Re: introduction - HI Kathleen

[Guest guest]

Thank you

so much for writing! Boy, you are on a lot of medicine!

Have you

had any chest x rays or cat scans?

I am

wondering if some people that have been diagnosed with just asthma, actually

have what I have.

I wanted

to take Xolair. I think my IGE is too high to qualify.

Is there

any way you can find out your numbers?

This is a

puzzle to me.

I am

trying to figure out if I actually have Allergic Bronchial Pulmonary

Aspergillus or if it is just asthma and allergy. I know I DID have it, but I am

trying to figure out if it’s gone.

I do have

bronchiectasis in one lung which is permanent.

Here’s

what I know about IGE.

114 is

normal.

I wasn’t

tested in the beginning, so I don’t know how high I was.

Last

summer, I had a flare up and was 5,500 and the ct scan read pneumonia but the

dr. didn’t think so.

While I’ve

been out of work, I remained 1035 for 2 months. Still not normal, but better.

I am on 10

mg of prednisone a day, but it really doesn’t help and I don’t want

more.

Right now

I am not producing that thick mucus. I am just short of breath and have that

tightness.

If I was

to catch a cold, it could be very bad. I am afraid to go back to work.

What are

your symptoms? Do you wheeze? Do you see an allergist or pulmonary doctor?

Are you

able to work? Do you have problems with your sinuses?

I had 4

sinus surgeries. It’s been about 15 years.

Again,

thanks for the reply. I don’t want to become dependent on steroids.

Barbara

Hi Barb and welcome to our group! I too am on chronic

steroids and

yes, I have tons of side effects from them. I have Cushings,

Osteonecrosis, Osteopenia and cataracts all caused by steroid use. I

also have adrenal issues, although you can't have 's &

Cushings at the same time. I've been on steroids non-stop for 2

years now, but have been off & on since my early 20's. (I'm 39).

It's not much of a choice though. I can't live if I can't breathe

and I can't breathe without the steroids. I can however live with

the nasty side effects. I don't like them. I downright hate them,

but I like living more!

As far as meds go, I'm currently on Medrol (methylprednisolone) and

hydrocortisone for the steroids and my other asthma meds include:

Zyflo CR, Spiriva, Asmanex, Perforomist, Xopenex, Duoneb, Zyrtec,

Xolair and albuterol.

I've had my IGe tested, but I don't know the specific numbers. I do

qualify for Xolair injections which is an antibody that attaches to

your IGe to help stop allergic asthmatic reactions. Feel free to

email me for more info or if I can be of any help to you. :-)

Take care and again welcome!

Kathleen - Oregon

[Guest guest]

>

> Thank you so much for writing! Boy, you are on a lot of medicine!

***you're very welcome! Too many meds and that didn't even include

my other stuff!!***

> Have you had any chest x rays or cat scans?

***too many to count!!***

> I am wondering if some people that have been diagnosed with just

asthma,

> actually have what I have.

***I may have something called Churg-Strauss, but can't get a

positive diagnosis because of the steroids***

> I wanted to take Xolair. I think my IGE is too high to qualify.

***I was right near the borderline because of the steroids***

> Is there any way you can find out your numbers?

***I'm sure it's one of the tests they'll do again when I'm at

National Jewish later this month. I could let you know then.***

> This is a puzzle to me.

>

> I am trying to figure out if I actually have Allergic Bronchial

Pulmonary

> Aspergillus or if it is just asthma and allergy. I know I DID have

it, but I

> am trying to figure out if it's gone.

***Have they done a bronchoscopy? They should be able to tell by

that and I know sometimes it shows up on chest CT's?***

> I do have bronchiectasis in one lung which is permanent.

***yes, I have some bronchiectasis and permanent scarring too***

> Here's what I know about IGE.

>

> 114 is normal.

>

> I wasn't tested in the beginning, so I don't know how high I was.

>

> Last summer, I had a flare up and was 5,500 and the ct scan read

pneumonia

> but the dr. didn't think so.

>

> While I've been out of work, I remained 1035 for 2 months. Still

not normal,

> but better.

>

> I am on 10 mg of prednisone a day, but it really doesn't help and I

don't

> want more.

>

> Right now I am not producing that thick mucus. I am just short of

breath and

> have that tightness.

>

> If I was to catch a cold, it could be very bad. I am afraid to go

back to

> work.

>

> What are your symptoms? Do you wheeze? Do you see an allergist or

pulmonary

> doctor?

***I'm a cougher and I'm always short of breath. I don't wheeze

often, but I do on occasion. I have lots of chest tightness and that

nasty thick mucous comes and goes. I see both doctors. I have an

asthma/allergy/immunology specialist I see at least once a month and

I have a pulmonologist I see every 3 months or so.***

> Are you able to work? Do you have problems with your sinuses?

***I've been disabled now for 2 years and can't work. I have other

problems besides my breathing, but the breathing is what keeps me

from working the most. Oh yes, sinus infections and I are old

friends!***

> I had 4 sinus surgeries. It's been about 15 years.

***I've had several sinus surgeries as well. I have more room to

breathe in there, but I still battle with constant infection.***

> Again, thanks for the reply. I don't want to become dependent on

steroids.

***I don't think anyone in their right mind wants to take steroids,

but they will keep you alive and breathing!***

*****Good luck Barbara! I hope my answers helped you. At the very

least you know you aren't alone!*****

Kathleen

>

>

>

> Hi Barb and welcome to our group! I too am on chronic steroids and

> yes, I have tons of side effects from them. I have Cushings,

> Osteonecrosis, Osteopenia and cataracts all caused by steroid use.

I

> also have adrenal issues, although you can't have 's &

> Cushings at the same time. I've been on steroids non-stop for 2

> years now, but have been off & on since my early 20's. (I'm 39).

> It's not much of a choice though. I can't live if I can't breathe

> and I can't breathe without the steroids. I can however live with

> the nasty side effects. I don't like them. I downright hate them,

> but I like living more!

>

> As far as meds go, I'm currently on Medrol (methylprednisolone) and

> hydrocortisone for the steroids and my other asthma meds include:

> Zyflo CR, Spiriva, Asmanex, Perforomist, Xopenex, Duoneb, Zyrtec,

> Xolair and albuterol.

>

> I've had my IGe tested, but I don't know the specific numbers. I do

> qualify for Xolair injections which is an antibody that attaches to

> your IGe to help stop allergic asthmatic reactions. Feel free to

> email me for more info or if I can be of any help to you. :-)

>

> Take care and again welcome!

> Kathleen - Oregon

>