Re: PAH and 02

June 14, 2009

Joy

There are many causes of Pulmonary Hypertension. Those listed as most

common by NIH are:

Primary pulmonary hypertension with no identified cause or caused by

congenital heart disease, HIV, thyroid disease, diet meds and street

drugs.

Secondary pulmonary hypertension caused by Mitral Valve Disease, Lung

Diseases, Sleep Apnea, Sickle Cell Disease, and Sarcoidosis.

I haven't heard prednisone listed as a typical cause. For most of us

here with secondary PH, the cause is lack of oxygen due to our PF.

43 is not considered exceptionally high for pulmonary pressure as

measured through an echocardiogram. However, since a right heart

catheter is the only way to be sure, if I showed a 43 I would be wanting

one to be done. Mine is a little higher than that, not considered cause

for serious concern by my pulmonologist, but definitely leading me to an

expert in Pulmonary Hypertension. There are relatively few. I expect to

have a right heart catheter soon myself.

As to Dr. Raghu, the University of Washington is one of the IPF Centers

of Excellence and Dr. Raghu is highly respected by many. I am not among

that many. He has debated that he believes in prescribing prednisone for

all PF patients. I don't necessarily believe that. However, my arguments

center more around his promotion of medications under development by one

specific Pharmaceutical from which he has received substantial income

over the years. One of those meds resulted in much harm including deaths

and was never approved but prescribed off label. The other has not been

approved yet either.

>

> Hi Sher!

>

> I asked my new doc what caused the PAH and she said Prednisone is a

contributor....we all know how we love pred! I go in next Wed to the

cardiologist who'll do that thing front your leg to the right heart to

determine which med I should take and the extent of damage. The high #

for the hypertension was 43 - I think that is pretty high

>

> I also take 02 with my CPAP at night now. Yes, I was doing

better...but now I'm not so good. One of the symptoms of the PAH is

chest pain...so there! Dr. Raghu would just look at me when I told him

ab out the pain on exertion...then my last visit we did an ekg - which

showed nothing wrong.

>

> My new doc is very thorough and is kind. I am wondering about others

with the PAH, and how you are doing - etc.

>

> Thanks, Joy

>

June 14, 2009

What is PAH?Beverley Joy, 71, IPF 1-09, Sjogren's, Fibromyalgia, diabetes, IdahoSubject: PAH and 02To: Breathe-Support Date: Sunday, June 14, 2009, 4:19 PM

Hi Sher!

I asked my new doc what caused the PAH and she said Prednisone is a contributor. ...we all know how we love pred! I go in next Wed to the cardiologist who'll do that thing front your leg to the right heart to determine which med I should take and the extent of damage. The high # for the hypertension was 43 - I think that is pretty high

I also take 02 with my CPAP at night now. Yes, I was doing better...but now I'm not so good. One of the symptoms of the PAH is chest pain...so there! Dr. Raghu would just look at me when I told him ab out the pain on exertion...then my last visit we did an ekg - which showed nothing wrong.

My new doc is very thorough and is kind. I am wondering about others with the PAH, and how you are doing - etc.

Thanks, Joy

June 15, 2009

Beverley Joy,

PAH is Pulmonary Arterial Hypertension, also known as PH or pulmonary hypertension. Here is some information from the Mayo Clinics website:

"Pulmonary hypertension, affects only the arteries in the lungs and the right side of your heart.

Pulmonary hypertension begins when tiny arteries in your lungs, called pulmonary arteries and capillaries, become narrowed, blocked or destroyed. This makes it harder for blood to flow through your lungs, which raises pressure within the pulmonary arteries. As the pressure builds, your heart's lower right chamber (right ventricle) must work harder to pump blood through your lungs, eventually causing your heart muscle to weaken and sometimes fail completely.

Pulmonary hypertension is a serious illness that becomes progressively worse and is sometimes fatal. Although it isn't curable, treatments are available that can help lessen symptoms and improve your quality of life if you have pulmonary hypertension."

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Sunday, June 14, 2009 11:48:38 PMSubject: Re: PAH and 02

What is PAH?Beverley Joy, 71, IPF 1-09, Sjogren's, Fibromyalgia, diabetes, Idaho

From: joynoel3208 <joynoel3208@ yahoo.com>Subject: PAH and 02To: Breathe-Support@ yahoogroups. comDate: Sunday, June 14, 2009, 4:19 PM

Hi Sher!I asked my new doc what caused the PAH and she said Prednisone is a contributor. ...we all know how we love pred! I go in next Wed to the cardiologist who'll do that thing front your leg to the right heart to determine which med I should take and the extent of damage. The high # for the hypertension was 43 - I think that is pretty highI also take 02 with my CPAP at night now. Yes, I was doing better...but now I'm not so good. One of the symptoms of the PAH is chest pain...so there! Dr. Raghu would just look at me when I told him ab out the pain on exertion...then my last visit we did an ekg - which showed nothing wrong. My new doc is very thorough and is kind. I am wondering about others with the PAH, and how you are doing - etc.Thanks, Joy

June 15, 2009

what is pah? pulmonary a--------- hypertension?

Pink Joyce (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: PAH and 02To: Breathe-Support Date: Sunday, June 14, 2009, 7:19 PM

Hi Sher!I asked my new doc what caused the PAH and she said Prednisone is a contributor. ...we all know how we love pred! I go in next Wed to the cardiologist who'll do that thing front your leg to the right heart to determine which med I should take and the extent of damage. The high # for the hypertension was 43 - I think that is pretty highI also take 02 with my CPAP at night now. Yes, I was doing better...but now I'm not so good. One of the symptoms of the PAH is chest pain...so there! Dr. Raghu would just look at me when I told him ab out the pain on exertion...then my last visit we did an ekg - which showed nothing wrong. My new doc is very thorough and is kind. I am wondering about others with the PAH, and how you are doing - etc.Thanks, Joy

June 15, 2009

,

We have members here who are living with IPF and are not taking prednisone. Most of the experts in this field agree that prednisone does not generally benefit patients with IPF/UIP. There is however the uncommon occasion where prednisone is helpful to someone with IPF. It's a judgement call and a decision that each individual has to make for themselves.

There is not really a substitute for prednisone. Leanne at the Pulmonary Fibrosis Foundation calls it "the best of drugs and the worst of drugs". When there is need for an anti-inflammatory drug, nothing beats prednisone but there are substantial side effects as you know.

I was on doses of up to 100mg per day back in 2006 when I was first diagnosed. (I have fibrotic NSIP not IPF) I was able to wean completely off of the pred in early 2007 and have been off since that time. Fortunately my lung disease has stayed stable.

Is there any possibility you could consult the folks at Cleveland Clinic again? The amount of congestion you describe in your lungs is obviously concerning. What is also concerning is the idea of just throwing prednisone at every problem that comes down the pike for someone with IPF. Prednisone is safest when used for short courses. That information is absolutely correct. It can be used over longer terms and if it helps it's a godsend but there are risks and side effects.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Cc: john burns Sent: Monday, June 15, 2009 6:12:09 PMSubject: Re: PAH and 02

Beth: I am new and I signed up as luvmemax. Then I found this to be unnecessary. My full name is in my email.

I was diagnosed with IPF on Nov 1, 2008. My pulmonary fibrosis was triggered by an event--working carelessly with fiber glass insulation.

Within one 24 hr. period. I develop a constant day time cough with some spiting. My pulmonary Dr. put me on 60 mg prednisone for a full year.

I visited the Cleveland Clinic Dec. 22, 2008 and they also said I had beginning d IPF and they wrote my Dr. suggesting I stop using prednisone. I was able to drop prednisone completely by May 1, 2009 .

Since I quit using prednisone my lungs are filling up with Flem and my nasal cavities with mucous. On most days it takes from 4 PM to 11 PM to clear my lungs. The only way I know my lungs have cleared is examination by a nurse at my Pul. Rehap Class. I exercise on a stationary bike 30 min. and walk my dog 40 min each day.

I visited the VA hospital in Michigan. The VA pulmonary Dr. insists that I return to a high dosage of predisone to clear my lungs.

My brother died of IPF July, 2008. He was an MD who believed in prednisone. He had a lung transplant: however, he lived less than two years with IPF. He suffered many side effects from predinsone to include severe osteoporosis.

Do you have IPF contacts living without predisone. If so what are they using as a substitute for pred? I am told that the U. of MI Pulmonary Dept. does not recommend pred. for more than short periods.

Burns

From: Beth <mbmurtha (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Monday, June 15, 2009 7:32:47 AMSubject: Re: PAH and 02

Beverley Joy,

PAH is Pulmonary Arterial Hypertension, also known as PH or pulmonary hypertension. Here is some information from the Mayo Clinics website:

"Pulmonary hypertension, affects only the arteries in the lungs and the right side of your heart.

Pulmonary hypertension begins when tiny arteries in your lungs, called pulmonary arteries and capillaries, become narrowed, blocked or destroyed. This makes it harder for blood to flow through your lungs, which raises pressure within the pulmonary arteries. As the pressure builds, your heart's lower right chamber (right ventricle) must work harder to pump blood through your lungs, eventually causing your heart muscle to weaken and sometimes fail completely.

Pulmonary hypertension is a serious illness that becomes progressively worse and is sometimes fatal. Although it isn't curable, treatments are available that can help lessen symptoms and improve your quality of life if you have pulmonary hypertension. "

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

From: Beverley Joy <sparrow_98367@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Sunday, June 14, 2009 11:48:38 PMSubject: Re: PAH and 02

What is PAH?Beverley Joy, 71, IPF 1-09, Sjogren's, Fibromyalgia, diabetes, Idaho

From: joynoel3208 <joynoel3208@ yahoo.com>Subject: PAH and 02To: Breathe-Support@ yahoogroups. comDate: Sunday, June 14, 2009, 4:19 PM

Hi Sher!I asked my new doc what caused the PAH and she said Prednisone is a contributor. ...we all know how we love pred! I go in next Wed to the cardiologist who'll do that thing front your leg to the right heart to determine which med I should take and the extent of damage. The high # for the hypertension was 43 - I think that is pretty highI also take 02 with my CPAP at night now. Yes, I was doing better...but now I'm not so good. One of the symptoms of the PAH is chest pain...so there! Dr. Raghu would just look at me when I told him ab out the pain on exertion...then my last visit we did an ekg - which showed nothing wrong. My new doc is very thorough and is kind. I am wondering about others with the PAH, and how you are doing - etc.Thanks, Joy

June 15, 2009

Stef

Many samples and aggressive campaigns have been subjects of controversy.

Nexium is a fine example as Astra Zenica is the manufacturer of Prilosec

and Nexium. Some physicians argue that Nexium is nothing but a marketing

ploy and Prilosec is just as good. Others argue that there is a

significant advantage to Nexium. Astra Zeneca has been sued in more than

one country over their strategies and even over the protection of Nexium

against generics. The truth is probably somewhere in between. For the

typical acid reflux patient Prilosec probably is as good. For the

extreme patient and some with other diseases such as us, Prilosec may

not do the job when Nexium might. But there is no way to know in

reality. Meanwhile there is a major difference in cost.

> > > > >

> > > > > Hi Sher!

> > > > >

> > > > > I asked my new doc what caused the PAH and she said Prednisone

is

> > a

> > > > contributor....we all know how we love pred! I go in next Wed

to

> > the

> > > > cardiologist who'll do that thing front your leg to the right

heart

> > to

> > > > determine which med I should take and the extent of damage. The

> > high #

> > > > for the hypertension was 43 - I think that is pretty high

> > > > >

> > > > > I also take 02 with my CPAP at night now. Yes, I was doing

> > > > better...but now I'm not so good. One of the symptoms of the

PAH is

> > > > chest pain...so there! Dr. Raghu would just look at me when I

told

> > him

> > > > ab out the pain on exertion...then my last visit we did an ekg -

> > which

> > > > showed nothing wrong.

> > > > >

> > > > > My new doc is very thorough and is kind. I am wondering about

> > others

> > > > with the PAH, and how you are doing - etc.

> > > > >

> > > > > Thanks, Joy

> > > > >

> > > >

> > >

> >

>

June 15, 2009

, I was also on 60 mg of prednisone for almost a year then another year to ween off. Gained 70 pounds had HORRIBLE side effects and thought I would loose my mind. I will never go on it again unless it is for a short time which Doctors sometimes do.. Imean a week to 10 days...no more. that being said.. I have just come through a mucus battle that was unbelievable I coughed until I thought my ribs would break or were broken but I knew I had to get the mucus out. I used Advair, tessalon pearls, sudifed, NAC and anything else to help dry me up. ( I know I have not spelled one of these meds right but I think you can make out what I mean) LOLThis disease comes with it's own rotten personality. I have not been on prednisone for over two years and was SO happy to be myself again. Take care of you.Love and Prayers, Peggy IPF 2004, FloridaWorry looks around, Sorry looks back, Faith looks up. Beth: I am new and I signed up as luvmemax. Then I found this to be unnecessary. My full name is in my email. I was diagnosed with IPF on Nov 1, 2008. My pulmonary fibrosis was triggered by an event--working carelessly with fiber glass insulation. Within one 24 hr. period. I develop a constant day time cough with some spiting. My pulmonary Dr. put me on 60 mg prednisone for a full year. I visited the Cleveland Clinic Dec. 22, 2008 and they also said I had beginning d IPF and they wrote my Dr. suggesting I stop using prednisone. I was able to drop prednisone completely by May 1, 2009 . Since I quit using prednisone my lungs are filling up with Flem and my nasal cavities with mucous. On most days it takes from 4 PM to 11 PM to clear my lungs. The only way I know my lungs have cleared is examination by a nurse at my Pul. Rehap Class. I exercise on a stationary bike 30 min. and walk my dog 40 min each day. I visited the VA hospital in Michigan. The VA pulmonary Dr. insists that I return to a high dosage of predisone to clear my lungs. My brother died of IPF July, 2008. He was an MD who believed in prednisone. He had a lung transplant: however, he lived less than two years with IPF. He suffered many side effects from predinsone to include severe osteoporosis. Do you have IPF contacts living without predisone. If so what are they using as a substitute for pred? I am told that the U. of MI Pulmonary Dept. does not recommend pred. for more than short periods. Burns From: Beth <mbmurtha (AT) yahoo (DOT) com>To: Breathe-Support Sent: Monday, June 15, 2009 7:32:47 AMSubject: Re: PAH and 02 Beverley Joy, PAH is Pulmonary Arterial Hypertension, also known as PH or pulmonary hypertension. Here is some information from the Mayo Clinics website: "Pulmonary hypertension, affects only the arteries in the lungs and the right side of your heart. Pulmonary hypertension begins when tiny arteries in your lungs, called pulmonary arteries and capillaries, become narrowed, blocked or destroyed. This makes it harder for blood to flow through your lungs, which raises pressure within the pulmonary arteries. As the pressure builds, your heart's lower right chamber (right ventricle) must work harder to pump blood through your lungs, eventually causing your heart muscle to weaken and sometimes fail completely. Pulmonary hypertension is a serious illness that becomes progressively worse and is sometimes fatal. Although it isn't curable, treatments are available that can help lessen symptoms and improve your quality of life if you have pulmonary hypertension. " BethModeratorFibrotic NSIP 06/06 Dermatomyositis 11/08 From: Beverley Joy <sparrow_98367@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Sunday, June 14, 2009 11:48:38 PMSubject: Re: PAH and 02 What is PAH?Beverley Joy, 71, IPF 1-09, Sjogren's, Fibromyalgia, diabetes, Idaho From: joynoel3208 <joynoel3208@ yahoo.com>Subject: PAH and 02To: Breathe-Support@ yahoogroups. comDate: Sunday, June 14, 2009, 4:19 PM Hi Sher!I asked my new doc what caused the PAH and she said Prednisone is a contributor. ...we all know how we love pred! I go in next Wed to the cardiologist who'll do that thing front your leg to the right heart to determine which med I should take and the extent of damage. The high # for the hypertension was 43 - I think that is pretty highI also take 02 with my CPAP at night now. Yes, I was doing better...but now I'm not so good. One of the symptoms of the PAH is chest pain...so there! Dr. Raghu would just look at me when I told him ab out the pain on exertion...then my last visit we did an ekg - which showed nothing wrong. My new doc is very thorough and is kind. I am wondering about others with the PAH, and how you are doing - etc.Thanks, Joy

June 15, 2009

You definitely need to get another consultation with Cleveland Clinic or

someone. The congestion you describe is another issue on top of the

scarring or fibrosis of your lungs. It could be many things and,

therefore, helped my other things. It could well be COPD and then helped

by inhalers. Or it could just be phlegm helped by something like

Mucinex. Until I hear the word " inflammation " then I'm not ready to jump

into the prednisone ship. All Interstitial Lung Diseases are not the

same. All lung diseases are not interstitial. One other thing. Do you

have acid reflux/GERD? This also could be from it and then a protein

pump inhibitor such as Prilosec or Nexium might help. So, someone

knowledgeable needs to tell you what the mucous is and then recommend

something to help you.

I do not take prednisone. However, given the right diagnosis and

information I would. I've just been determined to have the least likely

of situations for it to be helpful.

>

> From: joynoel3208 <joynoel3208@ yahoo.com>

> Subject: PAH and 02

> To: Breathe-Support@ yahoogroups. com

> Date: Sunday, June 14, 2009, 4:19 PM

>

> Hi Sher!

>

> I asked my new doc what caused the PAH and she said Prednisone is a

contributor. ...we all know how we love pred! I go in next Wed to the

cardiologist who'll do that thing front your leg to the right heart to

determine which med I should take and the extent of damage. The high #

for the hypertension was 43 - I think that is pretty high

>

> I also take 02 with my CPAP at night now. Yes, I was doing

better...but now I'm not so good. One of the symptoms of the PAH is

chest pain...so there! Dr. Raghu would just look at me when I told him

ab out the pain on exertion...then my last visit we did an ekg - which

showed nothing wrong.

>

> My new doc is very thorough and is kind. I am wondering about others

with the PAH, and how you are doing - etc.

>

> Thanks, Joy

>

June 15, 2009

Hi ,

I did take 60 mg. Prednisone for about 4 months. It had such a bad affect on me I asked to be taken off. I have been off of it since last June and have done OK without it. Not everyone is as fortunate. I was diagnosed with IPF January 2008. I am going to Emory in Atlanta and have a trial physical this Friday. It is called the Artemis study for IPF. If preliminary physical goes OK I will have to have a heart cath and final blood work prior to the meds. I hope it doesn't affect me as bad as prednisone.

Welcome to the group and you are in great company.

Best of luck and God bless us all,

Joe Lamenskie

ï»¿ ï»¿ JOE & JOANIE LAMENSKIE

IPF JAN. 2008

-- PAH and 02To: Breathe-Support@ yahoogroups. comDate: Sunday, June 14, 2009, 4:19 PM

Hi Sher!I asked my new doc what caused the PAH and she said Prednisone is a contributor. ...we all know how we love pred! I go in next Wed to the cardiologist who'll do that thing front your leg to the right heart to determine which med I should take and the extent of damage. The high # for the hypertension was 43 - I think that is pretty highI also take 02 with my CPAP at night now. Yes, I was doing better...but now I'm not so good. One of the symptoms of the PAH is chest pain...so there! Dr. Raghu would just look at me when I told him ab out the pain on exertion...then my last visit we did an ekg - which showed nothing wrong. My new doc is very thorough and is kind. I am wondering about others with the PAH, and how you are doing - etc.Thanks, Joy

June 21, 2009

my goodness reading this and MB with the amount of Prednisone. Amazes me and i

think my 20mg is alot.. patti FRiend

>

> From: joynoel3208 <joynoel3208@ yahoo.com>

> Subject: PAH and 02

> To: Breathe-Support@ yahoogroups. com

> Date: Sunday, June 14, 2009, 4:19 PM

>

> Hi Sher!

>

> I asked my new doc what caused the PAH and she said Prednisone is a

> contributor. ...we all know how we love pred! I go in next Wed to the

> cardiologist who'll do that thing front your leg to the right heart

> to determine which med I should take and the extent of damage. The

> high # for the hypertension was 43 - I think that is pretty high

>

> I also take 02 with my CPAP at night now. Yes, I was doing

> better...but now I'm not so good. One of the symptoms of the PAH is

> chest pain...so there! Dr. Raghu would just look at me when I told

> him ab out the pain on exertion...then my last visit we did an ekg -

> which showed nothing wrong.

>

> My new doc is very thorough and is kind. I am wondering about others

> with the PAH, and how you are doing - etc.

>

> Thanks, Joy

>

June 21, 2009

Peggy: Thank you. I am fighting with mucous and phlem rather than use Pred.

To: Breathe-Support Sent: Monday, June 15, 2009 7:05:16 PMSubject: Re: PAH and 02, I was also on 60 mg of prednisone for almost a year then another year to ween off. Gained 70 pounds had HORRIBLE side effects and thought I would loose my mind. I will never go on it again unless it is for a short time which Doctors sometimes do.. I

mean a week to 10 days...no more. that being said.. I have just come through a mucus battle that was unbelievable I coughed until I thought my ribs would break or were broken but I knew I had to get the mucus out. I used Advair, tessalon pearls, sudifed, NAC and anything else to help dry me up. ( I know I have not spelled one of these meds right but I think you can make out what I mean) LOL

This disease comes with it's own rotten personality.

I have not been on prednisone for over two years and was SO happy to be myself again.

Take care of you.

Love and Prayers, Peggy

IPF 2004, Florida

Worry looks around,

Sorry looks back,

Faith looks up.