another new member, high IgE

[Guest guest]

Greetings all -

My friend Joyce recommended joining as I'm in the process of

deciding whether to go ahead with trying Xolair. Over the last few

years my allergies and asthma have been steadily worsening again,

and recently I've had to stop taking inhaled steroids because I'm

apparently developing an allergy to them. Very annoying as for more

than a decade and three different meds, there was no problem. Then

I took Advair, quit using my rescue inhaler almost entirely, and

wham! four months later I get an itchy rash that doesn't stop till

the Advair stops. And then the same thing happened a year later

after some time off then onto a combination of Pulmicort and

Foradil. Only a much worse rash. And since then, each inhaled

steroid I've tried has caused itching and rash.

Some background: I just turned 39 for the first time and have been

an asthmatic since just before my 5th birthday. I've had eczema and

allergies even longer, pretty much since I crawled out of the womb.

Both the asthma and the eczema were severe until I hit puberty, when

everything quieted down until my early 20s. I'm currently taking

Accolate, Zyrtec-D, Ventolin HFA, Combivent, Spiriva ... let's see,

I'm on a taper pack of pred thanks to a bad flare up and case of

stupidity (in reverse order) over the weekend, and just today

started Tilade. I'm probably missing something there because we've

been doing so much changing in and out over the last month and a

half I'm having trouble remembering what's what. Control is not

good - yesterday I felt pretty good after the first full day on the

prednisone, but today I'm back to breathless walking across the

room. The Tilade seems to be helping a bit tonight. My new

allergist wants me back on the inhaled steroids, but I'm thinking

it's only going to happen if he agrees to have the itching and rash

for me. At least till the current rash heals, he's agreed I

shouldn't try.

I've been interested to see a few members with higher than

recommended IgE levels are using Xolair. The new doc thought I was

exaggerating my history until my IgE level came back at 1280. No,

not a typo. Starts with a 12, ends with an 80. I've always been an

overachiever <g>. New doc says he thinks I'll still be approved as

he has a couple of other very high-IgE patients taking it and

responding well.

I'd be a lot more up for this if there weren't needles involved. I

don't do needles. Did allergy shots for a while in childhood but

stopped as they were making my reactions worse instead of better.

My mother was relieved as she was tired of coming up with with ways

to bribe me into the doctor's office. I was just plain relieved.

But something has to give here now, so I'm thinking seriously about

going for it. I'd have to be on the maximum dose every two weeks.

Anyone taking Xolair despite hating needles?

Is there any common experience for those with especially high IgE

levels in terms of length of time before a noticable improvement

starts? More time, less time, varies for everyone? And, on an only

semi-related note, am I the only asthmatic who's not getting nearly

as much benefit from the new albuterol sulfate/HFA formula as from

the plain old albuterol with the bad nasty CFC propellants?

Looking forward to learning more and hearing about everyone else's

experiences.

Cherie

[Guest guest]

hi cherie

welcome !!

your story sounds somewhat similar to mine. i was born jaundiced. as

soon as they got that settled, the eczema developed, along with

allergies. asthma started when i was three, but i wasn't diagnosed

until about 5 (always had attacks in the middle of the night -- my

pedi wasn't inclined to get out of bed for us). the only difference

in our stories is the hiatis yours took. mine never did. do you use

protopic/elidel for your eczema? the protopic is what really helps

me keep the skin under control. i use it once a week, even if my

skin is clear, as per my dermo. (just an aside)

my IgE was tested and was about 720. not quite as impressive as

yours - haha. i've been doing the xolair since january, and it took

the full six months to see improvement. i get 375mg every two weeks

(3 shots) and i still only see it lasting 10-12 days. the dr wants

wait til january (when i've been on a ful year, so maybe it will

last 14 days), and then see if any studies were done for higher

doses.

as for the needle issue, um, i've never had a problem with needles.

i started with three allergy shots a week when i was 7 and never

thought anything of it. i inject my own xolair now, under the

supervison of the RN at the drs office!

and your albuterol question -- do you use the generic or brand name?

the pharmacist claimed the new propellant in the generic made it

better than the old generic, and i did not find that to be true (nor

did my dr). i stick with ventolin HFA.

i hope you find something that works. hopefully the xolair will help

you out.

heather