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Instdsign, Ginger, et al

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It is not uncommon for even those of us who've gotten great benefit

from Xolair to have days where we wake up really congested. Current

information suggests that this happens when we are exposed to an

enormous amount of allergen that overwhelms our systems and when we

are at the end of a dose and just before the next dose when there is

a great amount of IgE in our systems that hasn't yet been bound to

Xolair. (Our bodies make new IgE all the time).

Last fall I was exposed to a huge quantity of mold and had a six-week

episode of allergies and asthma symptoms that was the worst I've had

ever. On the other hand, it is one episode in two years, rather than

one every 8-12 weeks. I attribute the fact that I know longer need

many courses of pred and antibiotics every year to Xolair. That does

not mean, however, that I will be episode free. It is NOT a cure.

Addy

Group co-owner

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

wrote:

>

> I know what you mean. I've had 5 months of Xolair treatments (10

> series of shots - 3 at a time) and haven't see quite the impovmnt I

> wold have liked. I can now sort throgh a huge pile of dirty laundry

and

> not get choked up which is good but was only one piece of the

disease.

> My pulmo has declared my pulmonary function as " normal " yet I can't

say

> that I feel all that great, unlike what other folks on the message

> board are declaring.

>

> At this point I would not consider paying much for it myself (ins.

> covers most) but I do continue on in the hopes that the big time

break

> through will occur. I've developed sensitivities to meds (not

Xolair)

> that weren't supposed to happen per the doc at the time. Many

years

> later I discovered I'm not the only one. So, bad stuff happens -

> sometimes help occurs too.

>

> Like you, I'm concerned about effects further down the line and

tend to

> believe that some will show up in some people. No idea who or what,

> though. On the other hand perhaps one of the side effects will be

help

> with some other disorders. I've been a " guinea pig " in research

> studies (NOT Xolair) and hope that Genentech is testing on differet

> types of people over the long haul. I'm looking forward to hearing

the

> results.

>

> And, despite what it might sound like, prednisone is not the only

> alternative to xolair. Suggesting that one stop taking it if

they're

> afraid of Xoair might be a little over simplistic.

>

> This morning I woke up w/sinus headache & congestion and irritation

in

> my lungs and was coughing and short of breath. That's weird, and

even

> more so this long on Xolair. I'm hoping that somehow they will

make

> progress in understanding why Xolair works when it does and why it

does

> not work when it doesn't. At least my pulmo believes me when I

tell

> her of my symptoms!

>

>

> --- In , " Carol Corley " <mybouvs@>

wrote:

> >

> > Where would we find out about long-term SE? Does anyone know how

> long the shots have been in use?

> > I've been on them for 1 yr with some improvement in sx, but I

would

> love to have more information on potential SE.

> > Thanks,

> > Carol

> >

> >

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