Re: HP & IPF Confusion Questions.... HELP!!!

[Guest guest]

Have you had a Hypersensitivity pneumonitis antibody panel blood test http://www.medicinenet.com/hypersensitivity_pneumonitis/page2.htmhttp://www.nlm.nih.gov/medlineplus/ency/article/000109.htmhttp://www.merck.com/mmpe/sec05/ch055/ch055e.htmlhttp://www.merck.com/media/mmpe/pdf/Table_055-5.pdf P PM (Polymositis) 12/98, UIP 8/00, o2 24/7 9 LPM 8/04, PH 3/06, ILL yo 60REMEMBER : All of you on Prednisone'stressed' spelled backwards is

'desserts'If God brings you to it - He will bring you through it.Subject: HP & IPF Confusion Questions.... HELP!!!To: Breathe-Support Date: Tuesday, April 14, 2009, 11:05 PM

OK, here is the confusion over IPF and HP. In 1997 I was diagnosed during my first "attack" in Long Beach Memorial. They said Interstitial Pneumonitis. Now I learn that PF and IP are interchangeable terms. It was during the rainy season in CA and we were right across highway from beach.

In 2001 my misdiagnosis by a TN doctor was Asthma. I lived on a river right outside Smoky Mountain National Park and could not tolerate the damp evenings outside. Coughing and dyspnea would get very bad. New house, no mold inside.

When, after 3+ years the "asthma" would not improve except with Prednisone, I was sent to an allergist who said I did NOT have asthma. Then to pulmonologist and open biopsy. Biopsy said PF. Since I had no known cause, they called it IPF. Later, with slides sent to Mayo and Duke for opinions and the 5 months of prednisone did a very good job of clearning it up (extensive ground glass and honey combing aside), the pulmonologist said he thought it was IPF with an added aspect of HP. I have severe dyspnea with any exertion at all whether HP is bothering me or not.

My pulmonologist here in Utah thinks it is just PF. Fact is, though, I cannot tolerate anything with mold and go into near respiratory arrest if I have a severe exposure. Prednisone eventually brings me out of it and I use Advair inhaler daily, adding a Qvar inhaler prn. Albuterol helps slightly if needed. Sorry to be so long winded but without the timeline it is very confusing.

Thanks for info and input. It is a learning process and I need all the teaching I can get. I don't feel like there are more than 4 or 5 years left for me. Just call it intuition. It has been 12 years now... not bad!

ann

[Guest guest]

Have you had a Hypersensitivity pneumonitis antibody panel blood test http://www.medicinenet.com/hypersensitivity_pneumonitis/page2.htmhttp://www.nlm.nih.gov/medlineplus/ency/article/000109.htmhttp://www.merck.com/mmpe/sec05/ch055/ch055e.htmlhttp://www.merck.com/media/mmpe/pdf/Table_055-5.pdf P PM (Polymositis) 12/98, UIP 8/00, o2 24/7 9 LPM 8/04, PH 3/06, ILL yo 60REMEMBER : All of you on Prednisone'stressed' spelled backwards is

'desserts'If God brings you to it - He will bring you through it.Subject: HP & IPF Confusion Questions.... HELP!!!To: Breathe-Support Date: Tuesday, April 14, 2009, 11:05 PM

OK, here is the confusion over IPF and HP. In 1997 I was diagnosed during my first "attack" in Long Beach Memorial. They said Interstitial Pneumonitis. Now I learn that PF and IP are interchangeable terms. It was during the rainy season in CA and we were right across highway from beach.

In 2001 my misdiagnosis by a TN doctor was Asthma. I lived on a river right outside Smoky Mountain National Park and could not tolerate the damp evenings outside. Coughing and dyspnea would get very bad. New house, no mold inside.

When, after 3+ years the "asthma" would not improve except with Prednisone, I was sent to an allergist who said I did NOT have asthma. Then to pulmonologist and open biopsy. Biopsy said PF. Since I had no known cause, they called it IPF. Later, with slides sent to Mayo and Duke for opinions and the 5 months of prednisone did a very good job of clearning it up (extensive ground glass and honey combing aside), the pulmonologist said he thought it was IPF with an added aspect of HP. I have severe dyspnea with any exertion at all whether HP is bothering me or not.

My pulmonologist here in Utah thinks it is just PF. Fact is, though, I cannot tolerate anything with mold and go into near respiratory arrest if I have a severe exposure. Prednisone eventually brings me out of it and I use Advair inhaler daily, adding a Qvar inhaler prn. Albuterol helps slightly if needed. Sorry to be so long winded but without the timeline it is very confusing.

Thanks for info and input. It is a learning process and I need all the teaching I can get. I don't feel like there are more than 4 or 5 years left for me. Just call it intuition. It has been 12 years now... not bad!

ann

[Guest guest]

Have you had a Hypersensitivity pneumonitis antibody panel blood test http://www.medicinenet.com/hypersensitivity_pneumonitis/page2.htmhttp://www.nlm.nih.gov/medlineplus/ency/article/000109.htmhttp://www.merck.com/mmpe/sec05/ch055/ch055e.htmlhttp://www.merck.com/media/mmpe/pdf/Table_055-5.pdf P PM (Polymositis) 12/98, UIP 8/00, o2 24/7 9 LPM 8/04, PH 3/06, ILL yo 60REMEMBER : All of you on Prednisone'stressed' spelled backwards is

'desserts'If God brings you to it - He will bring you through it.Subject: HP & IPF Confusion Questions.... HELP!!!To: Breathe-Support Date: Tuesday, April 14, 2009, 11:05 PM

OK, here is the confusion over IPF and HP. In 1997 I was diagnosed during my first "attack" in Long Beach Memorial. They said Interstitial Pneumonitis. Now I learn that PF and IP are interchangeable terms. It was during the rainy season in CA and we were right across highway from beach.

In 2001 my misdiagnosis by a TN doctor was Asthma. I lived on a river right outside Smoky Mountain National Park and could not tolerate the damp evenings outside. Coughing and dyspnea would get very bad. New house, no mold inside.

When, after 3+ years the "asthma" would not improve except with Prednisone, I was sent to an allergist who said I did NOT have asthma. Then to pulmonologist and open biopsy. Biopsy said PF. Since I had no known cause, they called it IPF. Later, with slides sent to Mayo and Duke for opinions and the 5 months of prednisone did a very good job of clearning it up (extensive ground glass and honey combing aside), the pulmonologist said he thought it was IPF with an added aspect of HP. I have severe dyspnea with any exertion at all whether HP is bothering me or not.

My pulmonologist here in Utah thinks it is just PF. Fact is, though, I cannot tolerate anything with mold and go into near respiratory arrest if I have a severe exposure. Prednisone eventually brings me out of it and I use Advair inhaler daily, adding a Qvar inhaler prn. Albuterol helps slightly if needed. Sorry to be so long winded but without the timeline it is very confusing.

Thanks for info and input. It is a learning process and I need all the teaching I can get. I don't feel like there are more than 4 or 5 years left for me. Just call it intuition. It has been 12 years now... not bad!

ann

[Guest guest]

Have had no antibody test that I know of. This is on my list for next Dr.

visit. Thanks.

ann

[Guest guest]

Michealann,

I would definitely ask my doctor about an HP antibody panel. It does seem as though your diagnosis has bounced around a bit over the years. Though since your biopsy's been read at both Duke and Mayo I would feel comfortable with the IPF/HP label. The HP aspect would explain why the prednisone helps you when you have a flare.

We all learn to live with our particular symptoms and the things that make us feel lousy. I tolerate cold very poorly. My sats drop and I cough horribly when it's cold and dry. Heat and humidity makes me feel great. We learn what helps and what harms and we work within those boundaries.

This is a learning process for all of us. I learn things all the time about this set of diseases and how we all cope. Keep reading and hanging around. I'm biased but I don't think there's a better group of people anywhere!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Wednesday, April 15, 2009 12:05:59 AMSubject: HP & IPF Confusion Questions.... HELP!!!

OK, here is the confusion over IPF and HP. In 1997 I was diagnosed during my first "attack" in Long Beach Memorial. They said Interstitial Pneumonitis. Now I learn that PF and IP are interchangeable terms. It was during the rainy season in CA and we were right across highway from beach.

In 2001 my misdiagnosis by a TN doctor was Asthma. I lived on a river right outside Smoky Mountain National Park and could not tolerate the damp evenings outside. Coughing and dyspnea would get very bad. New house, no mold inside.

When, after 3+ years the "asthma" would not improve except with Prednisone, I was sent to an allergist who said I did NOT have asthma. Then to pulmonologist and open biopsy. Biopsy said PF. Since I had no known cause, they called it IPF. Later, with slides sent to Mayo and Duke for opinions and the 5 months of prednisone did a very good job of clearning it up (extensive ground glass and honey combing aside), the pulmonologist said he thought it was IPF with an added aspect of HP. I have severe dyspnea with any exertion at all whether HP is bothering me or not.

My pulmonologist here in Utah thinks it is just PF. Fact is, though, I cannot tolerate anything with mold and go into near respiratory arrest if I have a severe exposure. Prednisone eventually brings me out of it and I use Advair inhaler daily, adding a Qvar inhaler prn. Albuterol helps slightly if needed. Sorry to be so long winded but without the timeline it is very confusing.

Thanks for info and input. It is a learning process and I need all the teaching I can get. I don't feel like there are more than 4 or 5 years left for me. Just call it intuition. It has been 12 years now... not bad!

ann

[Guest guest]

Thanks Beth. I have been so confused for so long that it's going to take

awhile to sort it out. I believe it has taken me 5 years to emerge from first a

death notice and then denial. Acceptance was somewhere in the middle. Talk

about confused! I was so bad at the time of my biopsy that I could not have

lasted much longer without prednisone. It has been a miracle for me.

Thanks again, ann