Re: Xolair Stats , allergic asthma, etc

May 17, 2007

your first part of you letter, I can relate to, as many others could I am sure.

in your latter half you stated " it took me like 15

> months or so to see results from Xolair, it's far better as far as

> I'm concerned than sitting in a hospital bed - which I've done

> numerous times and it is NOT fun.

> Yes with Xolair you have to have patience, but the benefits for

> me, and I would think anyone who has been on it for a while, far

> outweigh the waiting part. "

You are right on the money. Thank you for sharing what you have shared.

I get my X-shot next week. This has been a tough time. The smoke from the

wildfires

dissipated, but one of my darling students sprayed perfume in the classroom. I

am home

now for two days. I Have been to the ER Monday and yesterday and the

asthma/allergist 2x

this week. The second visit he told me I had to get to the ER. The ER said next

visit I will be

admitted All from a spray of perfume in my classroom. My sub called, telling me

the girl

who sprayed it said I was over reacting and I don't really have asthma.

Kids...gotta love

them. The principal got a sub for me ASAP and told me to take care of the

asthma.

so now, I am home, doing treatments quite frequently, having the shakes, also on

the evil

candy. Hungry as anything for the munchies. I hate this

I am thinking to myself, how much worse would I be if I was not on the xolair?

It is not a

miracle drug to cure the asthma, but it certainly does help.

I have had asthma since I was 3. It has only gotten worse. I feel like a walking

pharmacy.

Probably when I die, my body will ever decay. I will be well preserved from all

the meds I

am on.

Those who are reading, at this time, I'd like to thank yo for your patience

reading. My

hands are shaking, my mind going in a million directions. I am trying to stay

focused.

Xolair: Allergic asthma. I never heard that term since I was placed on the

xolair. I have

been told I have chronic bronchial asthma. All of a sudden it is now allergic?

Maybe I am

missing something. Maybe this is something the pharmaceuticals and physicians

are

coining as a term. I don't know.

I do have a question though. (sorry this is long winded)

When I went to the allergist earlier this week, my complain was I was air

hungry. I feel like

there is a 50 lb brick on my chest. My lower back, ower lung region is sore. He

said from

all the exertion of the labored breathing. He termed me on monday as sighing

dysemia.

Meaning, and if anyone knows more about this, please let me know. Says I sigh in

a

reaction to anxiety. He looked at my file from where I previously lived. My dr

there

documented well he said.

This dr, said many of the meds are a link to depression. There can be a high

rate of

depression in asthmatics. I do not know if that is true. My standpoint, I lost

friends on

9/11. They worked in the WTC. friends commited suicide because of the tragedy.

and

other losses and sadness I have experienced of high intensity. Life moves on and

I deal.

But has anyone heard of depression being linked to asthma and I like to know

thoughts on

the term allergic asthma.

For those who have read this lengthy post, thank you.

now back to a treatment. Have a good day

> > >

> > > Since I'm not showing any improvement at all after 2+ months on

> > Xolair

> > > and, in fact, seem to be feeling worse in some ways (worse body

> > aches,

> > > numbness and tingling in extremities, sinusitis, colds, weight

> > gain) I

> > > looked up some statistics on Xolair. I found this from the

> Canada

> > > Respiratory Journal in 2006:

> > >

> > > ... in the evaluation by Bousquet et al ... , 38% of patients had

> a

> > > response by 4 weeks and 64% by 16 weeks. Fewer than two-thirds of

> > > patients who responded at 16 weeks had responded at four weeks;

> 87%

> > had

> > > shown a response by 12 weeks.

> > >

> > > I do know that IgE can be accurately measured while on Xolair -

> > that was

> > > in an April 2007 journal of clinical allergy and immunology.

> > Obviously

> > > some people need more based on their IgE and probably other

> factors

> > and

> > > some need less. I'm really concerned about what this is doing to

> > me.

> > > It is completely unacceptable to expect anyone to blindly accept

> a

> > drug

> > > not working for many months. I certainly would not take an

> aspirin

> > for

> > > a headache now and be willing to wait six months for it to work.

> > If it

> > > doesn't work, there's something wrong and it needs to be

> > investigated.

> > > That isn't happening with Xolair. I am no little bit annoyed

> about

> > it.

> > > Genentech only puts out the party line - they're not answering

> some

> > > serious questions.

> > >

May 18, 2007

I'm so sorry to hear what a tough time you're having. I hope you turn

the corner and bounce back soon.

Allergic asthma simply means your asthma is at least partly triggered

by allergies. Most allergic reactions involve IgE, which is what

Xolair binds to in order to prevent the allergic reaction. So Xolair

is only effective against allergic asthma in which the allergies

involve IgE and a patient must have allergic asthma in order to be

treated with Xolair. That's why you're hearing that language used by

docs and Genentech. But the phrase " allergic asthma " has been around

for a very long time and has always been very relevant to treatment

in that effective treatment of underlying allergies can improve the

asthma.

There are other types of asthma which can occur alone or in

combination with allergic asthma. A very common one is that triggered

by gastro-esophageal reflux (backflow of stomach fluids into the

esophagus and up into the trachea [windpipe], then from there into

the lungs as a trigger for asthma). Since this type does not involve

IgE, Xolair is not effective against it. Many patients with allergic

asthma also have asthma triggered by reflux; in this case, the Xolair

will only be effective against the asthma component triggered by

allergies.

Also, many patients with allergic asthma can be generally well

controlled, but lose control when they have respiratory infections.

This component of asthma is also not directly effected by Xolair,

although if Xolair is controlling the underlying allergic asthma

well, it's possible (but not alway true) that the infectious flare-

ups will not be as severe as previously.

Finally, some patients have no identifiable trigger for their asthma;

this is called intrinsic asthma and also does not involve IgE, so it

also cannot be improved by Xolair.

These different types of asthma can explain why someone has only a

partial response or even no response to Xolair even though they do

have allergic asthma. Other asthma meds all work the same way against

each type of asthma, at the levels of reducing airway muscle

reactivity (bronchodilators) and inflammation (steroids). The reflux

component can be partially or nearly completely controlled by

medications like Prilosec, Nexium, Previcid and other anti-acid-

secretory meds, as well as Reglan which can tighten the sphincter

(valve) between the stomach an esophagus, thus reducing reflux. But,

again, Xolair will only be effective again IgE-mediated allergic

asthma.

Fran

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

wrote:

>

> your first part of you letter, I can relate to, as many others

could I am sure.

>

> in your latter half you stated " it took me like 15

> > months or so to see results from Xolair, it's far better as far

as

> > I'm concerned than sitting in a hospital bed - which I've done

> > numerous times and it is NOT fun.

> > Yes with Xolair you have to have patience, but the benefits

for

> > me, and I would think anyone who has been on it for a while, far

> > outweigh the waiting part. "

>

> You are right on the money. Thank you for sharing what you have

shared.

>

> I get my X-shot next week. This has been a tough time. The smoke

from the wildfires

> dissipated, but one of my darling students sprayed perfume in the

classroom. I am home

> now for two days. I Have been to the ER Monday and yesterday and

the asthma/allergist 2x

> this week. The second visit he told me I had to get to the ER. The

ER said next visit I will be

> admitted All from a spray of perfume in my classroom. My sub

called, telling me the girl

> who sprayed it said I was over reacting and I don't really have

asthma. Kids...gotta love

> them. The principal got a sub for me ASAP and told me to take care

of the asthma.

>

> so now, I am home, doing treatments quite frequently, having the

shakes, also on the evil

> candy. Hungry as anything for the munchies. I hate this

>

> I am thinking to myself, how much worse would I be if I was not on

the xolair? It is not a

> miracle drug to cure the asthma, but it certainly does help.

>

> I have had asthma since I was 3. It has only gotten worse. I feel

like a walking pharmacy.

> Probably when I die, my body will ever decay. I will be well

preserved from all the meds I

> am on.

>

> Those who are reading, at this time, I'd like to thank yo for your

patience reading. My

> hands are shaking, my mind going in a million directions. I am

trying to stay focused.

>

> Xolair: Allergic asthma. I never heard that term since I was placed

on the xolair. I have

> been told I have chronic bronchial asthma. All of a sudden it is

now allergic? Maybe I am

> missing something. Maybe this is something the pharmaceuticals and

physicians are

> coining as a term. I don't know.

>

> I do have a question though. (sorry this is long winded)

> When I went to the allergist earlier this week, my complain was I

was air hungry. I feel like

> there is a 50 lb brick on my chest. My lower back, ower lung

region is sore. He said from

> all the exertion of the labored breathing. He termed me on monday

as sighing dysemia.

> Meaning, and if anyone knows more about this, please let me know.

Says I sigh in a

> reaction to anxiety. He looked at my file from where I previously

lived. My dr there

> documented well he said.

>

> This dr, said many of the meds are a link to depression. There can

be a high rate of

> depression in asthmatics. I do not know if that is true. My

standpoint, I lost friends on

> 9/11. They worked in the WTC. friends commited suicide because of

the tragedy. and

> other losses and sadness I have experienced of high intensity. Life

moves on and I deal.

>

> But has anyone heard of depression being linked to asthma and I

like to know thoughts on

> the term allergic asthma.

>

> For those who have read this lengthy post, thank you.

>

> now back to a treatment. Have a good day

>

> > > >

> > > > Since I'm not showing any improvement at all after 2+ months

on

> > > Xolair

> > > > and, in fact, seem to be feeling worse in some ways (worse

body

> > > aches,

> > > > numbness and tingling in extremities, sinusitis, colds,

weight

> > > gain) I

> > > > looked up some statistics on Xolair. I found this from the

> > Canada

> > > > Respiratory Journal in 2006:

> > > >

> > > > ... in the evaluation by Bousquet et al ... , 38% of patients

had

> > a

> > > > response by 4 weeks and 64% by 16 weeks. Fewer than two-

thirds of

> > > > patients who responded at 16 weeks had responded at four

weeks;

> > 87%

> > > had

> > > > shown a response by 12 weeks.

> > > >

> > > > I do know that IgE can be accurately measured while on

Xolair -

> > > that was

> > > > in an April 2007 journal of clinical allergy and immunology.

> > > Obviously

> > > > some people need more based on their IgE and probably other

> > factors

> > > and

> > > > some need less. I'm really concerned about what this is

doing to

> > > me.

> > > > It is completely unacceptable to expect anyone to blindly

accept

> > a

> > > drug

> > > > not working for many months. I certainly would not take an

> > aspirin

> > > for

> > > > a headache now and be willing to wait six months for it to

work.

> > > If it

> > > > doesn't work, there's something wrong and it needs to be

> > > investigated.

> > > > That isn't happening with Xolair. I am no little bit annoyed

> > about

> > > it.

> > > > Genentech only puts out the party line - they're not

answering

> > some

> > > > serious questions.

> > > >

May 18, 2007

Those are GREAT points Fran!

I used to have to take Prilosec to control it. But I

am not on anything now because I don't have the

symptoms. I know Xolair isn't preventing GERD. My

doctor said that my GERD was probably cause by all of

the oral medications I was taking before I was on

Xolair. Just a smattering : Prednisone, Theophyline,

Singulair, Allegra 180. I swear I looked like a

walking pharmacy! Point is, I don't have GERD anymore.

--- tiredofsteroids <sitesee@...> wrote:

> I'm so sorry to hear what a tough time you're

> having. I hope you turn

> the corner and bounce back soon.

>

> Allergic asthma simply means your asthma is at least

> partly triggered

> by allergies. Most allergic reactions involve IgE,

> which is what

> Xolair binds to in order to prevent the allergic

> reaction. So Xolair

> is only effective against allergic asthma in which

> the allergies

> involve IgE and a patient must have allergic asthma

> in order to be

> treated with Xolair. That's why you're hearing that

> language used by

> docs and Genentech. But the phrase " allergic asthma "

> has been around

> for a very long time and has always been very

> relevant to treatment

> in that effective treatment of underlying allergies

> can improve the

> asthma.

>

> There are other types of asthma which can occur

> alone or in

> combination with allergic asthma. A very common one

> is that triggered

> by gastro-esophageal reflux (backflow of stomach

> fluids into the

> esophagus and up into the trachea [windpipe], then

> from there into

> the lungs as a trigger for asthma). Since this type

> does not involve

> IgE, Xolair is not effective against it. Many

> patients with allergic

> asthma also have asthma triggered by reflux; in this

> case, the Xolair

> will only be effective against the asthma component

> triggered by

> allergies.

>

> Also, many patients with allergic asthma can be

> generally well

> controlled, but lose control when they have

> respiratory infections.

> This component of asthma is also not directly

> effected by Xolair,

> although if Xolair is controlling the underlying

> allergic asthma

> well, it's possible (but not alway true) that the

> infectious flare-

> ups will not be as severe as previously.

>

> Finally, some patients have no identifiable trigger

> for their asthma;

> this is called intrinsic asthma and also does not

> involve IgE, so it

> also cannot be improved by Xolair.

>

> These different types of asthma can explain why

> someone has only a

> partial response or even no response to Xolair even

> though they do

> have allergic asthma. Other asthma meds all work the

> same way against

> each type of asthma, at the levels of reducing

> airway muscle

> reactivity (bronchodilators) and inflammation

> (steroids). The reflux

> component can be partially or nearly completely

> controlled by

> medications like Prilosec, Nexium, Previcid and

> other anti-acid-

> secretory meds, as well as Reglan which can tighten

> the sphincter

> (valve) between the stomach an esophagus, thus

> reducing reflux. But,

> again, Xolair will only be effective again

> IgE-mediated allergic

> asthma.

>

> Fran

>

> -- In , " meencantador "

> <meencantador@...>

> wrote:

> >

> > your first part of you letter, I can relate to,

> as many others

> could I am sure.

> >

> > in your latter half you stated " it took me like 15

>

> > > months or so to see results from Xolair, it's

> far better as far

> as

> > > I'm concerned than sitting in a hospital bed -

> which I've done

> > > numerous times and it is NOT fun.

> > > Yes with Xolair you have to have patience,

> but the benefits

> for

> > > me, and I would think anyone who has been on it

> for a while, far

> > > outweigh the waiting part. "

> >

> > You are right on the money. Thank you for sharing

> what you have

> shared.

> >

> > I get my X-shot next week. This has been a tough

> time. The smoke

> from the wildfires

> > dissipated, but one of my darling students sprayed

> perfume in the

> classroom. I am home

> > now for two days. I Have been to the ER Monday and

> yesterday and

> the asthma/allergist 2x

> > this week. The second visit he told me I had to

> get to the ER. The

> ER said next visit I will be

> > admitted All from a spray of perfume in my

> classroom. My sub

> called, telling me the girl

> > who sprayed it said I was over reacting and I

> don't really have

> asthma. Kids...gotta love

> > them. The principal got a sub for me ASAP and told

> me to take care

> of the asthma.

> >

> > so now, I am home, doing treatments quite

> frequently, having the

> shakes, also on the evil

> > candy. Hungry as anything for the munchies. I hate

> this

> >

> > I am thinking to myself, how much worse would I be

> if I was not on

> the xolair? It is not a

> > miracle drug to cure the asthma, but it certainly

> does help.

> >

> > I have had asthma since I was 3. It has only

> gotten worse. I feel

> like a walking pharmacy.

> > Probably when I die, my body will ever decay. I

> will be well

> preserved from all the meds I

> > am on.

> >

> > Those who are reading, at this time, I'd like to

> thank yo for your

> patience reading. My

> > hands are shaking, my mind going in a million

> directions. I am

> trying to stay focused.

> >

> > Xolair: Allergic asthma. I never heard that term

> since I was placed

> on the xolair. I have

> > been told I have chronic bronchial asthma. All of

> a sudden it is

> now allergic? Maybe I am

> > missing something. Maybe this is something the

> pharmaceuticals and

> physicians are

> > coining as a term. I don't know.

> >

> > I do have a question though. (sorry this is long

> winded)

> > When I went to the allergist earlier this week, my

> complain was I

> was air hungry. I feel like

> > there is a 50 lb brick on my chest. My lower

> back, ower lung

> region is sore. He said from

> > all the exertion of the labored breathing. He

> termed me on monday

> as sighing dysemia.

> > Meaning, and if anyone knows more about this,

> please let me know.

> Says I sigh in a

> > reaction to anxiety. He looked at my file from

> where I previously

> lived. My dr there

> > documented well he said.

> >

> > This dr, said many of the meds are a link to

> depression. There can

> be a high rate of

> > depression in asthmatics. I do not know if that is

> true. My

> standpoint, I lost friends on

> > 9/11. They worked in the WTC. friends commited

> suicide because of

> the tragedy. and

> > other losses and sadness I have experienced of

> high intensity. Life

>

=== message truncated ===

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May 19, 2007

Fran,

Thank you for such a coherent outline of the types of asthma. I am always

puzzling over why I have a reaction and I guess it boils down to intrinsic

asthma. And that's why xolair is not helping me on some levels. Thank you

for pointing out these differences, it helps to understand.

Just yesterday I wondered out loud to my poor mom, why I have to be plagued

with a terrible coughing fit with wheezing, tightening, etc. and use my

albuterol inhaler all because I just drive my car. It's hot here in AZ (105

already!) so of course the AC has to go on right away when you get in the

car. That cold air blowing at me starts me up regularly. So does drinking an

iced or cool drink. Sometimes even blowing wind or air that is not so cold

(outdoors or a fan in the house) will do the same thing. So very annoying

and hard to understand how my lungs can be so sensitive to temperature

change and air velocity.

It's nothing new .... but sure would be nice to have a way avoid it without

sweating and dehydrating trying to avoid anything cool or wet or breezy.

I have always thought the cold component to my asthma was allergic but after

your post I'm thinking now it has to be otherwise. I mean how can you be

allergic to the cold? I must just be hypersensitive to it. I know it (cold

temp) has caused me to have pretty terrible outbreaks of welts on my skin

at times in the past, so I guess it's not such a leap that my lungs react

the same drastic way. I can rationalize it but I still feel like a freak.

I have often thought if only I could be put in a coma for about 3 months

that during that time, maybe my body would relearn how to respond more

normally to stimuli. I really wonder if part of our asthma response is the

result of ingrained muscle/tissue memory. I began thinking about this when I

had a surgery 10 yrs ago and found that with general anesthesia, I had NO

problem with any coughing or other asthma symptoms during or after for quite

a long time. I had a conversation with my Dr and he said it was quite common

that asthma would abate under anesthesia. I know it's a severe thought but

still holds a probably irrational appeal - to go to sleep and have these

faulty lungs reprogram their attitudes in a few weeks.

Maybe they'll find something for the rest of our asthma issues. Couldn't

happen too soon....in the meantime at least xolair can hit some of it.

Thanks again for your contributions here.

Leena

Posted by: " tiredofsteroids " sitesee@...

<sitesee@...?Subject=+Re%3A%20Xolair%20Stats%20%2C%20allergic%20asthma\

%2C%20etc>

tiredofsteroids <tiredofsteroids> Thu May 17, 2007

6:37 pm (PST) I'm so sorry to hear what a tough time you're having. I hope

you turn