RE: my horror story before Xolair

[Guest guest]

,

I am very glad you are doing better. It is not fun trying to breathe

when you have complications as you described in your post. I did not

have the severe asthma as you described but I have had constant problems

with tightness, coughing and zillions of pills each day.

I have to admit, like you XOLAIR has helped me tremendously. I have had

to go into the doctors office 5 times now and had a shot in each arm

twice a month. I am just now feeling better than I have in a long time.

I hope this drug makes you feel better very soon. Breathing well can be

very addictive once you get better.

I have just started using a CPAP machine about 5 days ago. I did not

think it would work at first.

Now, it seems to be allowing me to relax more and I seem to be getting a

better night's sleep. It was difficult at first because I had to learn

to relax. The doctor does a sleep study to determine the settings for

force of air coming out of the machine. Once this is done you have to

learn how to breathe. Breathing in is rather easy. It becomes more

difficult when breathig out because you have to compete with the force

of air being blown out the mask. It seems the more I get used to it

the more relaxed I become. You might get your doctor to recommend this

for your sleep.

Let us know how you are getting along.

________________________________

From: [mailto: ]

On Behalf Of creepycaddy79

Sent: Sunday, March 26, 2006 7:51 PM

Subject: [ ] my horror story before Xolair

Before Xolair I was a mess. I could barely get out of bed and make

it to the bathroom because my chest felt so tight. I was on a high

dose of prednisone for months, taking my neb four times per day, on

Advair 500/50 twice per day, on Foradil, singular, clarinex, and

albuterol- all at the same time. and because I have slight pectus

excavatum in my chest, my overinflated lungs sandwiched my heart. I

had flutters and mitral valve prolapse in my heart. also, my resting

heart rate was too high and I was having shakes. I had restlessness

and immense trouble sleeping. I actually did not want to fall

asleep because I feared I would stop breathing. I cried a lot and

felt hopeless. I felt like i must be the only person with this

problem. going to the ER was pointless. they would say that I have

overinflated lungs and that's common among asthma sufferers. my

oxygen level was usually ok, so they didn't give me anything. well,

I was already on EVERYTHING anyway.

I would appreciate your time taken to read this. there just might be

something in here that you identify with.

I'm , 23, and from Chicago. I've suffered from severe

asthma and allergies all my life. however, my symptoms improved

greatly over my teenage years.

I went to work in an auto shop in my late teens. the facility was

small and built in the '50's. it had no recirculating ventilation

system and only an unreliable crappy heater for winter. when

possible we kept the 2 bay doors open. I worked there for about 5

years with no increased symptoms. during my 5th year there, I began

to have feelings of tightness in my chest for no reason at all. I

would be sitting down and have this happen. once I even had to leave

to make a trip to the doctor for a neb. I felt a pressure in the

center of my chest and felt labored to take breaths. as time went

by, my symptoms got worse. I noticed that I actually showed very

little response to fast acting rescue inhalers, even the neb.

although, I'm allergic to chemicals and fumes. I really did not

think my condition was related to my job all that much. I had worked

there for years with no problems. and I wasn't having attacks- which

is what usually starts to happen when I come in contact with a

chemical fume. these symptoms were very different from anything

previous.

my general physician had been successfully controlling my asthma for

years. I did not respond to increased inhaled steroid dosage and

short term prednisone. he did chest x-rays and diagnosed me with

pneumonia. I was on 2 courses of horse pill antibiotics. they gave

me digestive problems, make my mouth taste like a metal spoon, and

DID NOT improve my asthma at all. this took almost 2 months. I was

still getting worse. I had my first ER visit in over 10 years.

he said I should consider going back to my childhood allergist for

treatment. that doctor only put me on prednisone, some different

inhalers, and a neb. I showed very little improvement. I felt the

doctor did not give me the attention I needed.

keep in mind that I was still dragging myself through work at my

job. but, I did go down to part-time. I needed to pay for all the

meds and doctors. I brought my neb to work with me and had to stop

working at times because it was too difficult.

so, I went to my parents' family doctor who treated my dad

successfully for his very mild asthma and severe sinus problems. he

continued my prednisone and basically didn't have too many answers,

he finally gave up after another ER visit, and recommended me to his

pulmonologist colleague. coincidentally, around the same time, that

pulmonologist had also been recommended by a client of my mother.

this pulmonologist diagnosed me with severe, constant allergic

asthma. I had been apparently having a constant allergic reaction to

something I was breathing in on a regular basis. he said I had

overinflated lungs, pectus excavatum, high levels of IgE- all

contributing to my symptoms. he previously weaned me down to

minimal prednisone so that he could take the IgE test. so, I

started Xolair in 2004 and have had more than considerable

improvement.

however, in January of 2005, my BCBS PPO abruptly stopped coverage.

my doctor and I uncovered that there was some bad business between

BCBS and Caremark. BCBS was now using a different pharmacy. BCBS

used that to say I had to reapply for Xolair coverage. We did and

went through the same steps as we initially did in 2004. we kept

getting refused despite providing all the additional tests and

documents they asked for. they just kept saying the guidelines for

Xolair coverage are more strict now and I did not show evidence of

having allergies. that is insane! I couldn't believe this was

happening. I wanted to know if there were others with this problem.

I guess there are. I was able to get full coverage many months later

through a foundation working with Genetech. Therefore, my condition

started to decline with only having 4 Xoliar treatments prior to

cancelled coverage. as you may know, this stuff(Xolair) takes more

than 4 visits to show noticeable change.

but, I'm still on it- 2 injections, once per month. I'm now also

taking Advair 250/50, singular, clarinex, and albuterol as needed. I

feel so much better and am still starting to get back into the swing

of things. I'm so lucky to have had Xolair approved so that it was

available to me when I needed it. I hate to even think what

would've happened without it.

I had to quit my job working on cars. I'm currently trying to get

back to school to make a career change to fashion buyer. and I have

a wonderful fiance who stuck by me through this and so much more. I

hope that someone who has read my story can benefit from what I've

been through or at least gain insight into what life is like when

asthma is not properly controlled.

[Guest guest]

,

Your story was very touching. I'm glad to hear you are feeling better. I've

had moderate, persistant asthma for 20 years and after reading stories like

yours I am so grateful my asthma isn't that bad. Hang in there and get well!!

Where in Chicago do you live. I live in the South Burbs of Chicago.

creepycaddy79 <creepycaddy@...> wrote:

Before Xolair I was a mess. I could barely get out of bed and make

it to the bathroom because my chest felt so tight. I was on a high

dose of prednisone for months, taking my neb four times per day, on

Advair 500/50 twice per day, on Foradil, singular, clarinex, and

albuterol- all at the same time. and because I have slight pectus

excavatum in my chest, my overinflated lungs sandwiched my heart. I

had flutters and mitral valve prolapse in my heart. also, my resting

heart rate was too high and I was having shakes. I had restlessness

and immense trouble sleeping. I actually did not want to fall

asleep because I feared I would stop breathing. I cried a lot and

felt hopeless. I felt like i must be the only person with this

problem. going to the ER was pointless. they would say that I have

overinflated lungs and that's common among asthma sufferers. my

oxygen level was usually ok, so they didn't give me anything. well,

I was already on EVERYTHING anyway.

I would appreciate your time taken to read this. there just might be

something in here that you identify with.

I'm , 23, and from Chicago. I've suffered from severe

asthma and allergies all my life. however, my symptoms improved

greatly over my teenage years.

I went to work in an auto shop in my late teens. the facility was

small and built in the '50's. it had no recirculating ventilation

system and only an unreliable crappy heater for winter. when

possible we kept the 2 bay doors open. I worked there for about 5

years with no increased symptoms. during my 5th year there, I began

to have feelings of tightness in my chest for no reason at all. I

would be sitting down and have this happen. once I even had to leave

to make a trip to the doctor for a neb. I felt a pressure in the

center of my chest and felt labored to take breaths. as time went

by, my symptoms got worse. I noticed that I actually showed very

little response to fast acting rescue inhalers, even the neb.

although, I'm allergic to chemicals and fumes. I really did not

think my condition was related to my job all that much. I had worked

there for years with no problems. and I wasn't having attacks- which

is what usually starts to happen when I come in contact with a

chemical fume. these symptoms were very different from anything

previous.

my general physician had been successfully controlling my asthma for

years. I did not respond to increased inhaled steroid dosage and

short term prednisone. he did chest x-rays and diagnosed me with

pneumonia. I was on 2 courses of horse pill antibiotics. they gave

me digestive problems, make my mouth taste like a metal spoon, and

DID NOT improve my asthma at all. this took almost 2 months. I was

still getting worse. I had my first ER visit in over 10 years.

he said I should consider going back to my childhood allergist for

treatment. that doctor only put me on prednisone, some different

inhalers, and a neb. I showed very little improvement. I felt the

doctor did not give me the attention I needed.

keep in mind that I was still dragging myself through work at my

job. but, I did go down to part-time. I needed to pay for all the

meds and doctors. I brought my neb to work with me and had to stop

working at times because it was too difficult.

so, I went to my parents' family doctor who treated my dad

successfully for his very mild asthma and severe sinus problems. he

continued my prednisone and basically didn't have too many answers,

he finally gave up after another ER visit, and recommended me to his

pulmonologist colleague. coincidentally, around the same time, that

pulmonologist had also been recommended by a client of my mother.

this pulmonologist diagnosed me with severe, constant allergic

asthma. I had been apparently having a constant allergic reaction to

something I was breathing in on a regular basis. he said I had

overinflated lungs, pectus excavatum, high levels of IgE- all

contributing to my symptoms. he previously weaned me down to

minimal prednisone so that he could take the IgE test. so, I

started Xolair in 2004 and have had more than considerable

improvement.

however, in January of 2005, my BCBS PPO abruptly stopped coverage.

my doctor and I uncovered that there was some bad business between

BCBS and Caremark. BCBS was now using a different pharmacy. BCBS

used that to say I had to reapply for Xolair coverage. We did and

went through the same steps as we initially did in 2004. we kept

getting refused despite providing all the additional tests and

documents they asked for. they just kept saying the guidelines for

Xolair coverage are more strict now and I did not show evidence of

having allergies. that is insane! I couldn't believe this was

happening. I wanted to know if there were others with this problem.

I guess there are. I was able to get full coverage many months later

through a foundation working with Genetech. Therefore, my condition

started to decline with only having 4 Xoliar treatments prior to

cancelled coverage. as you may know, this stuff(Xolair) takes more

than 4 visits to show noticeable change.

but, I'm still on it- 2 injections, once per month. I'm now also

taking Advair 250/50, singular, clarinex, and albuterol as needed. I

feel so much better and am still starting to get back into the swing

of things. I'm so lucky to have had Xolair approved so that it was

available to me when I needed it. I hate to even think what

would've happened without it.

I had to quit my job working on cars. I'm currently trying to get

back to school to make a career change to fashion buyer. and I have

a wonderful fiance who stuck by me through this and so much more. I

hope that someone who has read my story can benefit from what I've

been through or at least gain insight into what life is like when

asthma is not properly controlled.