Re: Fearful about starting Xolair

[Guest guest]

What are your IgE levels?

>

> Hi all,

>

> New member here. Severe asthma and I have been on prednisone (60 mg)

> for 15+ years, also on multiple time daily doses of advair, singulair,

> theophylline, and xopenex. Have an at-home nebulizer and all the other

> fun stuff.

>

> Asthma has been out of control of late and I've had multiple trips to

> the ER. My doctor has suggested Xolair but I've read about lots of

> potential health hazards. However, I've also read plenty of success

> stories that lead me to believe it is something I should try.

>

> Please let me know what advice you can provide to a sufferer who is

> fearful of trying this for the first time but is running out of options.

>

> Thanks in advance to all.

>

[Guest guest]

Welcome to the group!

The most important thing to understand is that each of us has to do

our own risk/benefit analysis when starting ANY medication. I was in

the same boat you're in now when I started Xolair in October, 2003.

What I told my husband was that I didn't care what problems Xolair

might create for me later, I had to try it. My quality of life was

0. I needed a miracle.

I got it. Instead of having nearly a dozen serious episodes a year,

I now have 2-3, none of them requiring hospitalization. Xolair has

dramatically improved my quality of life.

Two important things to understand: our bodies continue to make IgE,

so it can take months, up to a year of taking it to see benefit from

Xolair. Second, because our bodies continue to make IgE, taking

Xolair in nearly all patients does not mean that they will never have

an asthmatic or allergic episode again - unbound IgE can always bind

to the mast cell and cause a reaction before Xolair ever gets to it.

I encourage you to read through the past posts. Please feel free to

post any specific questions you have as well.

Addy

Group Co-owner

--- In , " weshare928 " <weshare928@...>

wrote:

>

> Hi all,

>

> New member here. Severe asthma and I have been on prednisone (60

mg)

> for 15+ years, also on multiple time daily doses of advair,

singulair,

> theophylline, and xopenex. Have an at-home nebulizer and all the

other

> fun stuff.

>

> Asthma has been out of control of late and I've had multiple trips

to

> the ER. My doctor has suggested Xolair but I've read about lots of

> potential health hazards. However, I've also read plenty of

success

> stories that lead me to believe it is something I should try.

>

> Please let me know what advice you can provide to a sufferer who is

> fearful of trying this for the first time but is running out of

options.

>

> Thanks in advance to all.

>

[Guest guest]

I agree with Addy. Prior to starting Xolair I could not walk from the

living room to the kitchen without resting. When my Dr mentioned

Xolair, I did not hesitate, no research, just said yes please! After

we started the process and I was in the middle of an Insurance fight

(my IgE levels were 1190, over the high limit) I researched Xolair. I

was pleasantly surprised, I'm very suspicious of Drs.. and

medications. It seems, in my opinion, that the percentage of real

adverse reactions for Xolair is far lower then most medications I am

taking, have taken, and far below what the medical community calls an

acceptable risk vs. benefit. Will something jump up in the future that

I may have to deal with, perhaps, but in the mean time I have no

regrets for the decision I have made to take Xolair. Should something

negative pop up in the future I do not believe it would be My Dr.'s

fault, I believe he has my best interests at heart and I do not

believe Xolair is out to trick people so they can make a dime, Risk

vs. Benifit. I made an informed decision factoring in any future

possibilities. Am I " healed " and back to " normal " , no, but this is

not the fault of Xolair, my Dr, my other medications, it is just the

way it is. My Quality of life has vastly improved and quality of life

issues to me are somewhat important (mine too was " 0 " Addy).

Everything is relative and perhaps others would not be happy with my

" improvement " and quality of life, but I am no longer restricted to

going from the kitchen to the living room, I cleaned the ice out of a

small freezer today, start to finish, this is a good thing!

I apologize for the lengthy reply but today I cleaned a freezer,

realized I have not woken up in the middle of the night for my rescue

inhaler in over a month, and have not been hospitalized for 2 1/2 years.

I have been on Xolair for approximately 3 years and every day I wake

up is a good day.

Ron

..

On May 18, 2008, at 6:56 AM, pyle456 wrote:

> Welcome to the group!

>

> The most important thing to understand is that each of us has to do

> our own risk/benefit analysis when starting ANY medication. I was in

> the same boat you're in now when I started Xolair in October, 2003.

> What I told my husband was that I didn't care what problems Xolair

> might create for me later, I had to try it. My quality of life was

> 0. I needed a miracle.

>

> I got it. Instead of having nearly a dozen serious episodes a year,

> I now have 2-3, none of them requiring hospitalization. Xolair has

> dramatically improved my quality of life.

>

> Two important things to understand: our bodies continue to make IgE,

> so it can take months, up to a year of taking it to see benefit from

> Xolair. Second, because our bodies continue to make IgE, taking

> Xolair in nearly all patients does not mean that they will never have

> an asthmatic or allergic episode again - unbound IgE can always bind

> to the mast cell and cause a reaction before Xolair ever gets to it.

>

> I encourage you to read through the past posts. Please feel free to

> post any specific questions you have as well.

>

> Addy

> Group Co-owner

>

>

> >

> > Hi all,

> >

> > New member here. Severe asthma and I have been on prednisone (60

> mg)

> > for 15+ years, also on multiple time daily doses of advair,

> singulair,

> > theophylline, and xopenex. Have an at-home nebulizer and all the

> other

> > fun stuff.

> >

> > Asthma has been out of control of late and I've had multiple trips

> to

> > the ER. My doctor has suggested Xolair but I've read about lots of

> > potential health hazards. However, I've also read plenty of

> success

> > stories that lead me to believe it is something I should try.

> >

> > Please let me know what advice you can provide to a sufferer who is

> > fearful of trying this for the first time but is running out of

> options.

> >

> > Thanks in advance to all.

> >

>

>

>

[Guest guest]

High Five, Ron!!!

Addy

> > >

> > > Hi all,

> > >

> > > New member here. Severe asthma and I have been on prednisone (60

> > mg)

> > > for 15+ years, also on multiple time daily doses of advair,

> > singulair,

> > > theophylline, and xopenex. Have an at-home nebulizer and all the

> > other

> > > fun stuff.

> > >

> > > Asthma has been out of control of late and I've had multiple

trips

> > to

> > > the ER. My doctor has suggested Xolair but I've read about lots

of

> > > potential health hazards. However, I've also read plenty of

> > success

> > > stories that lead me to believe it is something I should try.

> > >

> > > Please let me know what advice you can provide to a sufferer

who is

> > > fearful of trying this for the first time but is running out of

> > options.

> > >

> > > Thanks in advance to all.

> > >

> >

> >

> >

>

>

>

>

[Guest guest]

Welcome to the group. You have found the right place for support. We

all have gone through your fears too.

I have been on xolair since September 2003 and it has given me my life

and breath back.

Due to all my years on Prednisone I gained 50 extra pounds, became

type II Diabetic, had to have cataract surgery in both eyes. My

disks in my neck became ruptured and I had to undergo 2 fusion

surgeries (one with a metal plate) just to keep my cervical spine in

place. C-4 through 7 are now fused and plated.

Prednisone also made my mental state horrible. I was grouchy,

irritable and sometimes just downright mean. Talk about side

effects!!!! UGH! My poor wife! I was sick of being sick and especially

SICK OF THE MEDICINE!!

Needless to say, when my doctor recommended xolair, I immediately

jumped at the chance. Even though the FDA had just approved it and I

was the first person in the state of Arkansas to get it, I didn't care

about any risk. All I knew is that I had to have some relief,

especially from the evil candy. In my case the Prednisone was worse

than the asthma itself.

As soon as my doctor recommended xolair, I immediately went home and

looked it up on the internet. Sadly, there was not much and NO support

group. Thus, I started this group in September 2003.

Two weeks later, I got my first shots. Ever since then, every two

weeks I get two shots.....one in each arm. It took me a little over a

year to see any relief. I tried to quit at 6 months but my doctor

encouraged me to stay the course and I am glad I did.

NEVER have I had ANY reaction or side effects of ANY kind. Regular

allergy shots hurt and swell up on me but NEVER any problems with the

Xolair shots.

Today, almost 5 years later, I can honestly say that Xolair has been

the best thing to ever happen to my health. Since then,I have only had

to take Prednisione a few times and then it was just for a day or so.

In this group we have members who have reported almost immediate

results while most of us (like me) take up to a year and more to see

any relief. I almost quit after 6 months but my doctor encouraged me

to stay the course. I am so glad I did.

Only you can make this decision with the help of your doctor. Let us

know what you decide one way or another.

You are among friends here! Once again, WELCOME!

Doug

Group founder

[Guest guest]

Hi!

I too had to wait 1.5 years until I really saw a noticeable difference but it

was worth the wait. It will not necessarily cure you or rid you of your

long-standing prednisone habit but it should definitely improve things. Even a

little less pred makes it worth it!

----- Original Message ----

From: uca79iii <uca79iii@...>

Sent: Sunday, May 18, 2008 9:30:25 PM

Subject: [ ] Re: Fearful about starting Xolair

Welcome to the group. You have found the right place for support. We

all have gone through your fears too.

I have been on xolair since September 2003 and it has given me my life

and breath back.

Due to all my years on Prednisone I gained 50 extra pounds, became

type II Diabetic, had to have cataract surgery in both eyes. My

disks in my neck became ruptured and I had to undergo 2 fusion

surgeries (one with a metal plate) just to keep my cervical spine in

place. C-4 through 7 are now fused and plated.

Prednisone also made my mental state horrible. I was grouchy,

irritable and sometimes just downright mean. Talk about side

effects!!!! UGH! My poor wife! I was sick of being sick and especially

SICK OF THE MEDICINE!!

Needless to say, when my doctor recommended xolair, I immediately

jumped at the chance. Even though the FDA had just approved it and I

was the first person in the state of Arkansas to get it, I didn't care

about any risk. All I knew is that I had to have some relief,

especially from the evil candy. In my case the Prednisone was worse

than the asthma itself.

As soon as my doctor recommended xolair, I immediately went home and

looked it up on the internet. Sadly, there was not much and NO support

group. Thus, I started this group in September 2003.

Two weeks later, I got my first shots. Ever since then, every two

weeks I get two shots.....one in each arm. It took me a little over a

year to see any relief. I tried to quit at 6 months but my doctor

encouraged me to stay the course and I am glad I did.

NEVER have I had ANY reaction or side effects of ANY kind. Regular

allergy shots hurt and swell up on me but NEVER any problems with the

Xolair shots.

Today, almost 5 years later, I can honestly say that Xolair has been

the best thing to ever happen to my health. Since then,I have only had

to take Prednisione a few times and then it was just for a day or so.

In this group we have members who have reported almost immediate

results while most of us (like me) take up to a year and more to see

any relief. I almost quit after 6 months but my doctor encouraged me

to stay the course. I am so glad I did.

Only you can make this decision with the help of your doctor. Let us

know what you decide one way or another.

You are among friends here! Once again, WELCOME!

Doug

Group founder

__________________________________________________________________

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[Guest guest]

I am one of the newest to join this group and have only been on Xolair since

early April.

For me, it has been nothing short of a miracle.

I spent the entire day outdoors last friday gardening with my mom, who lives in

Montana.

Before Xolair, being outside for 15 minutes without wheezing and having a

full-blown

allergy attack would have been impossible, since the pollen count was high that

day. But

because I'm on it, I was able to be outdoors, planting flowers, digging in the

garden

starting at dawn, and then visiting my grandparents' graves to lay flowers on

them at the

end of the day as the sun was starting to go down.

So, the question to ask yourself is: are the benefits worth the risks. It's

such a personal

decision, but I was at the point where I would have tried ANYTHING to feel

better and have

a shot at living what I would consider a " normal " life, because short of

prednisone,

nothing worked and I was out of options.

The way I look at it, I could get hit by bus tomorrow. If that happened, at

least I would

have enjoyed ONE day doing what I wanted to do with nothing to hold me back.

>

> Hi all,

>

> New member here. Severe asthma and I have been on prednisone (60 mg)

> for 15+ years, also on multiple time daily doses of advair, singulair,

> theophylline, and xopenex. Have an at-home nebulizer and all the other

> fun stuff.

>

> Asthma has been out of control of late and I've had multiple trips to

> the ER. My doctor has suggested Xolair but I've read about lots of

> potential health hazards. However, I've also read plenty of success

> stories that lead me to believe it is something I should try.

>

> Please let me know what advice you can provide to a sufferer who is

> fearful of trying this for the first time but is running out of options.

>

> Thanks in advance to all.

>

[Guest guest]

i'm not sure i can say anything truely different from what anyone

else has said. most of us have been at a similar starting point to

you. we were frustrated, feeling horrible all the time and drugged

out just to try to breath.

my dr had me try allergy shots. even at the smallest dilution, i had

a reaction. at that point, we looked to xolair. we jumped through

all the insurance hoops and started it two months later. no

reactions. about 6 months later, i began to see some mild benefits.

i only need prednisone 3-4 times a year, which is a huge

improvement. i can go take the dogs for a walk without checking my

pocket for my inhaler. i have a veggie garden. my quality of life is

so much better. i can do anything!

no one can say you won't have side effects. obviously, the risk is

there. but you have to remember, with any medication, theyy have to

inform you of ANYTHING that happened to the participants in the

clinical trials. if some one had their xolair dose and then went out

for a seafood dinner they could list their anaphalytic reaction as a

reaction to xolair, which might not true, but could be due to their

shrimp scampi. (FYI - xolair doesn't have an effect of food

allergies. if you're allegic to certain foods, you'll likely be

allergic to them even with xolair)

look through some back posts and see other peoples experiences.

best of luck to you

heather

--- In , " weshare928 " <weshare928@...>

wrote:

>

> Hi all,

>

> New member here. Severe asthma and I have been on prednisone (60

mg)

> for 15+ years, also on multiple time daily doses of advair,

singulair,

> theophylline, and xopenex. Have an at-home nebulizer and all the

other

> fun stuff.

>

> Asthma has been out of control of late and I've had multiple trips

to

> the ER. My doctor has suggested Xolair but I've read about lots

of

> potential health hazards. However, I've also read plenty of

success

> stories that lead me to believe it is something I should try.

>

> Please let me know what advice you can provide to a sufferer who

is

> fearful of trying this for the first time but is running out of

options.

>

> Thanks in advance to all.

>

[Guest guest]

Amen to that! Very well said! So glad you are doing so well and had

such a GREAT day outside with your mom.

Addy

Group Co-owner

Still looking both ways before crossing the street!

>

> I am one of the newest to join this group and have only been on

Xolair since early April.

> For me, it has been nothing short of a miracle.

>

> I spent the entire day outdoors last friday gardening with my mom,

who lives in Montana.

> Before Xolair, being outside for 15 minutes without wheezing and

having a full-blown

> allergy attack would have been impossible, since the pollen count

was high that day. But

> because I'm on it, I was able to be outdoors, planting flowers,

digging in the garden

> starting at dawn, and then visiting my grandparents' graves to lay

flowers on them at the

> end of the day as the sun was starting to go down.

>

> So, the question to ask yourself is: are the benefits worth the

risks. It's such a personal

> decision, but I was at the point where I would have tried ANYTHING

to feel better and have

> a shot at living what I would consider a " normal " life, because

short of prednisone,

> nothing worked and I was out of options.

>

> The way I look at it, I could get hit by bus tomorrow. If that

happened, at least I would

> have enjoyed ONE day doing what I wanted to do with nothing to hold

me back.

>

>

>

> --- In , " weshare928 " <weshare928@>

wrote:

> >

> > Hi all,

> >

> > New member here. Severe asthma and I have been on prednisone (60

mg)

> > for 15+ years, also on multiple time daily doses of advair,

singulair,

> > theophylline, and xopenex. Have an at-home nebulizer and all the

other

> > fun stuff.

> >

> > Asthma has been out of control of late and I've had multiple

trips to

> > the ER. My doctor has suggested Xolair but I've read about lots

of

> > potential health hazards. However, I've also read plenty of

success

> > stories that lead me to believe it is something I should try.

> >

> > Please let me know what advice you can provide to a sufferer who

is

> > fearful of trying this for the first time but is running out of

options.

> >

> > Thanks in advance to all.

> >

>

[Guest guest]

I was supposed to start xolair a few months ago but family illnesses

just kept interupting me from doing so...part of if I sure was fear

and I was using the other for an excuse..--- I have decided to go

forward with it. My doctor had to have me approved again because 90

days had passed and today I got the call that I was approved. So I

understand your fear. I will keep you in my thoughts that you make the

decision that is right for you. jean

In , " weshare928 " <weshare928@...> wrote:

>

> Hi all,

>

> New member here. Severe asthma and I have been on prednisone (60 mg)

> for 15+ years, also on multiple time daily doses of advair, singulair,

> theophylline, and xopenex. Have an at-home nebulizer and all the other

> fun stuff.

>

> Asthma has been out of control of late and I've had multiple trips to

> the ER. My doctor has suggested Xolair but I've read about lots of

> potential health hazards. However, I've also read plenty of success

> stories that lead me to believe it is something I should try.

>

> Please let me know what advice you can provide to a sufferer who is

> fearful of trying this for the first time but is running out of options.

>

> Thanks in advance to all.

>