Re: Plug pulled on my Xolair :(

January 4, 2007

Pamela,

I just want to share my experience with you.....my IgE is only 44. I started

on 150 every month for a year and didn't notice much of an improvement. I told

my doc I'd like to stop taking it and see what happens. When I did I became

very sick. I went back on it 2 weeks later and the sickness went away.

Unfortunately, on that dose, Xolair was only working about 50% of the time. My

doc's office called Genentech and they suggested I increase the dose to 150 and

75 alternating every two weeks. That dose has literally been the silver bullet.

I've had some episodes since being on that dose but they tend to occur when I

have an infection and/or when I'm at the end of the dose, like yesterday.

Perhaps you need a dose adjustment rather than stopping it. If the drug is

actually working you should get sicker once you stop completely.

Best of luck!

pjboucher2001 <pjboucher2001@...> wrote:

I went to see my allergist/immunologist today. She is the

prescribing physician for my Xolair. She is advising my insurance

company that I will no longer be requiring Xolair. Apparently my IGE

is 59 (I thought it was 91 and I was close to the next dosage level),

and there has been no improvement in 1 year on Xolair. If anything,

I have been on prednisone more in the last year than in previous

years. My asthma tends to flare when I get colds/infections (which

is always!!), vs a reaction to a particular allergen.

I am on numerous others meds and she has told me that she is not

comfortable treating someone with as severe asthma as mine. I am

currently on 10mg of the evil candy and she wanted me to go on a

higher dose, but I told her I was quite happy where I was! She

didn't push it, but I do go see my family dr. tomorrow.....the pred

doesn't really seem to be helping me much, so why put up with all the

side effects.

The good thing out of this is that she is going to refer me to a

respirologist, but the wait list in Kingston, Ontario could be quite

long as I believe there are only 2 of them. She also brought up

whether I might have something else, like bronchiectasis (which

someone just mentioned in a previous post!).

I hope that you will all let me remain a member on this board...I

have met some great people here and would still like to be in the

loop......you never know....I might get Xolair approval again

sometime soon!!!

Thanks so much!

Pamela

__________________________________________________

January 4, 2007

Were you taking the xolair once or twice a month?

I really flare when I am sick. You are wise about the evil candy.

But I have getting ready for my 4th injection, and did not develop pneumonia

with this latest virus, mountain cedar season.

Do you use a saline rinse such as sinus rinse? any pets?

I have bronchiactesis as well as asthma.

Has anyone ever done a ct scan of your lungs. Bronchiactesis does show up

sometimes on xrays.

Do you have a " clean room " to sleep in etc.? air filter in there, etc.?

Jane

pjboucher2001 <pjboucher2001@...> wrote:

I went to see my allergist/immunologist today. She is the

prescribing physician for my Xolair. She is advising my insurance

company that I will no longer be requiring Xolair. Apparently my IGE

is 59 (I thought it was 91 and I was close to the next dosage level),

and there has been no improvement in 1 year on Xolair. If anything,

I have been on prednisone more in the last year than in previous

years. My asthma tends to flare when I get colds/infections (which

is always!!), vs a reaction to a particular allergen.

I am on numerous others meds and she has told me that she is not

comfortable treating someone with as severe asthma as mine. I am

currently on 10mg of the evil candy and she wanted me to go on a

higher dose, but I told her I was quite happy where I was! She

didn't push it, but I do go see my family dr. tomorrow.....the pred

doesn't really seem to be helping me much, so why put up with all the

side effects.

The good thing out of this is that she is going to refer me to a

respirologist, but the wait list in Kingston, Ontario could be quite

long as I believe there are only 2 of them. She also brought up

whether I might have something else, like bronchiectasis (which

someone just mentioned in a previous post!).

I hope that you will all let me remain a member on this board...I

have met some great people here and would still like to be in the

loop......you never know....I might get Xolair approval again

sometime soon!!!

Thanks so much!

Pamela

__________________________________________________

January 5, 2007

Pamela,

I think I can speak for and Doug that we would like for you to

stay. It would be good to have a member for whom Xolair didn't work

who can speak to what other things her doc and she are trying and

why. It sounds like you have some asthma triggers that are not

allergic related, which would certainly not respond to Xolair. At

any rate, take good care of yourself and keep us posted on how you

are doing.

Addy

Group co-owner

>

> I went to see my allergist/immunologist today. She is the

> prescribing physician for my Xolair. She is advising my insurance

> company that I will no longer be requiring Xolair. Apparently my

IGE

> is 59 (I thought it was 91 and I was close to the next dosage

level),

> and there has been no improvement in 1 year on Xolair. If

anything,

> I have been on prednisone more in the last year than in previous

> years. My asthma tends to flare when I get colds/infections (which

> is always!!), vs a reaction to a particular allergen.

>

> I am on numerous others meds and she has told me that she is not

> comfortable treating someone with as severe asthma as mine. I am

> currently on 10mg of the evil candy and she wanted me to go on a

> higher dose, but I told her I was quite happy where I was! She

> didn't push it, but I do go see my family dr. tomorrow.....the pred

> doesn't really seem to be helping me much, so why put up with all

the

> side effects.

>

> The good thing out of this is that she is going to refer me to a

> respirologist, but the wait list in Kingston, Ontario could be

quite

> long as I believe there are only 2 of them. She also brought up

> whether I might have something else, like bronchiectasis (which

> someone just mentioned in a previous post!).

>

> I hope that you will all let me remain a member on this board...I

> have met some great people here and would still like to be in the

> loop......you never know....I might get Xolair approval again

> sometime soon!!!

>

> Thanks so much!

>

> Pamela

>

January 5, 2007

>

> Pamela,

>

> I think I can speak for and Doug that we would like for you to

> stay. It would be good to have a member for whom Xolair didn't work

> who can speak to what other things her doc and she are trying and

> why. It sounds like you have some asthma triggers that are not

> allergic related, which would certainly not respond to Xolair. At

> any rate, take good care of yourself and keep us posted on how you

> are doing.

>

> Addy

> Group co-owner

>

Pamela,

I agree. We would love to have you stay

Doug

Group founder

Group co-owner

January 5, 2007

Hi

I did suggest a dosage increase, but she was against it

Maybe a respirologist will be more apt to push for the dosage

increase as this dr. was not comfortable treating someone with as

severe asthma as mine.

Thanks!

Pamela

-- In , McLaughlin

<gmclaughlin1000@...> wrote:

>

> Pamela,

>

> I just want to share my experience with you.....my IgE is only

44. I started on 150 every month for a year and didn't notice much

of an improvement. I told my doc I'd like to stop taking it and see

what happens. When I did I became very sick. I went back on it 2

weeks later and the sickness went away. Unfortunately, on that dose,

Xolair was only working about 50% of the time. My doc's office

called Genentech and they suggested I increase the dose to 150 and 75

alternating every two weeks. That dose has literally been the silver

bullet. I've had some episodes since being on that dose but they

tend to occur when I have an infection and/or when I'm at the end of

the dose, like yesterday. Perhaps you need a dose adjustment rather

than stopping it. If the drug is actually working you should get

sicker once you stop completely.

>

> Best of luck!

>

> pjboucher2001 <pjboucher2001@...> wrote:

> I went to see my allergist/immunologist today. She is the

> prescribing physician for my Xolair. She is advising my insurance

> company that I will no longer be requiring Xolair. Apparently my

IGE

> is 59 (I thought it was 91 and I was close to the next dosage

level),

> and there has been no improvement in 1 year on Xolair. If anything,

> I have been on prednisone more in the last year than in previous

> years. My asthma tends to flare when I get colds/infections (which

> is always!!), vs a reaction to a particular allergen.

>

> I am on numerous others meds and she has told me that she is not

> comfortable treating someone with as severe asthma as mine. I am

> currently on 10mg of the evil candy and she wanted me to go on a

> higher dose, but I told her I was quite happy where I was! She

> didn't push it, but I do go see my family dr. tomorrow.....the pred

> doesn't really seem to be helping me much, so why put up with all

the

> side effects.

>

> The good thing out of this is that she is going to refer me to a

> respirologist, but the wait list in Kingston, Ontario could be

quite

> long as I believe there are only 2 of them. She also brought up

> whether I might have something else, like bronchiectasis (which

> someone just mentioned in a previous post!).

>

> I hope that you will all let me remain a member on this board...I

> have met some great people here and would still like to be in the

> loop......you never know....I might get Xolair approval again

> sometime soon!!!

>

> Thanks so much!

>

> Pamela

>

> __________________________________________________

>

January 5, 2007

Hi Jane

Yes, I do have a clean room with air filter...also have a dog, but

did not react to skin testing to any dogs...just reaction to cats!

The allergist/immunologist brought up bronchiactesis today, which is

why she is referring me to a respirologist (my former respirologist

retired a few years ago, and they are hard to come by in Canada

sometimes!).

I have never had a CT scan done before on my lungs...will keep

everyone updated.

Pamela

> I went to see my allergist/immunologist today. She is the

> prescribing physician for my Xolair. She is advising my insurance

> company that I will no longer be requiring Xolair. Apparently my

IGE

> is 59 (I thought it was 91 and I was close to the next dosage

level),

> and there has been no improvement in 1 year on Xolair. If anything,

> I have been on prednisone more in the last year than in previous

> years. My asthma tends to flare when I get colds/infections (which

> is always!!), vs a reaction to a particular allergen.

>

> I am on numerous others meds and she has told me that she is not

> comfortable treating someone with as severe asthma as mine. I am

> currently on 10mg of the evil candy and she wanted me to go on a

> higher dose, but I told her I was quite happy where I was! She

> didn't push it, but I do go see my family dr. tomorrow.....the pred

> doesn't really seem to be helping me much, so why put up with all

the

> side effects.

>

> The good thing out of this is that she is going to refer me to a

> respirologist, but the wait list in Kingston, Ontario could be

quite

> long as I believe there are only 2 of them. She also brought up

> whether I might have something else, like bronchiectasis (which

> someone just mentioned in a previous post!).

>

> I hope that you will all let me remain a member on this board...I

> have met some great people here and would still like to be in the

> loop......you never know....I might get Xolair approval again

> sometime soon!!!

>

> Thanks so much!

>

> Pamela

>

> __________________________________________________

>

January 5, 2007

Doug and Addy

Thank you so much for your concern and for letting me stay with this

group. I am sure that will be willing to let me stay as

well! (I have sent her a private e-mail whining..... I mean

discussing my day today!).

I have learnt so much from you wonderful people and I am so happy

that Doug founded this group.....it was the determining factor in

deciding to go ahead with starting Xolair in the first place!

I will keep 's situation in mind when I go to the

respirologist...maybe they will be willing to push me up to the next

dosage level....don't know how happy my insurance company will be to

accept that or not!

I am going to keep in touch with the nurse at the Xolair clinic here

in Kingston (there are only 2 patients there!), and if the Specialty

Care Pharmacy in Toronto continues to send the Xolair, I will

continue to go in for it.....maybe there will be a slip-up for the

first couple of months before Great West Life gets my disconintuation

notice

Thank you once again everyone for your concern and acceptance!

Pamela

January 5, 2007

Addy--would those be irritant related and possibly igg medicated food allergies,

etc. Do you know if any company is working on an a med to block igg triggered

reactions? Thanks, Jane

uca79iii <uca79iii@...> wrote:

>

> Pamela,

>

> I think I can speak for and Doug that we would like for you to

> stay. It would be good to have a member for whom Xolair didn't work

> who can speak to what other things her doc and she are trying and

> why. It sounds like you have some asthma triggers that are not

> allergic related, which would certainly not respond to Xolair. At

> any rate, take good care of yourself and keep us posted on how you

> are doing.

>

> Addy

> Group co-owner

>

Pamela,

I agree. We would love to have you stay

Doug

Group founder

Group co-owner

__________________________________________________

January 5, 2007

My doctor was against increasing the dose as well but the recommendation came

directly from Genentech so he went along with it. They said I could go as high

as 150/150 every two weeks but I don't want to do that. Honestly, I don't think

it is the higher dose that is helping me -- I believe it is the frequency. I

feel just as well after the 75mg shot as I do after the 150 shot. Eventually I

want to get down to 75/75 every two weeks rather than 150/75 every two weeks.

Unfortunately, the shot doesn't come in 75mg doses so the cost will be the same.

pjboucher2001 <pjboucher2001@...> wrote: Hi