Re: Contemplating Xolair

[Guest guest]

Lind and all,

I'm waiting for my insurance company to approve Xolair for me and am hopeful

that it will help. My allergic symptoms (not all of which are asthma) are

pretty debilitating, with a tendency toward frequent anaphylaxis.

So i don't yet have any personal experience with Xolair to go by. But Lind,

in answer to your inquiry, I want back to the Xolair website where it clearly

says (pasted below) that Xolair is for asthma patients whose symptoms are NOT

well controlled with inhaled steroids. It sounds, based on what you've said,

that you do pretty well on your current regimen. So, I understand your concern

about putting yourself at risk for side effects if your quality of life is okay

at this point.

Here's the quote from the Xolair site:

" Xolair is indicated for adults and adolescents (12 years of age and older)

with moderate to severe persistent asthma who have experienced a positive skin

test or in vitro reactivity to a perennial aeroallergen and whose symptoms are

inadequately controlled with ICS. "

It's good that you're doing some of your own investigating before making a

decision. I always consider what my doctors (and trusted friends) say but

ultimately I do what I think is best.

Best,

Meryl

Hello all. Glad to find this site.

I've had asthma since I was a senior in college '82.

I'm on Advair 500/50 + Singulair which controls quite well as far as

I'm concerned. My allergist is doing the hard sell with regard to

Xolair. I have multiple concerns about jumping to to treatment. My

Dr. did the blood draw on me and apparently I'm a candidate for the

injections. My allergist even went so far as submit the paperwork,

and I have been approved by my insurance carrier.

I do have multiple concerns. Cancer being the top one. How did you

all reconcile the fact that this drug increases (sure, it's slight)

risk of cancer? Secondly, did any of you have an anaphylactic

reaction after the initial injection? Thirdly, My doctor's treatment

plan is inject - wants me to wait in office 90 minutes for

observation for several of the first injections....which will

decrease as they see how I react. Is that normal? Seems to me that

anaphylaxis is more common than the literature states??

Fourthly, What I read here, many of you have multiple URI while on

Xolair...that's no fun. I hardly ever get them now, why would I want

to put myself into a situation where my immune system is compromised,

and has trouble doing it's other job...keeping me well?

Skeptical & not sold that Xolair is for me.

Lind

[Guest guest]

---Lind:

Everyone has to make their own mind up about drugs. My asthma

controls every aspect of my life so I felt the risk was minimal.

I have been on xolair for over a year and I have had no side

effects good or bad. Actually I have had no relief but it

can be a very, very slow working drug for some people.

Obviously, I wonder about the cancer and possible other immune

system problems, too. But so far I have not read or heard of

much problems with the drug (other than the cost

On this board the biggest side effect seems to be chest infections

and one person who just couldn't seem to tolerate the drug at all.

I can sympathize, I can no longer tolerate inhaled or oral steroids

(including your advair). Good luck.

Tony

[Guest guest]

Lind -

Just got off a 45 minute workout on the treadmill. Why does this

matter? Because a year ago I couldn't have done it. Xolair has

made a huge difference in my life, and freed me from the ball and

chain inhaler I have carried with me for the past 25 years.

Is Xolair for you? Sounds like maybe not, if you are well

controlled with your other meds. Of course, 'control' can be a

subjective term. What one person can tolerate may not be what

another feels is normal.

Anyone who has read my posts knows that I get quite edgy when the

cancer discussion comes up. In brief, if you look at the data and

compare it to the population as a whole, the incidence of cancer

among the Xolair users was the SAME as the general population, while

it was the placebo group that had an incindent rate of HALF of the

general population.

I have been lucky with no side-effects or increased URI. I'm also

lucky because I do the injections myself.

Some people get no benefit from Xolair, and others have had to quit

taking it.

One thing to consider - I have had asthma so bad for so long that my

lung function is only a fraction of what it should be, and will not

likely ever recover. I'm not letting this get me down, hence the

workout regimen. However, I wonder what I am looking forward to in

the future - oxygen, limited activity, etc. as I get older. Not

something I like to think about. This may be what is on your Dr.'s

mind.

Good luck with your decision. We're here to help any way we can.

Greg

--- In , " lindculp " <lindculp@y...>

wrote:

>

>

> Hello all. Glad to find this site.

>

> I've had asthma since I was a senior in college '82.

> I'm on Advair 500/50 + Singulair which controls quite well as far

as

> I'm concerned. My allergist is doing the hard sell with regard to

> Xolair. I have multiple concerns about jumping to to treatment. My

> Dr. did the blood draw on me and apparently I'm a candidate for

the

> injections. My allergist even went so far as submit the paperwork,

> and I have been approved by my insurance carrier.

> I do have multiple concerns. Cancer being the top one. How did you

> all reconcile the fact that this drug increases (sure, it's

slight)

> risk of cancer? Secondly, did any of you have an anaphylactic

> reaction after the initial injection? Thirdly, My doctor's

treatment

> plan is inject - wants me to wait in office 90 minutes for

> observation for several of the first injections....which will

> decrease as they see how I react. Is that normal? Seems to me that

> anaphylaxis is more common than the literature states??

> Fourthly, What I read here, many of you have multiple URI while on

> Xolair...that's no fun. I hardly ever get them now, why would I

want

> to put myself into a situation where my immune system is

compromised,

> and has trouble doing it's other job...keeping me well?

>

> Skeptical & not sold that Xolair is for me.

>

> Lind

[Guest guest]

Hi Lind,

Glad you found this site too, there is a lot of info here.

Your question about the cancer risk. My asthma is not controlled

and I would do ANYTHING for a chance to live normally and breathe

easier, even with a slightly increased risk for cancer, because the

way I'm living now is not living. I have only had 3 Xoliar shots so

far, and even though it may take 6 months or more to see improvement

for me it is worth it. Basically, I want my life back and if the

Xolair can do that it will be wonderful. I am on oral prednisone,

singulair, Adviar 500/50, Nasarel, and Albuterol by nebulizer every

4 hours, and with all that I have not been able to work since August

and cannot do many of the things most people can. Even if all the

Xolair does is get me off the prednisone it will be worth it.

I was concerned about anaphylaxis also as I have multiple food

allergies, some of which cause anaphylaxis. I have not had any

reaction to the shots at all, not even redness at the injection

site. My Dr had me wait at her office for 1 hour the first 2 times

and let me go after 15 minutes the last time.--

I felt some improvement after my second shot, that lasted about a

week. After the 3rd shot, I didn't, but I was coming down with a

URI. As everyone in my family was sick over the holiday and we were

all togather, I don't think this was caused by the Xolair lowering

my immune response. I think even a perfectly healthy person would

have got sick exposed to all that.

I'm not sure, but I don't think Xolair compromises your immune

system. Maybe somebody else has the answer to that one.

I don't blame you for questioning if Xoliar is for you, if your

symptoms are controlled and you can live a normal life. I don't

like to take any more medications than are necessary either.

Good luck to you

In , " lindculp " <lindculp@y...> wrote:

>

>

> Hello all. Glad to find this site.

>

> I've had asthma since I was a senior in college '82.

> I'm on Advair 500/50 + Singulair which controls quite well as far

as

> I'm concerned. My allergist is doing the hard sell with regard to

> Xolair. I have multiple concerns about jumping to to treatment. My

> Dr. did the blood draw on me and apparently I'm a candidate for

the

> injections. My allergist even went so far as submit the paperwork,

> and I have been approved by my insurance carrier.

> I do have multiple concerns. Cancer being the top one. How did you

> all reconcile the fact that this drug increases (sure, it's

slight)

> risk of cancer? Secondly, did any of you have an anaphylactic

> reaction after the initial injection? Thirdly, My doctor's

treatment

> plan is inject - wants me to wait in office 90 minutes for

> observation for several of the first injections....which will

> decrease as they see how I react. Is that normal? Seems to me that

> anaphylaxis is more common than the literature states??

> Fourthly, What I read here, many of you have multiple URI while on

> Xolair...that's no fun. I hardly ever get them now, why would I

want

> to put myself into a situation where my immune system is

compromised,

> and has trouble doing it's other job...keeping me well?

>

> Skeptical & not sold that Xolair is for me.

>

> Lind

[Guest guest]

Greg,

Way to go with the treadmill!! That is very encouraging for all of

us who just got started on Xoliar. I just got one last week and am

only able to do a few minutes at a time right now, but I think

exercise is important and am going to keep after it.

Also, I think it was who goes mountian biking since being on

Xoliar. Right now I can't even imagine being able to do that, but

it sure gives me something to hope for.

Lind,

I don't think I would have considered Xolair if my asthma was

controlled, but if it can raise my quality of life and get me off

the steroids with all their known side effects it will be well worth

it. But this needs to be a decision each person and their Dr makes.

If you are not comfortable with what your Dr thinks, maybe you

should check with another Dr. also.

-- In , " grw1177 " <grw1177@y...> wrote:

>

>

> Lind -

>

> Just got off a 45 minute workout on the treadmill. Why does this

> matter? Because a year ago I couldn't have done it. Xolair has

> made a huge difference in my life, and freed me from the ball and

> chain inhaler I have carried with me for the past 25 years.

>

> Is Xolair for you? Sounds like maybe not, if you are well

> controlled with your other meds. Of course, 'control' can be a

> subjective term. What one person can tolerate may not be what

> another feels is normal.

>

> Anyone who has read my posts knows that I get quite edgy when the

> cancer discussion comes up. In brief, if you look at the data and

> compare it to the population as a whole, the incidence of cancer

> among the Xolair users was the SAME as the general population,

while

> it was the placebo group that had an incindent rate of HALF of the

> general population.

>

> I have been lucky with no side-effects or increased URI. I'm also

> lucky because I do the injections myself.

>

> Some people get no benefit from Xolair, and others have had to

quit

> taking it.

>

> One thing to consider - I have had asthma so bad for so long that

my

> lung function is only a fraction of what it should be, and will

not

> likely ever recover. I'm not letting this get me down, hence the

> workout regimen. However, I wonder what I am looking forward to

in

> the future - oxygen, limited activity, etc. as I get older. Not

> something I like to think about. This may be what is on your

Dr.'s

> mind.

>

> Good luck with your decision. We're here to help any way we can.

>

> Greg

>

>

> >

> >

> > Hello all. Glad to find this site.

> >

> > I've had asthma since I was a senior in college '82.

> > I'm on Advair 500/50 + Singulair which controls quite well as

far

> as

> > I'm concerned. My allergist is doing the hard sell with regard

to

> > Xolair. I have multiple concerns about jumping to to treatment.

My

> > Dr. did the blood draw on me and apparently I'm a candidate for

> the

> > injections. My allergist even went so far as submit the

paperwork,

> > and I have been approved by my insurance carrier.

> > I do have multiple concerns. Cancer being the top one. How did

you

> > all reconcile the fact that this drug increases (sure, it's

> slight)

> > risk of cancer? Secondly, did any of you have an anaphylactic

> > reaction after the initial injection? Thirdly, My doctor's

> treatment

> > plan is inject - wants me to wait in office 90 minutes for

> > observation for several of the first injections....which will

> > decrease as they see how I react. Is that normal? Seems to me

that

> > anaphylaxis is more common than the literature states??

> > Fourthly, What I read here, many of you have multiple URI while

on

> > Xolair...that's no fun. I hardly ever get them now, why would I

> want

> > to put myself into a situation where my immune system is

> compromised,

> > and has trouble doing it's other job...keeping me well?

> >

> > Skeptical & not sold that Xolair is for me.

> >

> > Lind

[Guest guest]

Hi, and welcome:

I have been on Xolair for 14 months. I have had poorly controlled

allergies and asthma for 33 years. Prior to starting Xolair my

asthma was poorly controlled and I was on steroids almost all the

time.

As to the increased cancer risk - I believe Greg posted a well-worded

reply several months ago. The increased cancer risk reported was not

statistically significant and there was no way to prove that Xolair

was a factor in the cancer of any of the patients who reported

getting cancer - i.e., there was no medical evidence to prove that

the cancer did or did not appear prior to starting Xolair. I agree

with , however, that any risk/benefit analysis for me indicates

that Xolair is a win-win situation despite it being such a new

medication.

That being said, if my asthma were well controlled using Advair and

Singulair, I would not opt for Xolair, primarily because of the cost,

but also why take a medicine if you don't need it.

I have not had any URIs since starting Xolair. In fact, my

respiratory disease is much improved and I have cut my need for

antibiotics by 2/3.

Addy