Re: My asthma seems different...

[Guest guest]

My ritual is to use Spiriva, then my glaucoma eyedrops, wait , then use advair

500/50.  I only use my rescue if I am having a little shortness of breath during

the day.  Some days I forget I have the inhaler.  In the evening, I take allegra

and singulair.  I only use advair at night when I am having difficulty. 

 

I never am awakened by shortness of breath/asthma and even when sob is a little

more often it does not keep me from doing what I need/want to do.  Xolair has

helped me so much, but I will always have to take meds.

 

I think I have mentioned that my lungs only function at 33-39%, even after all

the meds and nebulizer.  However, I am to have another pft (the long one) done

in March, just to compare with the one I had two years ago.

 

Xolair has kept my allergies from developing into an infection and that is when

my asthma really flares  So I have had no prednisone or antibiotics in over two

years!  And no er visits for any reason!

 

Is there anyone on xolair who does not have to take any asthma med at all?  Just

curious.

From: uca79iii <uca79iii@...>

Subject: [ ] My asthma seems different...

Date: Saturday, September 27, 2008, 8:04 AM

Mine is every day and chronic. For some reason, rescue inhalers do not

work for me. I have no choice but to use a nebulizer. My asthma is

not severe, I just can't breathe very deep and if I don't neb, it get

does get severe.

I have a daily ritual:

I Neb first thing in the morning with a mixture of xopenex, atrovent

and pulmicort. When it wears off 4 to 5 hours later, I neb again and

again adding up to about 4 to 5 times a day. I use Advair 500/50 in

the mornings and evenings. It is so strange that hardly ever I am

awakened at night with asthma.

I don't consider having an attack until my nebs stop working, then,

its a call to the doctors office.

I also have 1/4 of my left lung that did not develop properly when I

was a child. It shows up on an x ray like nothing is there.

Is anyone else like this?

Doug

Group founder

nebbing as I type

[Guest guest]

hi doug,

i share similar symptoms with you. it's kinda weird, i've had

asthma since i was 5 and i noticed that around 18 it went away and i

was using an occasional couple puffs of combivent. symptom free for

3 years, age 21, i had a VERY difficult time deep breathing and my

inhalers didn't do a thing for me. that's when i started with

xolair. i've been on it for 4 years and it has helped a little but

i swear the symptoms i have now are totally different than when i

was younger? i still have the hardest time getting a full deep

breatht in. my asthma specialist doesn't know what i'm talking

about. i think i have some other breathing condition.

-jay

>

> Mine is every day and chronic. For some reason, rescue inhalers do

not

> work for me. I have no choice but to use a nebulizer. My asthma is

> not severe, I just can't breathe very deep and if I don't neb, it

get

> does get severe.

>

> I have a daily ritual:

>

> I Neb first thing in the morning with a mixture of xopenex,

atrovent

> and pulmicort. When it wears off 4 to 5 hours later, I neb again

and

> again adding up to about 4 to 5 times a day. I use Advair 500/50

in

> the mornings and evenings. It is so strange that hardly ever I am

> awakened at night with asthma.

>

> I don't consider having an attack until my nebs stop working, then,

> its a call to the doctors office.

>

> I also have 1/4 of my left lung that did not develop properly when

I

> was a child. It shows up on an x ray like nothing is there.

>

> Is anyone else like this?

>

> Doug

> Group founder

> nebbing as I type

>

[Guest guest]

When I think I'm breathing deep, according to the pft, I'm not breathing very

deep.  My pulmonologist ordered a PFT that took about an hour to evaluate my

lungs without being invasive.  According to her and my allergist I have 30% of

my lungs that are not diseased.  Neither can explain what has happened although

there are two " theories. "   One is that the asthma I have had for the last twenty

years has destroyed lung tissue; the other theory by my allergist is that my

lungs have been harmed by acid refux. 

 

I am NOT a doctor, nor in any medical field.  I am just sharing with you what

the docs told me.  I cannot take a deep enough breath to do any better than 39%

on the little office pft meter..In the last three years, two and a half of which

have been on xolair, my lungs have not gotten any worse.  But my acid reflux is

also being treated.

 

Oh by the way.....I did not grow up around smokers, nor have I ever smoked in my

life.  I was exposed to it periodically in the employees lounge rooms where I

worked. 

From: Jay McPherson <jmac98105@...>

Subject: [ ] Re: My asthma seems different...

Date: Sunday, October 12, 2008, 2:12 AM

hi doug,

i share similar symptoms with you. it's kinda weird, i've had

asthma since i was 5 and i noticed that around 18 it went away and i

was using an occasional couple puffs of combivent. symptom free for

3 years, age 21, i had a VERY difficult time deep breathing and my

inhalers didn't do a thing for me. that's when i started with

xolair. i've been on it for 4 years and it has helped a little but

i swear the symptoms i have now are totally different than when i

was younger? i still have the hardest time getting a full deep

breatht in. my asthma specialist doesn't know what i'm talking

about. i think i have some other breathing condition.

-jay

>

> Mine is every day and chronic. For some reason, rescue inhalers do

not

> work for me. I have no choice but to use a nebulizer. My asthma is

> not severe, I just can't breathe very deep and if I don't neb, it

get

> does get severe.

>

> I have a daily ritual:

>

> I Neb first thing in the morning with a mixture of xopenex,

atrovent

> and pulmicort. When it wears off 4 to 5 hours later, I neb again

and

> again adding up to about 4 to 5 times a day. I use Advair 500/50

in

> the mornings and evenings. It is so strange that hardly ever I am

> awakened at night with asthma.

>

> I don't consider having an attack until my nebs stop working, then,

> its a call to the doctors office.

>

> I also have 1/4 of my left lung that did not develop properly when

I

> was a child. It shows up on an x ray like nothing is there.

>

> Is anyone else like this?

>

> Doug

> Group founder

> nebbing as I type

>

[Guest guest]

i 'm kind of curious about the acid reflux.  how are you being treated?  i'm

thinking about getting an upper endoscopy because i have been trouble digesting

and have acid reflux etc. 

-jay

From: Jay McPherson <jmac98105 (DOT) com>

Subject: [ ] Re: My asthma seems different...

Date: Sunday, October 12, 2008, 2:12 AM

hi doug,

i share similar symptoms with you. it's kinda weird, i've had

asthma since i was 5 and i noticed that around 18 it went away and i

was using an occasional couple puffs of combivent. symptom free for

3 years, age 21, i had a VERY difficult time deep breathing and my

inhalers didn't do a thing for me. that's when i started with

xolair. i've been on it for 4 years and it has helped a little but

i swear the symptoms i have now are totally different than when i

was younger? i still have the hardest time getting a full deep

breatht in. my asthma specialist doesn't know what i'm talking

about. i think i have some other breathing condition.

-jay

>

> Mine is every day and chronic. For some reason, rescue inhalers do

not

> work for me. I have no choice but to use a nebulizer. My asthma is

> not severe, I just can't breathe very deep and if I don't neb, it

get

> does get severe.

>

> I have a daily ritual:

>

> I Neb first thing in the morning with a mixture of xopenex,

atrovent

> and pulmicort. When it wears off 4 to 5 hours later, I neb again

and

> again adding up to about 4 to 5 times a day. I use Advair 500/50

in

> the mornings and evenings. It is so strange that hardly ever I am

> awakened at night with asthma.

>

> I don't consider having an attack until my nebs stop working, then,

> its a call to the doctors office.

>

> I also have 1/4 of my left lung that did not develop properly when

I

> was a child. It shows up on an x ray like nothing is there.

>

> Is anyone else like this?

>

> Doug

> Group founder

> nebbing as I type

>

[Guest guest]

I am on Nexium most of the time.  Occasionally I'll take the generic because

even my co-pay for the Nexium is expensive.  I also have a hernia which

aggravates the problem.  I did have an endoscopy at the insistence of my

allergist but there has been no damage and no bacteria and no ulcers.  We have

raised the head of my bed and I sleep on two pillows which helps most of the

time.

 

If you want to know more about treating the acid reflux you can find very good

information on line if you type in acid reflux in the subject line.  I actually

got better info there than from the office of the gastroenterologist or from my

allergist.

 

Hope you can get some relief.  Keep after your docs until they find out what's

wrong and get you some help.  Oh--I do have trouble breathing deep sometimes if

I eat too fast or too much, which I have tried to avoid the majority of the

time.  I also try to snack healthy so I don't get too hungry by meal times.  I

think it just takes trying some common sense things on your own like diet, and

eating habits as well as getting help from the doctor.

 

From: Jay McPherson <jmac98105 (DOT) com>

Subject: [ ] Re: My asthma seems different...

Date: Sunday, October 12, 2008, 2:12 AM

hi doug,

i share similar symptoms with you. it's kinda weird, i've had

asthma since i was 5 and i noticed that around 18 it went away and i

was using an occasional couple puffs of combivent. symptom free for

3 years, age 21, i had a VERY difficult time deep breathing and my

inhalers didn't do a thing for me. that's when i started with

xolair. i've been on it for 4 years and it has helped a little but

i swear the symptoms i have now are totally different than when i

was younger? i still have the hardest time getting a full deep

breatht in. my asthma specialist doesn't know what i'm talking

about. i think i have some other breathing condition.

-jay

>

> Mine is every day and chronic. For some reason, rescue inhalers do

not

> work for me. I have no choice but to use a nebulizer. My asthma is

> not severe, I just can't breathe very deep and if I don't neb, it

get

> does get severe.

>

> I have a daily ritual:

>

> I Neb first thing in the morning with a mixture of xopenex,

atrovent

> and pulmicort. When it wears off 4 to 5 hours later, I neb again

and

> again adding up to about 4 to 5 times a day. I use Advair 500/50

in

> the mornings and evenings. It is so strange that hardly ever I am

> awakened at night with asthma.

>

> I don't consider having an attack until my nebs stop working, then,

> its a call to the doctors office.

>

> I also have 1/4 of my left lung that did not develop properly when

I

> was a child. It shows up on an x ray like nothing is there.

>

> Is anyone else like this?

>

> Doug

> Group founder

> nebbing as I type

>

[Guest guest]

For the people with reflux and a history of asthma and atopy....consider when

you are

ever given an endoscopy again to have biopsies down for Eosinophilic

Esophagitis. I will

tell you two years ago I had no problems with breathing since I was about 16. I

was 47

when my miserable process started. My lung functions went way down literally

over

night...and I was a marathoner and mountain climber. While my asthma didn't seem

to be

worse, my lung capacity and breathlessness were. The big think was couldn't

take a deep

breath. Not a quality of asthma. I went through two years of doctors scratching

their

heads, but admitting I had severe idiopathic atopy. My IgE was 295 and climbing.

So, to

cut to the chase, it was discovered I had a hiatal hernia and reflux. Anti-acid

meds did no

good. So, once again a mystery, until a specialist here in Los Angeles

concluded, due to

my atopy and asthma, I had EE. Biopsies were done, and my levels were 7x the

criteria

throughout my entire esophagus. Apparently, EE acts very much like asthma in

terms of

remodeling the lungs and esophagus. Two weeks ago it was discovered the

remodeling

had create a ring at my LES, that is were most of the eosinophils and mast cells

are. So,

every time I swallow food lodges and causes the cells to degranulate, thus

causing a

pseudo allergic reaction. But, my entire esophagus has been re-modeled. What the

causes

is muscular contractions when I swallow food, and consequently, difficulty

taking a breath.

Thought you might want to know.

> >

> > Mine is every day and chronic. For some reason, rescue inhalers do

> not

> > work for me. I have no choice but to use a nebulizer. My asthma is

> > not severe, I just can't breathe very deep and if I don't neb, it

> get

> > does get severe.

> >

> > I have a daily ritual:

> >

> > I Neb first thing in the morning with a mixture of xopenex,

> atrovent

> > and pulmicort. When it wears off 4 to 5 hours later, I neb again

> and

> > again adding up to about 4 to 5 times a day. I use Advair 500/50

> in

> > the mornings and evenings. It is so strange that hardly ever I am

> > awakened at night with asthma.

> >

> > I don't consider having an attack until my nebs stop working, then,

> > its a call to the doctors office.

> >

> > I also have 1/4 of my left lung that did not develop properly when

> I

> > was a child. It shows up on an x ray like nothing is there.

> >

> > Is anyone else like this?

> >

> > Doug

> > Group founder

> > nebbing as I type

> >

>

>

[Guest guest]

So what is the solution for you?  I am glad the docs finally diagnosed what was

wrong.  The EE was mentioned (or lack thereof) in my endoscopy report.  By the

way, I always request a copy of all reports on all tests done on me, even though

I have them sent to all of my doctors (all four of them!)

 

From: billybaroo1958 <cajjz109@...>

Subject: [ ] Re: My asthma seems different...

Date: Sunday, October 12, 2008, 11:48 PM

For the people with reflux and a history of asthma and atopy....consider when

you are

ever given an endoscopy again to have biopsies down for Eosinophilic

Esophagitis. I will

tell you two years ago I had no problems with breathing since I was about 16. I

was 47

when my miserable process started. My lung functions went way down literally

over

night...and I was a marathoner and mountain climber. While my asthma didn't seem

to be

worse, my lung capacity and breathlessness were. The big think was couldn't take

a deep

breath. Not a quality of asthma. I went through two years of doctors scratching

their

heads, but admitting I had severe idiopathic atopy. My IgE was 295 and climbing.

So, to

cut to the chase, it was discovered I had a hiatal hernia and reflux. Anti-acid

meds did no

good. So, once again a mystery, until a specialist here in Los Angeles

concluded, due to

my atopy and asthma, I had EE. Biopsies were done, and my levels were 7x the

criteria

throughout my entire esophagus. Apparently, EE acts very much like asthma in

terms of

remodeling the lungs and esophagus. Two weeks ago it was discovered the

remodeling

had create a ring at my LES, that is were most of the eosinophils and mast cells

are. So,

every time I swallow food lodges and causes the cells to degranulate, thus

causing a

pseudo allergic reaction. But, my entire esophagus has been re-modeled. What the

causes

is muscular contractions when I swallow food, and consequently, difficulty

taking a breath.

Thought you might want to know.

> >

> > Mine is every day and chronic. For some reason, rescue inhalers do

> not

> > work for me. I have no choice but to use a nebulizer. My asthma is

> > not severe, I just can't breathe very deep and if I don't neb, it

> get

> > does get severe.

> >

> > I have a daily ritual:

> >

> > I Neb first thing in the morning with a mixture of xopenex,

> atrovent

> > and pulmicort. When it wears off 4 to 5 hours later, I neb again

> and

> > again adding up to about 4 to 5 times a day. I use Advair 500/50

> in

> > the mornings and evenings. It is so strange that hardly ever I am

> > awakened at night with asthma.

> >

> > I don't consider having an attack until my nebs stop working, then,

> > its a call to the doctors office.

> >

> > I also have 1/4 of my left lung that did not develop properly when

> I

> > was a child. It shows up on an x ray like nothing is there.

> >

> > Is anyone else like this?

> >

> > Doug

> > Group founder

> > nebbing as I type

> >

>

>

[Guest guest]

As far as controlling the build up of eosinophils im esophagus, and

coincidentally in my lungs, the solution has been Xolair. The FDA is

still in trials on Xolair for EE, but I have suggested the

Gastroenterologist submitt a medical brief on my results. I went

from 75-100/HPF eosinophils throughout the clinical areas of my

esophagus in May 07' to six months on Xolair and 0/HPF throughout my

entire esophagus in June 08'. So, at least for the most part my EE

was IgE induced. I also don't use inhaled corticosteroids anymore

for my lungs, and I rarely use a rescue inhaler. But, my asthma was

not as symptomatic as most on this site before Xolair. However, my

lung functions had fallen to about 75% of predicted. Now I am back

to where I used to be two years ago, which is about 88-90% of

predicted.

As for the re-modeling of my esophagus and Schatzki ring it is

anyone's guess. The only treatment is to surgcially break open the

ring (which I will do) to relieve the pain when swallowing food and

possibly repair the hiatal hernia. The latter is to try to prevent

the ring from coming back. But, the sensitivity of esophagus due to

re-modeling might be there forever. The trick through Xolair and

anti-acid meds is to not let it get worse. The odd thing is my

reflux is high, but the acid content is near normal. But, with EE

that is still no small deal.

I would never wish my situaition on anyone. It was very difficult

and frustrating to diagnose. Very difficult to treat. And, I truly

believe my life of asthma was a cake walk compared to EE.

> >

> > From: Jay McPherson <jmac98105 (DOT) com>

> > Subject: [ ] Re: My asthma seems different...

> >

> > Date: Sunday, October 12, 2008, 2:12 AM

> >

> > hi doug,

> > i share similar symptoms with you. it's kinda weird, i've had

> > asthma since i was 5 and i noticed that around 18 it went away

and i

> > was using an occasional couple puffs of combivent. symptom free

for

> > 3 years, age 21, i had a VERY difficult time deep breathing and

my

> > inhalers didn't do a thing for me. that's when i started with

> > xolair. i've been on it for 4 years and it has helped a little

but

> > i swear the symptoms i have now are totally different than when

i

> > was younger? i still have the hardest time getting a full deep

> > breatht in. my asthma specialist doesn't know what i'm talking

> > about. i think i have some other breathing condition.

> >

> > -jay

> >

> > --- In , " uca79iii " <uca79iii@ .>

wrote:

> > >

> > > Mine is every day and chronic. For some reason, rescue

inhalers do

> > not

> > > work for me. I have no choice but to use a nebulizer. My

asthma is

> > > not severe, I just can't breathe very deep and if I don't neb,

it

> > get

> > > does get severe.

> > >

> > > I have a daily ritual:

> > >

> > > I Neb first thing in the morning with a mixture of xopenex,

> > atrovent

> > > and pulmicort. When it wears off 4 to 5 hours later, I neb

again

> > and

> > > again adding up to about 4 to 5 times a day. I use Advair

500/50

> > in

> > > the mornings and evenings. It is so strange that hardly ever I

am

> > > awakened at night with asthma.

> > >

> > > I don't consider having an attack until my nebs stop working,

then,

> > > its a call to the doctors office.

> > >

> > > I also have 1/4 of my left lung that did not develop properly

when

> > I

> > > was a child. It shows up on an x ray like nothing is there.

> > >

> > > Is anyone else like this?

> > >

> > > Doug

> > > Group founder

> > > nebbing as I type

> > >

> >

> >