose runs a lot but is also stuffy. I have had antibiotics 3 times in the last 6 months for sinus infections. Sarcoid also causes extreme fatigue. Most days I am good for about 4 hours and am totally wiped out to where I feel like I can't hold my head up any longer.. My legs and feet swell causing aching even when sitting. Some people have skin lesions anywhere on the body and some are quite

pronounced. These are horrible ugly sores and I can't imagine the isolation people with them feel.

People on the board for sarcoidosis tell me that those who have it in their bones or spine suffer debilitating pain even with medication. They simply hurt all the time. Those with it in the brain have a multitude of symptons with balance, mobility, speach etc. I could go on and on, but I think you get the picture. Most people diagnosed with sarcoidosis start out being told they probably have MS (as I was) or lymphoma. Our biopsies prove otherwise. I was told by my pulmo that I would have been lucky to have lymphoma instead of sarc.

Your friend may already know about the Foundation for Sarcoidosis Research, but if she doesn't, tell her to google it and join. Just like this board, there are a lot of well informed people there and just like here a lot of them know more than their doctors. Or you can give her my email and have her drop me a line.

Thanks for asking, hope I didn't whine too much!

Roxanne, 59, South Carolina2006 Asthma/ PF2008 PF/ Sarcoidosis/ GerdI pray you enough.....

From: Bruce <brucemoreland@ gmail.com>Subject: Lumping of the diseasesTo: Breathe-Support@ yahoogroups. comDate: Saturday, January 2, 2010, 10:29 AM

I found it interesting to read some more date published by theUniversity of Pittsburgh ILD center. Here are the patients who went totheir center from January 1-October 14, 2009.Now, tossing out some more interesting information (at least to me) andthat is a breakdown of the patients who went to the University ofPittsburgh ILD center from January 1-October 14 of last year.IPF UIP 574Sarcoidosis 502PF Rheumatoid Condition 277ILD Ruled Out 179Under Evaluation 179Hypersensitivity Pneumonitis 51PF of other Causes 49Other IIP's 44Pulmonary Hypertension 33Occupational Diseases 26So, only 30% of the patients had IPF UIP.I'm surprised we don't talk more here about Sarcoidosis and that makesme think either they're going to their own forum and/or its beingunderdiagnosed by many doctors. Also note that of the patients sent tothe ILD center approximately 10% were

determined not to have an ILD andanother 10% haven't been determined yet.

[Guest guest]

Roxanne,

I'm not positive I have Sarcoid because I know very little about it so far. I intend to learn as much as I can about it as quickly as possible because my self diagnosis tells me I have it.. One good thing I read so far is that people don't usually die from Sarcoidosis. However, PF is another story, and I definatly have PF. I am like most here, ok setting down but, sat drops like a rock upon movement. Usually around two to three liters is needed when just walking, cooking etc. four and a half to five liters while exercising.

I am anxious to find out what you learn from the specialist.

Bob 70, IPF? 1/09, 5 by passes 7/01

From: Bruce <brucemoreland@ gmail.com>Subject: Lumping of the diseasesTo: Breathe-Support@ yahoogroups. comDate: Saturday, January 2, 2010, 10:29 AM

I found it interesting to read some more date published by theUniversity of Pittsburgh ILD center. Here are the patients who went totheir center from January 1-October 14, 2009.Now, tossing out some more interesting information (at least to me) andthat is a breakdown of the patients who went to the University ofPittsburgh ILD center from January 1-October 14 of last year.IPF UIP 574Sarcoidosis 502PF Rheumatoid Condition 277ILD Ruled Out 179Under Evaluation 179Hypersensitivity Pneumonitis 51PF of other Causes 49Other IIP's 44Pulmonary Hypertension 33Occupational Diseases 26So, only 30% of the patients had IPF UIP.I'm surprised we don't talk more here about Sarcoidosis and that makesme think either they're going to their own forum and/or its beingunderdiagnosed by many doctors. Also note that of the patients sent tothe ILD center approximately 10% were

determined not to have an ILD andanother 10% haven't been determined yet.

[Guest guest]

MB and Bruce,Thank you both for answering Jim.  I have been sitting here trying to compose a reply but you both are much better at this.  Jim, I was originally diagnosed as having IPF.  After biopsy, my diagnosis was changed to PF (pulmonary fibrosis) as result of the inflammation of Sarcoidosis. And unfortunately for me, my sarcoid is still active and spreading after more than 3 years and my fibrosis is worsening due to the sarcoid.Roxanne, 59, South Carolina

2006 Asthma/ PF

2008 PF/ Sarcoidosis/Gerd

I pray you enough.....Subject: Re: Lumping of the diseasesTo: Breathe-Support Date: Saturday, January 2, 2010, 7:18 PM

 

Jim

Diagnoses can often be difficult too. So you can be diagnosed as having

IPF and it later changed to just PF and then attributed to the

Sarcoidosis or it could be too entirely separate and coincidental

diseases. Similarly, if your Sarcoidosis was diagnosed first, then

fibrosis might be attributed to it but then later discovered to be IPF

and independent.

Understand even the pathology reports from biopsies do get questioned

and sometimes determined later to be wrong. I have known those who had

biopsies and those were considered definitive for UIP but then years

later the doctors decided to change the diagnosis to NSIP based on

clinical findings and ignoring the biopsy report.

As to Sarcoid causing IPF, it doesn't. By definition once a cause is

determined it is no longer IPF. But it can cause fibrosis and is either

the leading or second leading cause of lung fibrosis, depending on which

source you rely on.

> > >

> > >

> > > From: Bruce <brucemoreland@ ...>

> > > Subject: Lumping of the diseases

> > > To: Breathe-Support@ yahoogroups. com

> > > Date: Saturday, January 2, 2010, 10:29 AM

> > >

> > >

> > >

> > > I found it interesting to read some more date published by the

> > > University of Pittsburgh ILD center. Here are the patients who

went to

> > > their center from January 1-October 14, 2009.

> > >

> > > Now, tossing out some more interesting information (at least to

> > > me) and

> > > that is a breakdown of the patients who went to the University of

> > > Pittsburgh ILD center from January 1-October 14 of last year.

> > >

> > > IPF UIP 574

> > > Sarcoidosis 502

> > > PF Rheumatoid Condition 277

> > > ILD Ruled Out 179

> > > Under Evaluation 179

> > > Hypersensitivity Pneumonitis 51

> > > PF of other Causes 49

> > > Other IIP's 44

> > > Pulmonary Hypertension 33

> > > Occupational Diseases 26

> > >

> > > So, only 30% of the patients had IPF UIP.

> > >

> > > I'm surprised we don't talk more here about Sarcoidosis and that

makes

> > > me think either they're going to their own forum and/or its being

> > > underdiagnosed by many doctors. Also note that of the patients

sent to

> > > the ILD center approximately 10% were determined not to have an

> > > ILD and

> > > another 10% haven't been determined yet.

> > >

> > >

> > >

> >

>

[Guest guest]

Wow Bruce, you have really handed me a loaded gun .My research (yeah, I have done some ) indicates that sarcoid is generally found in the lungs in the majority of cases.  Many of the people on the board do have lung involvement, but what I find interesting is that hardly any speak of fibrosis!  Most are confused and scared and in pain and have to contend with doctors who don't know anything about this disease. I believe that most of those who post have other types of sarcoid---skeletal, neuro, other organs and skin.Now as to the vitamin D problem I am still quite confused with it so I'll just attach a post from the board that explains it far better than I could.  My pcp always tells me I am Vit D deficient and wants me to take supplements.  My pulmo tells me NOT to take supplements

until I see the specialist in ton. Roxanne, 59, South Carolina

2006 Asthma/ PF

2008 PF/ Sarcoidosis/Gerd

I pray you enough.....Subject: Re: Lumping of the diseasesTo: Breathe-Support Date: Saturday, January 2, 2010, 7:42 PM

 

Roxanne

While everyone with Sarcoid does not have lung fibrosis, I have read

numbers estimating as high as 90% do or will. How does this compare with

what you see on the Sarcoidosis forum?

As someone with a Vitamin D shortage I am curious about your long story

on Vitamin D.

>

>

>

> From: Bruce <brucemoreland@ gmail.com>

>

> Subject: Lumping of the diseases

>

> To: Breathe-Support@ yahoogroups. com

>

> Date: Saturday, January 2, 2010, 10:29 AM

>

>

>

> Â

>

> I found it interesting to read some more date published by

> the

>

> University of Pittsburgh ILD center. Here are the patients who went to

>

> their center from January 1-October 14, 2009.

>

>

>

> Now, tossing out some more interesting information (at least to me)

and

>

> that is a breakdown of the patients who went to the University of

>

> Pittsburgh ILD center from January 1-October 14 of last year.

>

>

>

> IPF UIP 574

>

> Sarcoidosis 502

>

> PF Rheumatoid Condition 277

>

> ILD Ruled Out 179

>

> Under Evaluation 179

>

> Hypersensitivity Pneumonitis 51

>

> PF of other Causes 49

>

> Other IIP's 44

>

> Pulmonary Hypertension 33

>

> Occupational Diseases 26

>

>

>

> So, only 30% of the patients had IPF UIP.

>

>

>

> I'm surprised we don't talk more here about Sarcoidosis and that makes

>

> me think either they're going to their own forum and/or its being

>

> underdiagnosed by many doctors. Also note that of the patients sent to

>

> the ILD center approximately 10% were determined not to have an ILD

and

>

> another 10% haven't been determined yet.

>

2 of 2 File(s)

Test for Vit D def in Sarcoid.rtf

For Dr. Mathias--Vit D problem?.rtf

[Guest guest]

Roxanne, Thank you so much for so

much information.  My friend has lung involvement with her sarcoid .

It is one of the reasons she moved here ( 55+ one floor ranch style

homes). Steps are a problem for her too.

She has the fatigue too.  I will tell her about the sarcoid group.

Thanks a lot.

I have the dry eye/mouth issues because of medications and I also use

Biotene products.

There is an eye drop ( Refresh Plus) that I find really works daytime

and they also have a gel formula

for night time that is an absolute G-d send.

Happy New Year and thanks again for sharing.

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

 

 

Roxanne Wooten wrote:

 

,

I'll be glad to tell you.  Your friend may not have it in

her lungs.  Sarcoid is a multi system inflammatory disease which causes

the destruction of the organs in the body.  In my case, I have in in my

lungs, lymph glands, salivary and lacrimal glands and in my nose.

 There are many people who have it much worse by having neuro-sarc,

bone sarc or cardiac sarc.  I have chronic dry eye, cataracts(early

stage) and just had laser surgery on both eyes to alleviate pressure

from the beginning of glaucoma. My eyes hurt like there is something in

them all the time. I do use prescription eye drops and over the counter

too, but they still hurt most of the time.  I have chronic dry mouth

which causes problems in swallowing and things get stuck.  I have to be

meticulous with my dental care because not producing saliva causes

health issues with the bacteria that saliva usually helps reduce.  I

use biotene toothpaste and mouthwash 3 or 4 times a day and keep sugar

free candy and cough drops with me at all times. I am extremely thirsty

all the time.  My nasal sarc has just reared its head. I didn't have it

there when scanned 3 months ago and its there now. This is the way

sarcoid seems to be.   I have sores (much like fever blisters or cold

sores) around the inside and outside of my nostrils.  Sometimes wearing

my oxygen canula hurts.  My bipap uses a nose piece, so many nights I

can't wear it due to the pain in my nose.  My nose runs a lot but is

also stuffy.  I have had antibiotics 3 times in the last 6 months for

sinus infections.  Sarcoid also causes extreme fatigue.  Most days I am

good for about 4 hours and am totally wiped out to where I feel like I

can't hold my head up any longer..  My legs and feet swell causing

aching even when sitting.  Some people have skin lesions anywhere on

the body and some are quite pronounced.  These are horrible ugly sores

and I can't imagine the isolation people with them feel.

People on the board for sarcoidosis tell me that those who

have it in their bones or spine suffer debilitating pain even with

medication.  They simply hurt all the time.  Those with it in the brain

have a multitude of symptons with balance, mobility, speach etc.  I

could go on and on, but I think you get the picture.  Most people

diagnosed with sarcoidosis start out being told they probably have MS

(as I was) or lymphoma.  Our biopsies prove otherwise. I was told by my

pulmo that I would have been lucky to have lymphoma instead of sarc.

Your friend may already know about the Foundation for

Sarcoidosis Research, but if she doesn't, tell her to google it and

join.  Just like this board, there are a lot of well informed people

there and just like here a lot of them know more than their doctors.

 Or you can give her my email and have her drop me a line.

Thanks for asking, hope I didn't whine too much!

Roxanne, 59, South Carolina

2006 Asthma/ PF

2008 PF/ Sarcoidosis/Gerd

I pray you enough.....

From: Bruce <brucemoreland@ gmail.com>

Subject: Lumping of the diseases

To: Breathe-Support@ yahoogroups. com

Date: Saturday, January 2, 2010, 10:29 AM

 

I found it interesting to read some more date

published by

the

University of Pittsburgh ILD center. Here are the patients who went to

their center from January 1-October 14, 2009.

Now, tossing out some more interesting information (at least to me) and

that is a breakdown of the patients who went to the University of

Pittsburgh ILD center from January 1-October 14 of last year.

IPF UIP 574

Sarcoidosis 502

PF Rheumatoid Condition 277

ILD Ruled Out 179

Under Evaluation 179

Hypersensitivity Pneumonitis 51

PF of other Causes 49

Other IIP's 44

Pulmonary Hypertension 33

Occupational Diseases 26

So, only 30% of the patients had IPF UIP.

I'm surprised we don't talk more here about Sarcoidosis and that makes

me think either they're going to their own forum and/or its being

underdiagnosed by many doctors. Also note that of the patients sent to

the ILD center approximately 10% were determined not to have an ILD and

another 10% haven't been determined yet.

[Guest guest]

You are very welcomed.  We are all dealing with chronic illness and as Peggy says, I hate this disease!Roxanne, 59, South Carolina

2006 Asthma/ PF

2008 PF/ Sarcoidosis/Gerd

I pray you enough.....

From: Bruce <brucemoreland@ gmail.com>Subject: Lumping of the diseasesTo: Breathe-Support@ yahoogroups. comDate: Saturday, January 2, 2010, 10:29 AM

 

I found it interesting to read some more date published by theUniversity of Pittsburgh ILD center. Here are the patients who went totheir center from January 1-October 14, 2009.Now, tossing out some more interesting information (at least to me) andthat is a breakdown of the patients who went to the University ofPittsburgh ILD center from January 1-October 14 of last year.IPF UIP 574Sarcoidosis 502PF Rheumatoid Condition 277ILD Ruled Out 179Under Evaluation 179Hypersensitivity Pneumonitis 51PF of other Causes 49Other IIP's 44Pulmonary Hypertension 33Occupational Diseases 26So, only 30% of the patients had IPF UIP.I'm surprised we don't talk more here about Sarcoidosis and that makesme think either they're going to their own forum and/or its beingunderdiagnosed by many doctors. Also note that of the patients sent tothe ILD center approximately 10% were

determined not to have an ILD andanother 10% haven't been determined yet.

[Guest guest]

I'll post my results when I get home from ton.As far as not many people dying from sarcoid, the most recent and well known include Bernie Mac, Goulet and Evil Kenevil .  The problem with sarcoid is that most of the people who die do so from respiratory complications---does this sound familiar?  Pneumonia is probably the most common cause of death in those with pulmonary sarcoid.  I don't know about death rates among other types of sarcoid, but my pulmo advises me that I am an extremely high risk patient due to my sarcoid.I'll hope your PF diagnoses will not include a sarcoid diagnosis.  Keep trying to get to a center of excellence.  I have seen many people here glad they went.Roxanne, 59, South Carolina

2006 Asthma/ PF

2008 PF/ Sarcoidosis/Gerd

I pray you enough.....

From: Bruce <brucemoreland@ gmail.com>Subject: Lumping of the diseasesTo: Breathe-Support@ yahoogroups. comDate: Saturday, January 2, 2010, 10:29 AM

 

I found it interesting to read some more date published by theUniversity of Pittsburgh ILD center. Here are the patients who went totheir center from January 1-October 14, 2009.Now, tossing out some more interesting information (at least to me) andthat is a breakdown of the patients who went to the University ofPittsburgh ILD center from January 1-October 14 of last year.IPF UIP 574Sarcoidosis 502PF Rheumatoid Condition 277ILD Ruled Out 179Under Evaluation 179Hypersensitivity Pneumonitis 51PF of other Causes 49Other IIP's 44Pulmonary Hypertension 33Occupational Diseases 26So, only 30% of the patients had IPF UIP.I'm surprised we don't talk more here about Sarcoidosis and that makesme think either they're going to their own forum and/or its beingunderdiagnosed by many doctors. Also note that of the patients sent tothe ILD center approximately 10% were

determined not to have an ILD andanother 10% haven't been determined yet.

[Guest guest]

Roxanne

Thanks for the Vitamin D information as I know I and others here have

been found to be deficient and I'm on 50,000 i.u. of Vitamin D per week

just as in your attachments. Mine was found to be low by my

nephrologist. Now, I've not been diagnosed as having Sarcoid but then

again I do have many elements of it. So, at the least, gives some pause

and thought to discuss with my nephrologist when I see her this month.

Also, tells me that I may want the 1,25D run when she does her labs,

just to see what it indicates.

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> > From: Bruce <brucemoreland@ gmail.com>

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> > Subject: Lumping of the diseases

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> > To: Breathe-Support@ yahoogroups. com

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> > Date: Saturday, January 2, 2010, 10:29 AM

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> > I found it interesting to read some more date published by

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> > University of Pittsburgh ILD center. Here are the patients who went

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> > their center from January 1-October 14, 2009.

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> > Now, tossing out some more interesting information (at least to me)

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> > that is a breakdown of the patients who went to the University of

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> > Pittsburgh ILD center from January 1-October 14 of last year.

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> > IPF UIP 574

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> > Sarcoidosis 502

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> > PF Rheumatoid Condition 277

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> > ILD Ruled Out 179

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> > Under Evaluation 179

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> > Hypersensitivity Pneumonitis 51

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> > PF of other Causes 49

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> > Other IIP's 44

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> > Pulmonary Hypertension 33

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> > Occupational Diseases 26

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> > So, only 30% of the patients had IPF UIP.

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> > I'm surprised we don't talk more here about Sarcoidosis and that

makes

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> > me think either they're going to their own forum and/or its being

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> > underdiagnosed by many doctors. Also note that of the patients sent

to

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> > the ILD center approximately 10% were determined not to have an ILD

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> > another 10% haven't been determined yet.

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