Re: Beth or anyone who may know - Dermatomyositis

[Guest guest]

Dave,

Having UIP does not automatically rule out having a connective tissue disease. If you have UIP and a connective tissue disease what that means is that you don't have IPF because the cause of the UIP is now known. Does that make sense? Dave from what I've read and been told you are young for true IPF. It does happen that someone in their 40's gets IPF but it is rare. What is more common is that when someone in their 30's 40's or 50's gets a fibrotic lung disease thit is unrelated to exposure to some kind of toxin or allergen, there is often an underlying connective tissue/auto immune disease. Here is a link to an article in the Journal of Rare Diseases:

http://www.ojrd.com/content/3/1/8

The average age of onset of IPF is 66. That's 23 years older than you are now. In your shoes I'd be aggressively persuing more information and want to completely rule out connective tissue diseases. Some might ask (I hear you Peggy) why it matters so much. Well it matters because connective tissue/auto immune diseases have treatments and those treatments can slow the progress of the fibrosis. For me it's worth knowing what's going on with my body.

It's not surprising that no one asked you about rashes or other skin conditions, no one asked me either until I was at Duke. In all fairness though I was on so much prednisone for such a long time that there wasn't any test that was going to pick up any auto immune condition. I had to be completely off the prednisone for more than 6 months before the "mechanics hand" started to show up again.

If it were me Dave, I would ask for a referral to a rheumatologist. You might even want to see if there is someone you can see at Columbia when you go in March. We are talking about the same NY Pres/Columbia in Manhattan. I saw Simonelli MD PhD there beginning in August of 06 through November of 07 when I moved to North Carolina. If I still lived in NY, I'd still be seeing Dr. Simonelli. I think very highly of him and his staff.

I hope some of that helped a bit. This is all my opinion and it's worth what you paid for it. Don't substitue my judgement for your own, I'm just sharing my point of view.

Please keep me posted on how you're doing!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Mon, January 25, 2010 1:31:08 PMSubject: Beth or anyone who may know - Dermatomyositis

Hi Beth,I read your post on your Dermatomyositis. I also get some rashes on my arms, chest, and over my eyes - bridge of nose and eyebrow area. I think I have had evey blood test, but my pulmo Dr. never even checked for rashes or asked about any. My VATS came back UIP, so does that mean i cant have a connective tissue disease as well? As I said in a previous post that now that my biopsy came back my Pulmo Dr. has no interest in seeing me unless I go on 1 of her trials, (Dr. Glassberg - University of Miami). I am going to a new Pulmo dude tomorrow that was recommended by my PCP. Should I automatically ask him for a referral to see a Ruemotologist or some other specialist who may check other causes or because I have UIP than it does not matter??I also read that you went to Columbia when you were first sick. Was this NY Pres./ Columbia Hospital in NY? I have an appointment with Dr. Lederer on 3/4 for a second opinion and for Lung

Transplant Evaluation. I will also see Dr. Sonnet the head Surgeon of the TX unit. He is the Dr. that is doing the Web Seminar on Thursday night.Thanks,Dave, 43, Miami, UIP/IPF 11/09

[Guest guest]

Dave, I have just been to NY Pres/Columbia Hospital and saw basically the same doctor's that you are going to see. Dr. Sonnet was not available as I saw another surgeon and they were all very informative. You had VATS done, right? Make sure you bring your biopsy slides with you along with any CT's that you have. I was diagnosed with UIP also but it appears that there is questions by two the of the dr's that may change the diagnosis. To: Breathe-Support Sent: Mon, January 25, 2010 3:52:49 PMSubject: Re: Beth or anyone who may know - Dermatomyositis Dave, Having UIP does not automatically rule out having a connective tissue disease. If you have UIP and a connective tissue disease what that means is that you don't have IPF because the cause of the UIP is now known.. Does that

make sense? Dave from what I've read and been told you are young for true IPF. It does happen that someone in their 40's gets IPF but it is rare. What is more common is that when someone in their 30's 40's or 50's gets a fibrotic lung disease thit is unrelated to exposure to some kind of toxin or allergen, there is often an underlying connective tissue/auto immune disease. Here is a link to an article in the Journal of Rare Diseases: http://www.ojrd. com/content/ 3/1/8 The average age of onset of IPF is 66. That's 23 years older than you are now. In your shoes I'd be aggressively persuing more information and want to completely rule out connective tissue diseases. Some might ask (I hear you Peggy) why it matters so much. Well it matters because connective tissue/auto immune diseases have treatments and those treatments can slow the

progress of the fibrosis. For me it's worth knowing what's going on with my body. It's not surprising that no one asked you about rashes or other skin conditions, no one asked me either until I was at Duke. In all fairness though I was on so much prednisone for such a long time that there wasn't any test that was going to pick up any auto immune condition. I had to be completely off the prednisone for more than 6 months before the "mechanics hand" started to show up again. If it were me Dave, I would ask for a referral to a rheumatologist. You might even want to see if there is someone you can see at Columbia when you go in March. We are talking about the same NY Pres/Columbia in Manhattan. I saw Simonelli MD PhD there beginning in August of 06 through November of 07 when I moved to North Carolina. If I still lived in NY, I'd still be seeing Dr.

Simonelli. I think very highly of him and his staff. I hope some of that helped a bit. This is all my opinion and it's worth what you paid for it. Don't substitue my judgement for your own, I'm just sharing my point of view. Please keep me posted on how you're doing! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: davegreg11 <davegreg11 (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Mon, January 25, 2010 1:31:08 PMSubject: Beth or anyone who may know - Dermatomyositis Hi Beth,I read your post on your Dermatomyositis. I also get some rashes on my arms, chest, and over my eyes - bridge of nose and eyebrow area. I think I have had evey blood test, but my pulmo Dr. never even checked for rashes or asked about any. My VATS came back UIP, so does that mean i cant have a connective tissue disease as

well? As I said in a previous post that now that my biopsy came back my Pulmo Dr. has no interest in seeing me unless I go on 1 of her trials, (Dr. Glassberg - University of Miami). I am going to a new Pulmo dude tomorrow that was recommended by my PCP. Should I automatically ask him for a referral to see a Ruemotologist or some other specialist who may check other causes or because I have UIP than it does not matter??I also read that you went to Columbia when you were first sick. Was this NY Pres./ Columbia Hospital in NY? I have an appointment with Dr. Lederer on 3/4 for a second opinion and for Lung Transplant Evaluation. I will also see Dr. Sonnet the head Surgeon of the TX unit. He is the Dr. that is doing the Web Seminar on Thursday night.Thanks,Dave, 43, Miami, UIP/IPF 11/09

[Guest guest]

Thanks, Beth, , Dyane and Bruce for your thoughts.

I have not been on any drugs at all yet as they have not been warrented yet. So

I atleast I dont have to worry about the steriods screwing up any tests. I plan

on brings all my test results and VATS slides and CAT Scan Discs with me to NY.

I already have a file folder about 2 1/2 inches thick with results, ect.

Maybe this fresh look at everything may lead to some answers.

Dave

>

> Dave, I have just been to NY Pres/Columbia Hospital and saw basically the same

doctor's that you are going to see. Dr. Sonnet was not available as I saw

another surgeon and they were all very informative. You had VATS done, right?

Make sure you bring your biopsy slides with you along with any CT's that you

have. I was diagnosed with UIP also but it appears that there is questions by

two the of the dr's that may change the diagnosis.

>

>

>

>

>

> ________________________________

>

> To: Breathe-Support

> Sent: Mon, January 25, 2010 3:52:49 PM

> Subject: Re: Beth or anyone who may know -

Dermatomyositis

>

>

> Dave,

> Having UIP does not automatically rule out having a connective tissue disease.

If you have UIP and a connective tissue disease what that means is that you

don't have IPF because the cause of the UIP is now known. Does that make sense?

Dave from what I've read and been told you are young for true IPF. It does

happen that someone in their 40's gets IPF but it is rare. What is more common

is that when someone in their 30's 40's or 50's gets a fibrotic lung disease

thit is unrelated to exposure to some kind of toxin or allergen, there is often

an underlying connective tissue/auto immune disease. Here is a link to an

article in the Journal of Rare Diseases:

> http://www.ojrd. com/content/ 3/1/8

>

> The average age of onset of IPF is 66. That's 23 years older than you are

now.. In your shoes I'd be aggressively persuing more information and want to

completely rule out connective tissue diseases. Some might ask (I hear you

Peggy) why it matters so much. Well it matters because connective tissue/auto

immune diseases have treatments and those treatments can slow the progress of

the fibrosis. For me it's worth knowing what's going on with my body.

>

> It's not surprising that no one asked you about rashes or other skin

conditions, no one asked me either until I was at Duke. In all fairness though I

was on so much prednisone for such a long time that there wasn't any test that

was going to pick up any auto immune condition. I had to be completely off the

prednisone for more than 6 months before the " mechanics hand " started to show up

again.

>

> If it were me Dave, I would ask for a referral to a rheumatologist. You might

even want to see if there is someone you can see at Columbia when you go in

March. We are talking about the same NY Pres/Columbia in Manhattan. I saw

Simonelli MD PhD there beginning in August of 06 through November of 07 when I

moved to North Carolina. If I still lived in NY, I'd still be seeing Dr.

Simonelli. I think very highly of him and his staff.

>

> I hope some of that helped a bit. This is all my opinion and it's worth what

you paid for it. Don't substitue my judgement for your own, I'm just sharing my

point of view.

>

> Please keep me posted on how you're doing!

>

> Beth

> Moderator

> FibroticNSIP 06/06 Dermatomyositis 11/08

>

>

>

>

>

>

> ________________________________

> From: davegreg11 <davegreg11 (AT) yahoo (DOT) com>

> To: Breathe-Support@ yahoogroups. com

> Sent: Mon, January 25, 2010 1:31:08 PM

> Subject: Beth or anyone who may know - Dermatomyositis

>

>

> Hi Beth,

>

> I read your post on your Dermatomyositis. I also get some rashes on my arms,

chest, and over my eyes - bridge of nose and eyebrow area. I think I have had

evey blood test, but my pulmo Dr. never even checked for rashes or asked about

any. My VATS came back UIP, so does that mean i cant have a connective tissue

disease as well? As I said in a previous post that now that my biopsy came back

my Pulmo Dr. has no interest in seeing me unless I go on 1 of her trials, (Dr.

Glassberg - University of Miami). I am going to a new Pulmo dude tomorrow that

was recommended by my PCP. Should I automatically ask him for a referral to see

a Ruemotologist or some other specialist who may check other causes or because I

have UIP than it does not matter??

>

> I also read that you went to Columbia when you were first sick. Was this NY

Pres./ Columbia Hospital in NY? I have an appointment with Dr. Lederer on 3/4

for a second opinion and for Lung Transplant Evaluation. I will also see Dr.

Sonnet the head Surgeon of the TX unit. He is the Dr. that is doing the Web

Seminar on Thursday night.

>

> Thanks,

> Dave, 43, Miami, UIP/IPF 11/09

>