Re: Re:bronchieactisis and aspergillisosis

[Guest guest]

Thanks so much. I passed this info along to her. She

already had the albuterol but wasn't aware of the

Spiriva. I think she is seriously going to look into

NJH. I hope so anyway. I had wondered about Xolair for

her but I read where it wasn't used on these diseases.

But maybe it would help after all.

Jeannie

--- SD Designer <instdesgn1@...> wrote:

> Your sister's history has a remarkable similarity to

> my own. I've had the long term lung infections and

> asthma with a doctor who didn't take me seriously

> and now have mosaic bronchieactisis and allergic

> bronchopulmonary aspergillisosis. The prednisone

> treatment is standard but due to the devastating

> side effects I'm not on it. There are other lung

> meds such as Spiriva, Advair, Albuterol, and so

> forth which aren't a real solution but better for me

> than prednisone. Really, this has a lot to do with

> why I'm on Xolair now. I really hope that your

> sister can get to a doc who will put her on Xolair

> and some other treatment. Technically it's not

> approved for allergic bronchopulmonary

> aspergillisosis (which is what I have) but with any

> kind of allergy and asthma, Xolair can be

> prescribed. I think Xolair is even being tested for

> other diseases including chronic sinusitis which I

> have too. I would become very assertive with

> doctors about her treatment and demand better even

> if it's off-label. Good luck to you and your

> sister.

>

>

>

>

> ---------------------------------

> Ahhh...imagining that irresistible " new car " smell?

> Check outnew cars at Autos.

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________

[Guest guest]

Ok. I will forward this to her too. She has been on

Prednisone for nearly 6 months now. She has battling

the other stuff for a few years but has just gotten

the diagnosis on the B & A. I makes me so angry because

he is one of those doctors who wouldn't send her to a

specialist because he felt that he could take care of

it. Her whole family has been telling her all along

to go to another doctor. She finally went to a Pulmo

last year and started doing all the tests to find out

what was going on. HE says he is following NJH

protocol and they wouldn't be able to tell her any

thing new. I told her go anyway!! There is always

something new. All this information you have been

giving is great. I think she will be able to make some

clearer decisions now. Especially since she is really

seeing the side effects of the prednisone and is not

liking the thought of taking it for the rest of her

life. I hope she picks up the book the two of

recommended. She lives in Michigan and I live in

Georgia otherwise I would really be riding her to do

something besides what she is doing!

--- pyle456 <coachmac@...> wrote:

> I'd like to second the idea of trying multiple

> inhaled

> corticosteroids. My doc and I are now trying the

> following

> combination when I have a serious episode - Advair

> 500/1 puff/2x per

> day PLUS pulmicort inhaler/1 puff/2x per day PLUS

> asmaxex inhaler/2

> puffs/2x per day. Then I taper down from there as I

> improve.

> Apparently there are two types of inhaled

> corticosteroids and they

> each target different " areas " of the lungs. While

> taking all those

> steroids isn't great, any time you can used inhaled

> rather than oral

> it decreases your chances of side effects. We've

> done this twice

> now -- once to help me taper off pred during a

> terrible post-mold

> exposure episode and a second time from the get go

> and that time I

> didn't need any pred at all.

>

> Addy

> Group co-owner

> Insert standard disclaimer about talking with your

> own doctor here.

>

>

>

>

> >

> > > Your sister's history has a remarkable

> similarity to

> > > my own. I've had the long term lung infections

> and

> > > asthma with a doctor who didn't take me

> seriously

> > > and now have mosaic bronchieactisis and allergic

> > > bronchopulmonary aspergillisosis. The

> prednisone

> > > treatment is standard but due to the devastating

> > > side effects I'm not on it. There are other

> lung

> > > meds such as Spiriva, Advair, Albuterol, and so

> > > forth which aren't a real solution but better

> for me

> > > than prednisone. Really, this has a lot to do

> with

> > > why I'm on Xolair now. I really hope that your

> > > sister can get to a doc who will put her on

> Xolair

> > > and some other treatment. Technically it's not

> > > approved for allergic bronchopulmonary

> > > aspergillisosis (which is what I have) but with

> any

> > > kind of allergy and asthma, Xolair can be

> > > prescribed. I think Xolair is even being tested

> for

> > > other diseases including chronic sinusitis which

> I

> > > have too. I would become very assertive with

> > > doctors about her treatment and demand better

> even

> > > if it's off-label. Good luck to you and your

> > > sister.

> > >

> > >

> > >

> > >

> > > ---------------------------------

> > > Ahhh...imagining that irresistible " new car "

> smell?

> > > Check outnew cars at Autos.

> > >

> > > [Non-text portions of this message have been

> > > removed]

> > >

> > >

> >

> >

> > __________________________________________________

> >

[Guest guest]

Everyone has given me so much information. I really

appreciate you all taking time out to share your

stories and your experiences. What a great group we

have!

Jeannie.

[Guest guest]

Jeannie - I've found the albuterol to be a bit helpful, but have found

combivent, which also contains ipratropium bromide, to be much more

effective.

Terry

----- Original Message -----

From: Gail s

Sent: Wednesday, April 25, 2007 5:04 PM

Subject: Re: [ ] Re:bronchieactisis and aspergillisosis

Thanks so much. I passed this info along to her. She

already had the albuterol but wasn't aware of the

Spiriva. I think she is seriously going to look into

NJH. I hope so anyway. I had wondered about Xolair for

her but I read where it wasn't used on these diseases.

But maybe it would help after all.

Jeannie

--- SD Designer <instdesgn1@...> wrote:

> Your sister's history has a remarkable similarity to

> my own. I've had the long term lung infections and

> asthma with a doctor who didn't take me seriously

> and now have mosaic bronchieactisis and allergic

> bronchopulmonary aspergillisosis. The prednisone

> treatment is standard but due to the devastating

> side effects I'm not on it. There are other lung

> meds such as Spiriva, Advair, Albuterol, and so

> forth which aren't a real solution but better for me

> than prednisone. Really, this has a lot to do with

> why I'm on Xolair now. I really hope that your

> sister can get to a doc who will put her on Xolair

> and some other treatment. Technically it's not

> approved for allergic bronchopulmonary

> aspergillisosis (which is what I have) but with any

> kind of allergy and asthma, Xolair can be

> prescribed. I think Xolair is even being tested for

> other diseases including chronic sinusitis which I

> have too. I would become very assertive with

> doctors about her treatment and demand better even

> if it's off-label. Good luck to you and your

> sister.

>

>

>

>

> ---------------------------------

> Ahhh...imagining that irresistible " new car " smell?

> Check outnew cars at Autos.

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________