Re: Xolair Stats - Wonder if I'm having side effects

[Guest guest]

>

>

> Since I'm not showing any improvement at all after 2+ months on Xolair

> and, in fact, seem to be feeling worse in some ways (worse body aches,

> numbness and tingling in extremities, sinusitis, colds, weight gain) I

> looked up some statistics on Xolair. I found this from the Canada

> Respiratory Journal in 2006:

>

> ... in the evaluation by Bousquet et al ... , 38% of patients had a

> response by 4 weeks and 64% by 16 weeks. Fewer than two-thirds of

> patients who responded at 16 weeks had responded at four weeks; 87% had

> shown a response by 12 weeks.

>

> I do know that IgE can be accurately measured while on Xolair - that was

> in an April 2007 journal of clinical allergy and immunology. Obviously

> some people need more based on their IgE and probably other factors and

> some need less. I'm really concerned about what this is doing to me.

> It is completely unacceptable to expect anyone to blindly accept a drug

> not working for many months. I certainly would not take an aspirin for

> a headache now and be willing to wait six months for it to work. If it

> doesn't work, there's something wrong and it needs to be investigated.

> That isn't happening with Xolair. I am no little bit annoyed about it.

> Genentech only puts out the party line - they're not answering some

> serious questions.

Remember, it takes some of us up to a year or longer to see ANY

results. If you feel this strongly, rememember, you have every right

to refuse xolair treatment.

Doug

[Guest guest]

I honestly don't think you have given it enough time

to actually start showing results. all of the people

from Gememtec I know of have said that the normal

notice of results is 4 months. You have a few

statistics there but exactly what dosage are you

talking about? Those may be higher doses. Not ever

one gets 300 mg once per month.

Having said that...if you don't have the patience to

wait it out and see if it actually works. maybe you

should speak with your doctor about discontinuing it.

>

> Since I'm not showing any improvement at all after

> 2+ months on Xolair

> and, in fact, seem to be feeling worse in some ways

> (worse body aches,

> numbness and tingling in extremities, sinusitis,

> colds, weight gain) I

> looked up some statistics on Xolair. I found this

> from the Canada

> Respiratory Journal in 2006:

>

> ... in the evaluation by Bousquet et al ... , 38% of

> patients had a

> response by 4 weeks and 64% by 16 weeks. Fewer than

> two-thirds of

> patients who responded at 16 weeks had responded at

> four weeks; 87% had

> shown a response by 12 weeks.

>

> I do know that IgE can be accurately measured while

> on Xolair - that was

> in an April 2007 journal of clinical allergy and

> immunology. Obviously

> some people need more based on their IgE and

> probably other factors and

> some need less. I'm really concerned about what

> this is doing to me.

> It is completely unacceptable to expect anyone to

> blindly accept a drug

> not working for many months. I certainly would not

> take an aspirin for

> a headache now and be willing to wait six months for

> it to work. If it

> doesn't work, there's something wrong and it needs

> to be investigated.

> That isn't happening with Xolair. I am no little

> bit annoyed about it.

> Genentech only puts out the party line - they're not

> answering some

> serious questions.

>

>

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

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[Guest guest]

I take exception to the phrase " blindly accepting a drug not working

for months. " All of us have made the decision to take Xolair after

conversations with our doctors, families and doing our own research

and, most importantly, our own risk-benefit analysis. Further, there

are any number of drugs on the market that take weeks to months for

users to see full effect (SSRIs for one example). And there are many

drugs that have many more side effects that require patients to play

musical chairs with before they find the right one (blood pressure

medicine, for example).

I know that Doug, , and I (and many others on this

board) have been so sick and suffered so terribly in our quality of

life that we thought it well worth the wait to stay on a medicine

that had a response time as variable as Xolair's. For us it has paid

off in any number of ways. I'm not the only one who is grateful for

the success I've had on Xolair - my husband, my parents, my friends

are all grateful to have " the old Addy " back.

How many people were in the sampling of the studies you read? What I

read in the study you have reported here, most patients responded

within three months but there are some that didn't. Did it say what

percentage of those responded later? Or did they just give up.

Xolair reports an average response time of four months, but it does

take some people longer. Doug is a perfect example of this - it took

him a year and it has changed his life, dramatically decreasing the

toll that the years he's spent on prednisone has taken on his life.

You say that they can test for IgE while on Xolair. Does your

doctor have the ability to do this? Because the old IgE tests cannot

tell the difference. Does he have the newer test than can tell

this? My doctor is still unable to do this. Yes, he can test for

IgE while I " m on Xolair but the test he has doesn't distinguish

Xolair-bound from free floating IgE. If your doc doesn't have it

either, the manufacturer is probably still waiting on a patent before

making it available for sale widely (and then it may be too expensive

in the first few years for most practices to buy it, who knows?)

If you don't want to stay on Xolair any longer, go right ahead. No

one here is expecting you to " blindly " accept anything.

Addy

Group co-owner

--- In , " instdesgn1 " <instdesgn1@...>

wrote:

>

>

> Since I'm not showing any improvement at all after 2+ months on

Xolair

> and, in fact, seem to be feeling worse in some ways (worse body

aches,

> numbness and tingling in extremities, sinusitis, colds, weight

gain) I

> looked up some statistics on Xolair. I found this from the Canada

> Respiratory Journal in 2006:

>

> ... in the evaluation by Bousquet et al ... , 38% of patients had a

> response by 4 weeks and 64% by 16 weeks. Fewer than two-thirds of

> patients who responded at 16 weeks had responded at four weeks; 87%

had

> shown a response by 12 weeks.

>

> I do know that IgE can be accurately measured while on Xolair -

that was

> in an April 2007 journal of clinical allergy and immunology.

Obviously

> some people need more based on their IgE and probably other factors

and

> some need less. I'm really concerned about what this is doing to

me.

> It is completely unacceptable to expect anyone to blindly accept a

drug

> not working for many months. I certainly would not take an aspirin

for

> a headache now and be willing to wait six months for it to work.

If it

> doesn't work, there's something wrong and it needs to be

investigated.

> That isn't happening with Xolair. I am no little bit annoyed about

it.

> Genentech only puts out the party line - they're not answering some

> serious questions.

>

>

>

>

>

>

[Guest guest]

Hi,

I was prescribed Xolair (375mg/2wks) in March '05 and began

receiving the shots just over 2 years ago. I (and most if not all of

the other Xolair patients out ther, on this board and elsewhere) had

tried literally every other med/avoidance measure out there. It was

either trying Xolair or being an inpatient in a hospital getting IV

steroids or methotrexate (which is apparently a type of chemotherpy

that 'kills' your immune system). My pulmonologist/allergist said it

was my choice, but it really wasn't a choice at all. Xolair allows me

to live a 'normal' life - yes I am still on a fairly low dose of oral

steroid every other day, am still doing neb treatments every 2 hours,

and have to be in AC with a special allergy filter but it is just

what I have to do to stay out of the hospital.

For example, I just got back from my primary's office after

receiving my Xolair, and she said to me 'how do you feel?' my answer

was 'good.' She said 'really? even with all the pollen?' I

said 'well, yeah, I have to be very aware of my environment and do

nebs all the time but that's how it is.' Last year during spring

allergy season I was in my pulmo/allergist's office on average once a

week and on the phone with him at least twice a week. I talked to

him/saw him probably more than his wife did. I had constant sinus

infections that caused a drip and made my lungs go haywire, I was a

miserable mess. I was on Xolair, but Xolair does not make your body

stop producing IgE it just 'deactivates' them once they're made, my

body was SO allergic I kept making more IgE's and this spring I

think/feel the Xolair in my body is actually ahead of my own IgE

production.

So for me, Xolair is not, by far a miracle drug, but no one said

that it was. It certainly is making this spring's pollen season

something I can deal with though. In fact, I haven't been to either

my primary or my pulmo/allergist for a problem since the beginning/

middle of March and I don't have another appointment to see my

pulmo/allergist until June because he knows that 'I've got it,' which

he says to me all the time, meaning that I can deal with things on my

own most of the time. I know, and don't hesitate to call either my

primary or pulmo/allergist if I feel something starting up and I need

help, but I haven't even needed to talk over the phone with my

pulmo/allergist since the beginning of April and even that was just

to relay info from another doctor. Even though it took me like 15

months or so to see results from Xolair, it's far better as far as

I'm concerned than sitting in a hospital bed - which I've done

numerous times and it is NOT fun.

Yes with Xolair you have to have patience, but the benefits for

me, and I would think anyone who has been on it for a while, far

outweigh the waiting part.

Meagan

> >

> >

> > Since I'm not showing any improvement at all after 2+ months on

> Xolair

> > and, in fact, seem to be feeling worse in some ways (worse body

> aches,

> > numbness and tingling in extremities, sinusitis, colds, weight

> gain) I

> > looked up some statistics on Xolair. I found this from the

Canada

> > Respiratory Journal in 2006:

> >

> > ... in the evaluation by Bousquet et al ... , 38% of patients had

a

> > response by 4 weeks and 64% by 16 weeks. Fewer than two-thirds of

> > patients who responded at 16 weeks had responded at four weeks;

87%

> had

> > shown a response by 12 weeks.

> >

> > I do know that IgE can be accurately measured while on Xolair -

> that was

> > in an April 2007 journal of clinical allergy and immunology.

> Obviously

> > some people need more based on their IgE and probably other

factors

> and

> > some need less. I'm really concerned about what this is doing to

> me.

> > It is completely unacceptable to expect anyone to blindly accept

a

> drug

> > not working for many months. I certainly would not take an

aspirin

> for

> > a headache now and be willing to wait six months for it to work.

> If it

> > doesn't work, there's something wrong and it needs to be

> investigated.

> > That isn't happening with Xolair. I am no little bit annoyed

about

> it.

> > Genentech only puts out the party line - they're not answering

some

> > serious questions.

> >

> >

> >

> >

> >

> >

[Guest guest]

Again, if it takes a year, there IS A REASON. But, that aspect of Xolair hasn't

been investigated. The " WHY " of it just hasn't been clearly explained. My doc

says give it six months. Again, I'm concerned because even if I quit now my

body will not give normal IgE readings for one year per Genentech. Also, other

pains are showing up and I'm concerned about what Xolair has already done.

As for the statistics - they're not mine. They are from professional

journals. What is actually distributed to practicing physicians usually has

quite a lag time between production and distribution. I've sent the article to

my MD but haven't heard back re testing IgE while actually on Xolair.

I'm well aware of the lag time in antidepressants - a close friend was put on

them for years but could feel the effect IMMEDIATELY every time he took them.

Turns out that's a classic symptom of bipolar disorder and the antidepressants

severely made the real disease worse.

I'm on 300 mgs. twice a month. I suspect I should be on 375 twice a month as

an earlier IgE (pre Xolair) was 409. I'm trying to get my doc to respond to

this issue. But, then, if Xolair IS causing undesirable side effects it's best

not to increase. It's really a shot in the dark.

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