Re: Xolair effectiveness window

[Guest guest]

thanx for this, it makes it easier to " hang in there " & wait it out.  since my

husband is highly allergic, we really do hope he will see an improvement. 

maureen

________________________________

From: pyle456 <jamcculloch2@...>

Sent: Tuesday, July 21, 2009 6:07:45 AM

Subject: [ ] Xolair effectiveness window

 

Hi, everyone,

We've just had two folks post that they're frustrated that they haven't seen

improvement after 3 months on Xolair. In this group, we've found that generally

most folks see improvement in the 4-6 month window, but we've had many who've

taken much longer than that.

Xolair is not for what this group has previously termed " lightweights " people

with mild or moderate Type I hypersensitivities that can be controlled with

immunotherapy and other, more traditional medications. People who have multiple

causes for their asthma that include triggers that are not allergic in nature

may not see the same level of benefit as those of us who suffer primarily from

allergic asthma.

Addy

Group Co-owner

[Guest guest]

The other thing to remember is outdoor environmental allergies tend to be

worst from April - November with a major peak for grass and ragweed in many

areas right now in the US. So though Xolair is in the system there might be

an increase of IgE that needs to be negated.

B.

From: [mailto: ] On

Behalf Of pyle456

Sent: Tuesday, July 21, 2009 6:08 AM

Subject: [ ] Xolair effectiveness window

Hi, everyone,

We've just had two folks post that they're frustrated that they haven't seen

improvement after 3 months on Xolair. In this group, we've found that

generally most folks see improvement in the 4-6 month window, but we've had

many who've taken much longer than that.

Xolair is not for what this group has previously termed " lightweights "

people with mild or moderate Type I hypersensitivities that can be

controlled with immunotherapy and other, more traditional medications.

People who have multiple causes for their asthma that include triggers that

are not allergic in nature may not see the same level of benefit as those of

us who suffer primarily from allergic asthma.

Addy

Group Co-owner

[Guest guest]

Addy,

I know that challenging a group co-owner is a sure-fire way of getting myself

into trouble (and I'm not the sort to pick a fight), but I feel the need to say

this...

I think you will find that us " lightweights " have equally valid reasons to

warrant being on a drug such as Xolair as those with chronic asthma.

Immunotherapy and other medications sometimes just aren't effective for

conditions such as chronic urticaria, idiopathic anaphylaxis, atopic dermatitis

etc. These conditions can in some cases be just as debilitating (and indeed,

just as dangerous) as chronic asthma.

Asthma is the indication Genentech chose to pursue on commercial grounds, it

doesn't mean that the drug isn't likely to be effective for other conditions

involving IgE, mast cells etc - indeed, there are publications out there

detailing the successful use of Xolair for a number of other illnesses, and

Genentech are currently pursuing licensing for some of those other indications.

This group will need to accept that and surely cease to be " -

Asthmatics on Xolair " at some point.

I would therefore challenge your assertion that Xolair " isn't for " some of us -

surely that is for our physicians (some of whom are world experts in their

respective fields) to determine?

>

> Hi, everyone,

>

> We've just had two folks post that they're frustrated that they haven't seen

improvement after 3 months on Xolair. In this group, we've found that generally

most folks see improvement in the 4-6 month window, but we've had many who've

taken much longer than that.

>

>

> Xolair is not for what this group has previously termed " lightweights " people

with mild or moderate Type I hypersensitivities that can be controlled with

immunotherapy and other, more traditional medications. People who have multiple

causes for their asthma that include triggers that are not allergic in nature

may not see the same level of benefit as those of us who suffer primarily from

allergic asthma.

>

>

> Addy

> Group Co-owner

>

[Guest guest]

Hello ,

I think you're defining " lightweights " as the same thing as people with

non-IgE mediated conditions such as chronic urticaria, idiopathic anaphylaxis,

atopic dermatitis etc., they're not. A lightweight is someone who has to take a

Benadryl once in a while or even a Claritin once a day and is convinced they

know what we go through.

I think Addy was just saying (please correct me Addy if I'm wrong) that

people with non-IgE mediated conditions, while certainly debilitating, Xolair

may not help them as much as those of us with IgE mediated conditions.

Therefore, those people who suffer from non-IgE mediated conditions, it might be

prudent given the study findings that were released last week, that they discuss

with their allergist or pulmonologist the risks/benefits of continuing with

Xolair if they are not showing any improvement on it. She was not trying to

imply (again, correct me Addy if I'm wrong) that people with non-IgE mediated

conditions are not worthy of a drug like Xolair.

Certainly anyone who's MD thinks Xolair might be worth trying is 'worthy'

of Xolair treatments, sorry if you felt otherwise. Who knows - we might learn

that Xolair can be used to treat some disease that's not even related to asthma,

that would be great!

Meagan

Addy - I apologize if I over-stepped here, I just wanted to provide

clarification to , and I didn't want people to think you meant your post

how interpreted it. I am so sorry if I crossed the line.

> >

> > Hi, everyone,

> >

> > We've just had two folks post that they're frustrated that they haven't seen

improvement after 3 months on Xolair. In this group, we've found that generally

most folks see improvement in the 4-6 month window, but we've had many who've

taken much longer than that.

> >

> >

> > Xolair is not for what this group has previously termed " lightweights "

people with mild or moderate Type I hypersensitivities that can be controlled

with immunotherapy and other, more traditional medications. People who have

multiple causes for their asthma that include triggers that are not allergic in

nature may not see the same level of benefit as those of us who suffer primarily

from allergic asthma.

> >

> >

> > Addy

> > Group Co-owner

> >

>

[Guest guest]

Yes, thank you, Meagan.

I think and I have straightened out our misunderstanding off line by

email.

Suffice it to say, each of needs to discuss the FDA announcement with our

doctors. Xolair is an expensive therapy, so folks whose allergies are

reasonably well controlled - be they skin conditions or asthma or what - with

immunotherapy, inhalers, etc. - probably don't need to be on xolair. But, as

says, that's a discussion they need to have with their doctor.

For myself, I'm hoping we can get off the " new FDA announcement " topic, until

they make a further announcement OR until one of us sees our doctor and comes

back with more information.

Addy

Group co-owner

> > >

> > > Hi, everyone,

> > >

> > > We've just had two folks post that they're frustrated that they haven't

seen improvement after 3 months on Xolair. In this group, we've found that

generally most folks see improvement in the 4-6 month window, but we've had many

who've taken much longer than that.

> > >

> > >

> > > Xolair is not for what this group has previously termed " lightweights "

people with mild or moderate Type I hypersensitivities that can be controlled

with immunotherapy and other, more traditional medications. People who have

multiple causes for their asthma that include triggers that are not allergic in

nature may not see the same level of benefit as those of us who suffer primarily

from allergic asthma.

> > >

> > >

> > > Addy

> > > Group Co-owner

> > >

> >

>