nebulizors and inhalers for fibrosis

[Guest guest]

I was under the impression that nebulizors and inhalers were great for COPD,

Emphysema, ashma, but didn't do a thing for fibrosis. I had to be admitted to

OSU because I am just getting worse. They had me on a neb and inhaler treatment

every 5 hours. Of course I felt no difference what so ever. What I need is more

oxygen......Was I misinformed?

ellen

[Guest guest]

Ellen,

It depends.... yes in general nebulizer treatments and various inhalers are more useful to those with obstructive lung disease, emphysema, COPD, asthma etc. However remember a nebulizer is just a delivery method to get medication into the lungs. There are nebulizer treatments with steroids that could be useful to some ILD patients, there are things like Mucomyst which is NAC for the nebulizer...helps to loosen up any mucous laying around in our lungs so that we can cough it up.

The same goes for inhalers...it depends on the medication that's being inhaled. I used to use Advair because the steroid in it helped to control my cough and the doctor I was seeing at the time felt it was better and more efficient to put the steroid directly into the lungs where I needed it than to take the prednisone orally.

What is generally not too useful are the kinds of breathing treatments with the bronchodilators....albuterol is the most common one. Since bronchospasm and constriction is not part of the ILD profile these drugs generally do not help us much. However and this is important, some people have a dual diagnosis....ipf and emphysema or something like that. In that case you will see all kinds of combinations of medications that you wouldn't see in someone with just IPF.

Hope that helps!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Monday, August 17, 2009 10:01:05 AMSubject: nebulizors and inhalers for fibrosis

I was under the impression that nebulizors and inhalers were great for COPD, Emphysema, ashma, but didn't do a thing for fibrosis. I had to be admitted to OSU because I am just getting worse. They had me on a neb and inhaler treatment every 5 hours. Of course I felt no difference what so ever. What I need is more oxygen...... Was I misinformed? ellen

[Guest guest]

Beth, When I had acute

bronchitis in March the hospital "pulmodude"

put me on Duo-neb 4 X daily...it's albuteral and Atrovent combined.

It helped with the coughing and the congestion.Made me jumpy as H***

After I was finally over the bronchitis I don't need that any more.

Z fibriotic NSIP/05

Z 65, fibriotic NSIP/05/PA

And

“mild” PH/10/07 and Reynaud’s too!!

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 Zion” Bob Marley

Vinca

Minor-periwinkle is my flower

Beth wrote:

Ellen,

It depends.... yes in general nebulizer treatments and various

inhalers are more useful to those with obstructive lung disease,

emphysema, COPD, asthma etc. However remember a nebulizer is just a

delivery method to get medication into the lungs. There are nebulizer

treatments with steroids that could be useful to some ILD patients,

there are things like Mucomyst which is NAC for the nebulizer...helps

to loosen up any mucous laying around in our lungs so that we can cough

it up.

The same goes for inhalers...it depends on the medication that's

being inhaled. I used to use Advair because the steroid in it helped to

control my cough and the doctor I was seeing at the time felt it was

better and more efficient to put the steroid directly into the lungs

where I needed it than to take the prednisone orally.

What is generally not too useful are the kinds of breathing

treatments with the bronchodilators....albuterol is the most

common one. Since bronchospasm and constriction is not part of the

ILD profile these drugs generally do not help us much. However and this

is important, some people have a dual diagnosis....ipf and

emphysema or something like that. In that case you will see all kinds

of combinations of medications that you wouldn't see in someone

with just IPF.

Hope that helps!

Beth

Moderator

Fibrotic

NSIP 06/06 Dermatomyositis 11/08

From:

polenellen <polenellen (AT) aol (DOT) com>

To: Breathe-Support

Sent: Monday, August

17, 2009 10:01:05 AM

Subject:

nebulizors and inhalers for fibrosis

I was under the impression that nebulizors and inhalers were great

for COPD, Emphysema, ashma, but didn't do a thing for fibrosis. I had

to be admitted to OSU because I am just getting worse. They had me on a

neb and inhaler treatment every 5 hours. Of course I felt no difference

what so ever. What I need is more oxygen...... Was I misinformed?

ellen

[Guest guest]

Dear Ellen,I was diagnosed with IPF in March 2009. Dr. Chapman at Cleveland Clinic put me on Advair and Flovent inhalers twice a day to treat the inflammation in my lungs and therefore stop the damage it's doing. He explained he wanted to give a blast of steroids to my lungs directly instead of taking them orally at this time. My doctors said this was a long term solution, not something that was going to happen right away.My breathing does seem to be much easier. I'm able to exercise and go for walks and bicycle ride a lot better than I did 6 to 9 months ago. Yes, I still get SOB and tired more easily, but I feel much better with the inhalers.I will see the Dr. in Sept. and go on from there after I get some blood work done and 6 MWT.Oh by the way, they are leaning towards the cause being Sjogren's and GERDS. PJ in OH, 54, IPF '09, Sjogren's '95 nebulizors and inhalers for fibrosis

I was under the impression that nebulizors and inhalers were great for COPD, Emphysema, ashma, but didn't do a thing for fibrosis. I had to be admitted to OSU because I am just getting worse. They had me on a neb and inhaler treatment every 5 hours. Of course I felt no difference what so ever. What I need is more oxygen......Was I misinformed? ellen

[Guest guest]

mary beth

thanks for explaining one of the tests the first pulmonary did

he gave me a treatment with some kind of inhaler or nebulizer (2006) don't remember for sure

then he had me repeat the test -- i think it was walking up the steps and then he used the oximeter again

that's before we knew anything

then he ordered lots of tests -- pfts, x rays, blood work, by the third or fourth visit he had the diagnosis and said he couldn't do anything for me

informed me that penn and temple have specialized departments

i could check them out (i forget his exact words)

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

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: nebulizors and inhalers for fibrosisTo: Breathe-Support Date: Monday, August 17, 2009, 10:14 AM

Ellen,

It depends.... yes in general nebulizer treatments and various inhalers are more useful to those with obstructive lung disease, emphysema, COPD, asthma etc. However remember a nebulizer is just a delivery method to get medication into the lungs. There are nebulizer treatments with steroids that could be useful to some ILD patients, there are things like Mucomyst which is NAC for the nebulizer... helps to loosen up any mucous laying around in our lungs so that we can cough it up.

The same goes for inhalers...it depends on the medication that's being inhaled. I used to use Advair because the steroid in it helped to control my cough and the doctor I was seeing at the time felt it was better and more efficient to put the steroid directly into the lungs where I needed it than to take the prednisone orally.

What is generally not too useful are the kinds of breathing treatments with the bronchodilators. ...albuterol is the most common one. Since bronchospasm and constriction is not part of the ILD profile these drugs generally do not help us much. However and this is important, some people have a dual diagnosis... .ipf and emphysema or something like that. In that case you will see all kinds of combinations of medications that you wouldn't see in someone with just IPF.

Hope that helps!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

From: polenellen <polenellen (AT) aol (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Monday, August 17, 2009 10:01:05 AMSubject: nebulizors and inhalers for fibrosis

I was under the impression that nebulizors and inhalers were great for COPD, Emphysema, ashma, but didn't do a thing for fibrosis. I had to be admitted to OSU because I am just getting worse. They had me on a neb and inhaler treatment every 5 hours. Of course I felt no difference what so ever. What I need is more oxygen...... Was I misinformed? ellen

[Guest guest]

,

I was on DuoNeb also for a few months after I was diagnosed. I hated it, made my heart race and gave me the shakes much worse than anything prednisone ever did to me. Hated it, hated it hated it. LOL

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Monday, August 17, 2009 1:55:29 PMSubject: Re: nebulizors and inhalers for fibrosis

Beth, When I had acute bronchitis in March the hospital "pulmodude"put me on Duo-neb 4 X daily...it's albuteral and Atrovent combined. It helped with the coughing and the congestion.Made me jumpy as H***After I was finally over the bronchitis I don't need that any more.

Z 65, fibriotic NSIP/05/PA

And “mild†PH/10/07 and Reynaud’s too!!

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 Zion†Bob Marley

Vinca Minor-periwinkle is my flower

Beth wrote:

Ellen,

It depends.... yes in general nebulizer treatments and various inhalers are more useful to those with obstructive lung disease, emphysema, COPD, asthma etc. However remember a nebulizer is just a delivery method to get medication into the lungs. There are nebulizer treatments with steroids that could be useful to some ILD patients, there are things like Mucomyst which is NAC for the nebulizer... helps to loosen up any mucous laying around in our lungs so that we can cough it up.

The same goes for inhalers...it depends on the medication that's being inhaled. I used to use Advair because the steroid in it helped to control my cough and the doctor I was seeing at the time felt it was better and more efficient to put the steroid directly into the lungs where I needed it than to take the prednisone orally.

What is generally not too useful are the kinds of breathing treatments with the bronchodilators. ...albuterol is the most common one. Since bronchospasm and constriction is not part of the ILD profile these drugs generally do not help us much. However and this is important, some people have a dual diagnosis... .ipf and emphysema or something like that. In that case you will see all kinds of combinations of medications that you wouldn't see in someone with just IPF.

Hope that helps!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

From: polenellen <polenellen (AT) aol (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Monday, August 17, 2009 10:01:05 AMSubject: nebulizors and inhalers for fibrosis

I was under the impression that nebulizors and inhalers were great for COPD, Emphysema, ashma, but didn't do a thing for fibrosis. I had to be admitted to OSU because I am just getting worse. They had me on a neb and inhaler treatment every 5 hours. Of course I felt no difference what so ever. What I need is more oxygen...... Was I misinformed? ellen

[Guest guest]

Yes Beth is right I have asthma, emphsema, copd and Ipf among other things

and have been on them all but I found that the predisone was the only one I

hated due to increase in my appitite...I ate like a horse..not hay and oats but

enough to fill one up...

I was told I have to take these to keep them at bay so they dont take over my

life and then the IPF came along and another whammy but I just try and do what

seems best for my body...dont want any more predisone (liked the advair better)

but if I have to and they can show me it will be better then I will..

hugs

merry

I count not a day complete till needle, thread and fabric do meet.

2009 will be mighty fine!

Due to recent budget cuts and the rising cost of electricity, gas and oil,

as well as current market conditions, the Light at the End of the Tunnel has

been turned off.

[Guest guest]

Thank you for your answer. I had my first appt w/the Cleveland Clinic, wow what

a place. I have a couple of tests I need done, restart rehab and lose 30 lbs to

meet the BMI. It's very doable if I can just get this stabilized.

ellen

>

> Dear Ellen,

> I was diagnosed with IPF in March 2009. Dr. Chapman at Cleveland Clinic put me

on Advair and Flovent inhalers twice a day to treat the inflammation in my

lungs and therefore stop the damage it's doing. He explained he wanted to give a

blast of steroids to my lungs directly instead of taking them orally at this

time. My doctors said this was a long term solution, not something that was

going to happen right away.

>

> My breathing does seem to be much easier. I'm able to exercise and go for

walks and bicycle ride a lot better than I did 6 to 9 months ago.

> Yes, I still get SOB and tired more easily, but I feel much better with the

inhalers.

>

> I will see the Dr. in Sept. and go on from there after I get some blood work

done and 6 MWT.

>

> Oh by the way, they are leaning towards the cause being Sjogren's and GERDS.

>

> PJ in OH, 54, IPF '09, Sjogren's '95

>

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> I was under the impression that nebulizors and inhalers were great for COPD,

Emphysema, ashma, but didn't do a thing for fibrosis. I had to be admitted to

OSU because I am just getting worse. They had me on a neb and inhaler treatment

every 5 hours. Of course I felt no difference what so ever. What I need is more

oxygen......Was I misinformed?

>

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> ellen

>

[Guest guest]

Good luck Ellen. It sounds like you have a plan. I hope the very best for you!PJ in Ohio, 54, IPF '09, Sjogren's '95 nebulizors and inhalers for fibrosis> > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > I was under the impression that nebulizors and inhalers were great for COPD, Emphysema, ashma, but didn't do a thing for fibrosis. I had to be admitted to OSU because I am just getting worse. They had me on a neb and inhaler treatment every 5 hours. Of course I felt no difference what so ever. What I need is more oxygen......Was I misinformed? > > > > > > ellen>