Xolair

[Guest guest]

Hi my name is Deborah, I was born with asthma, I've just read all your posts

about Xolair, I'm 49 years old and have never heard of this medication before in

my life, I suffer from COPD, Asthma and Sarcoidosis everyday of my life, I dont

have attacks, I go to bed not being able to breathe and I wake up not being able

to breathe, In Oct 2003, I almost died from my Asthma, But I was blessed to have

my son there and he made it to the hospital in time and I was saved, I was in

the hospital until Dec 2003, This was when my Asthma became its worst after

returning home, I live daily with it, I can barely make my bed in the morning,

Or get dressed without thinking I'm about to take my last breath, I'm on

theophylline, Prednisone, Accolate, (Because my insurance company refused to pay

for Singulair) I have three inhalers, Albuterol, Combivent, And a new one called

Spiriva, I also have a nebulizer, My doctor has diagnosed me with Emphysema, I

asked for the medications for Emphysema and he said there were none, That I

wasnt already taking or had taken in the past except for the new inhaler,

(spiriva) He gave me that from his office So I dont even know If my insurance

will pay for it yet, I have medicaid, But they dont pay for everything, I also

have Diabetes, You can imagine how high the prednisone keeps my sugar levels,

Half the time I can't see, As I read all of your posts, I gain some hope that

this new drug called Xolair would help me too, I went to my pharmacy website to

look up this new medicine and nothing came up, You see I have a doctors

appointment tomorrow and I can't wait to tell him about this medication, (Why

hasnt he mentioned it to me?) I wanted to print out something to take with me,

I'm going to try that website called curascript next, Is this medication for

Asthma or Allergies? I'm blessed with one child, He's 21 and has put his life

on hold for me, He's a good boy, He works everyday and checks on me all day

long, he comes home for lunch and I thank God for him, I have other family too,

But only my son knows what a hard time I'm having, and now I have found all of

you, I read a post about the prednisone tummy, I didnt know that prednisone

swells the stomach, does it? Or is it because the prednisone tricks you into

eating? I have the stomach of a nine month pregnant woman, No butt or thighs,

Just stomach, Its makes my life more miserable, I just wanted to introduce

myself to all of you, I will be reading your post and I'll let you know If I get

my hands on this new medicine, Thank you and take care of yourselves.

=D> Deborah

[Guest guest]

Hi Adah:

I have a pulmonologist who was giving me my Xolair shots my insurance was

paying for it. When I went on Medicare I had to find someone who would buy and

bill (my pumonologist was not will to do this). The nurse in his office hocked

me up with the sales rep. and she talked to another pulmonologist and she was

already buying and billing for other patients so she took me on. It's working

out fine.

Good luck

Kathy

tiredofsteroids <sitesee@...> wrote:

Hi Adah -

I have straight Medicare, no supplemental insurance except for

prescriptions. Xolair is covered under Medicare Part B and not under

Medicare Part D prescription coverage. I receive my Xolair at my

allergist's office and pay only a $20 administration fee for each

shot, nothing for the Xolair itself.

I believe whether you can receive Xolair this way depends on whether

your doctor is willing to obtain the Xolair via " buy and bill " ,

which some doctors won't do. If your allergist will not do this,

perhaps he/she can refer you to another doctor who will. I know that

my pulmonologist does this as well, so it doesn't necessarily have

to be an allergist.

Hope you can work this out -

Fran

--- In , " asthmatic50 " <asthmatic50@...>

wrote:

>

> I am new to the group and my allergist has suggested I go on

> xolair. Your responses and postings about xolair have been a big

> help to me. I am undecided because of the cost to me. Yes, I

have

> insurance but co-pay is 50% of the cost of the medicine so my

> monthly cost would add quite a bit to what I already have to pay.

> My husband and I are retired and also have medicare, but our

health

> insurance assured us their prescription coverage was as good or

> better than medicare coverage, so we stuck with our present

> insurance company.

>

> My greatest concern is that xolair will not do that much for me.

My

> asthma is very much under control probably 90% of the time and the

> only time I have moderately severe breathing problems are the

times

> I have a sinus infection which drifts down into my lungs. The

> infection usually starts as a result of hay fever from some

allergen

> count being off the chart as mountain cedar or mold ( I live in

> Central Texas--heart of mountain cedar and high mold counts when

it

> rains--lots of gulf moisture is pumped up our way). The majority

of

> the time I function at a very normal pace. I do have minor

> breathing problems in the mornings from time to time but rarely

bad

> enough to keep me from my usual morning duties.

>

> My asthma became moderately severe to severe about 20 years ago

and

> it took almost five years of working with my allergist to get it

> under control. I was on prednisone more than I was off of it for

> those years. Finally, my doctor gave me a regimen of meds and

> inhalers that really began to work. It still took the next five

> years for me to have more " breathe easy " days that the other

kinds.

> I did exercise from time to time as I could, but not on a regular

> basis. I continued to work (taught school) and we traveled every

> summer. There is a lot more to my story, but basically the last

few

> years I have had fewer and fewer times during the year when I have

> had an infection or a bad asthma attack. (Maybe not being around

> students so much has helped!) I will say that I have not had to

go

> to the emergency room since being treated by an allergist, but I

did

> make some " emergency " visits to his office often during those

first

> five years. (Before I began seeing him I had made three trips to

> the emergency room and three trips to an emergency med clinic next

> door to where I worked. The last such visit was about 20 years

ago.)

>

> Here are the meds I am on:

>

> fexofenadine (Allegra) 2X daily

> prilosec (for GERD) 2X daily

> albuterol rescue inhaler--I use it in the morning and that is

> usually it for the day although I never go anywhere without it!

> Spiriva

> Advair-250/50 1puff AM; 1puff PM

> Singulair-in the evening

>

> some years I only have to take prednisone once, but the last few

> years, twice a year has been the max and only if I get an

> infection. Oh--I used the nebulizer only when I have an infection

> and am congested and have a cough. I can certainly sympathize

with

> those of you who have to take it more often. The side effect for

me

> was weight I have not been able to completely lose and glaucoma

> which is now stabilized with medication.

>

> Last summer my allergist insisted I begin seeing a pulmonologist

and

> she ordered the hour long lung function test which revealed that

> only about 30% of my lungs function. I was really depressed for

> several weeks, but began reading all I could find on COPD. I kept

> seeing articles refer to pulmonary rehab--so I asked my doctor

about

> it and she prescribed it for me. It was very good for

> me....reminded me again of the importance of exercising when and

as

> often as I can. It gave me simple exercises to do even when I was

> having difficulty breathing--especially good breathing exercises.

> And they gave me exercises to do with hand weights. I am not as

> faithful as I should be about the exercises--except for the

> breathing exercises and the walking. I can walk thirty minutes on

> the treadmill at a clip that gives me one mile without any

breathing

> difficulty and I can talk without being short of breath.

>

> So the question is still.....how much will the xolair help and I

> know that is a decision for me and my doctor. But I really have

> appreciated all of the feedback I've read on your experiences with

> the drug.

>

> One last thing I think I should share. My younger sister had

asthma

> all of her life. She died at age 45--not from asthma, but from

> heart damage done by some of the meds she had to take (she was

born

> in 1940--not as many meds for asthma in her early years as we have

> now) and just the strain on her heart of all of those years of

hard

> breathing. But she did live a full life anyway!

>

> Any suggestions about taking the xolair will be most welcome and

> thanks for your patience with my long posting.

>

> Adah

>

__________________________________________________

[Guest guest]

I spent all of Monday morning on the phone with the pharmaceutical

company, with SPOC and with the nurse in my doctor's office. The

bottom line is that my doctor has five or six patients he is

planning to put on xolair, but he is not sure he will buy and bill

for the medicare. If he decides not to do so, his nurse told me

that there is an asthma clinic here in town who is already doing

that for a large group of patients and will do that for me if my

doctor doesn't. He would still monitor me and be my primary

allergist. I have not seen my pulmonologist since I saw my

allergist, but I am rather sure she doesn't do this sort of

medicating. I am waiting for my doctor to call me back to see

what step I take next. I have the form to send in to SPOC. From

what my docs nurse said, with medicare and my supplemental, I

shouldn't have to pay anything.

Thanks for all of your help and suggestions. I would not have

thought to ask about medicare had you not suggested it.

And Doug--good news that you are doing so much better. Your report

on xolair also encouraged me.

> >

> > I am new to the group and my allergist has suggested I go on

> > xolair. Your responses and postings about xolair have been a big

> > help to me. I am undecided because of the cost to me. Yes, I

> have

> > insurance but co-pay is 50% of the cost of the medicine so my

> > monthly cost would add quite a bit to what I already have to

pay.

> > My husband and I are retired and also have medicare, but our

> health

> > insurance assured us their prescription coverage was as good or

> > better than medicare coverage, so we stuck with our present

> > insurance company.

> >

> > My greatest concern is that xolair will not do that much for me.

> My

> > asthma is very much under control probably 90% of the time and

the

> > only time I have moderately severe breathing problems are the

> times

> > I have a sinus infection which drifts down into my lungs. The

> > infection usually starts as a result of hay fever from some

> allergen

> > count being off the chart as mountain cedar or mold ( I live in

> > Central Texas--heart of mountain cedar and high mold counts when

> it

> > rains--lots of gulf moisture is pumped up our way). The majority

> of

> > the time I function at a very normal pace. I do have minor

> > breathing problems in the mornings from time to time but rarely

> bad

> > enough to keep me from my usual morning duties.

> >

> > My asthma became moderately severe to severe about 20 years ago

> and

> > it took almost five years of working with my allergist to get it

> > under control. I was on prednisone more than I was off of it for

> > those years. Finally, my doctor gave me a regimen of meds and

> > inhalers that really began to work. It still took the next five

> > years for me to have more " breathe easy " days that the other

> kinds.

> > I did exercise from time to time as I could, but not on a

regular

> > basis. I continued to work (taught school) and we traveled every

> > summer. There is a lot more to my story, but basically the last

> few

> > years I have had fewer and fewer times during the year when I

have

> > had an infection or a bad asthma attack. (Maybe not being around

> > students so much has helped!) I will say that I have not had to

> go

> > to the emergency room since being treated by an allergist, but I

> did

> > make some " emergency " visits to his office often during those

> first

> > five years. (Before I began seeing him I had made three trips to

> > the emergency room and three trips to an emergency med clinic

next

> > door to where I worked. The last such visit was about 20 years

> ago.)

> >

> > Here are the meds I am on:

> >

> > fexofenadine (Allegra) 2X daily

> > prilosec (for GERD) 2X daily

> > albuterol rescue inhaler--I use it in the morning and that is

> > usually it for the day although I never go anywhere without it!

> > Spiriva

> > Advair-250/50 1puff AM; 1puff PM

> > Singulair-in the evening

> >

> > some years I only have to take prednisone once, but the last few

> > years, twice a year has been the max and only if I get an

> > infection. Oh--I used the nebulizer only when I have an

infection

> > and am congested and have a cough. I can certainly sympathize

> with

> > those of you who have to take it more often. The side effect for

> me

> > was weight I have not been able to completely lose and glaucoma

> > which is now stabilized with medication.

> >

> > Last summer my allergist insisted I begin seeing a pulmonologist

> and

> > she ordered the hour long lung function test which revealed that

> > only about 30% of my lungs function. I was really depressed for

> > several weeks, but began reading all I could find on COPD. I

kept

> > seeing articles refer to pulmonary rehab--so I asked my doctor

> about

> > it and she prescribed it for me. It was very good for

> > me....reminded me again of the importance of exercising when and

> as

> > often as I can. It gave me simple exercises to do even when I

was

> > having difficulty breathing--especially good breathing

exercises.

> > And they gave me exercises to do with hand weights. I am not as

> > faithful as I should be about the exercises--except for the

> > breathing exercises and the walking. I can walk thirty minutes

on

> > the treadmill at a clip that gives me one mile without any

> breathing

> > difficulty and I can talk without being short of breath.

> >

> > So the question is still.....how much will the xolair help and I

> > know that is a decision for me and my doctor. But I really have

> > appreciated all of the feedback I've read on your experiences

with

> > the drug.

> >

> > One last thing I think I should share. My younger sister had

> asthma

> > all of her life. She died at age 45--not from asthma, but from

> > heart damage done by some of the meds she had to take (she was

> born

> > in 1940--not as many meds for asthma in her early years as we

have

> > now) and just the strain on her heart of all of those years of

> hard

> > breathing. But she did live a full life anyway!

> >

> > Any suggestions about taking the xolair will be most welcome and

> > thanks for your patience with my long posting.

> >

> > Adah

> >

>

>

>

>

>

> __________________________________________________

>

[Guest guest]

<<And Doug--good news that you are doing so much better. Your report

on xolair also encouraged me.>>

Thank you! You are most welcome

Doug