Re: New here... considering Xolair..

[Guest guest]

WElcome. 136 is a high enough IgE score to qualify for Xolair, but

it is not a terribly high score. If you are still on prednisone, it

is possible that the prednisone masked some of your IgE causing a

slightly lower score than you would have had otherwise.

I haven't had to wait more than a month to get approval from

insurance, but I understand that can vary.

Good luck,

Addy

Group co-owner

--- In , " Misty Lynn " <mistylynnm@...>

wrote:

>

> Hi. My name is Misty, I'm 25. I was told to check this group out

from

> someone on WebMD. Anyways I've always had pretty mild to moderate

> Asthma growing up, but since February of this year I've had nothing

> but problems. I had Allergy testing and reacted pretty strongly to

18

> different things. Mostly Cat hair, dander, etc etc. I started

allergy

> shots in March but had an anaphylactic reaction and ended up on a

> ventilator in ICU on a few weeks ago (Nov 21), so theyre no longer

an

> option according to my PCP, Allergist and Pulmonologist. Anyways,

> I've also go " sinus disease " and diabetes. I've been on Prednisone

or

> Sodium Medrol constantly since March which is hurting my blood

sugars

> and the doctors are concerned about the damage the steroids are

doing

> to my heart and kidneys because of the blood sugars being soo out

of

> control, reguardless of what we use to try and control them, when

I'm

> on steroids it's just uncontrollable. I've had 4 hospitalizations

> since February for Asthma alone, not counting the two sinus

surgeries

> I've had to try and fix that.

> I'm trying to find out what normal IgE levels and all are. I got a

> paper in the mail saying I am a candidate for Xolair and that my

IgE

> was 136, but the stuff I find about IgE levels have like super high

> numbers a lot higher than that. Soo I'm just confused, unless I'm

> reading stuff wrong.

> All three doctors have mentioned Xolair, but this is the first time

> I've had an IgE run. Also how long did it take insurance to approve

> it and all? I'm just really concerned because financially we cannot

> afford to have a big out of pocket cost right now, because I lost

my

> job in July because I was unable to perform my duties because of

> constant Asthma attacks and what not. And Its been hard finding a

new

> job because of attacks as well as the fact I've literally had 2-3

> appointments a week for the past 2 months it seems.

> thanks for any replies, I'm just sooo flustered with all this

stuff.

> Misty

>

[Guest guest]

Hi Misty

My IGE is 91. I also tested positive for Cat/dust etc.... I have

been on Xolair 10 months at the lowest dose, being 1 vial (forget how

much is in it) once per month. I haven't noticed any drastic changes

yet, but what I have noticed is that when my asthma does flare, I do

not feel as SICK overall as I did 1 year ago. I still take Ventolin

qid, Symbicort 4 puffs tid, Atrovent qid (or Spiriva), Theophylline

300mg, Singular daily. I am currently just winding down from a flare

(started November 1) and am down to 20mg prednisone/day. Thanks to

the pred I am also on meds for high blood pressure.

Having said all this though, I am functioning at a much better level

overall with the Xolair on board than the last major flare I had last

year. Even when I am off the prednisone, I still take all the other

meds listed. I will be having an appointment with my pulmonolgoist

(she's been on maternity leave since May), and it will be interesting

to see what her opinion on the Xolair is....I forget how close I am

in IGE and weight to move up to the next dosage.

I am in Canada and my husband's insurance company covers the whole

cost of my meds. I don't even have to go out of pocket as the

Specialty Pharmacy ships it to the Xolair Clinic in Kingston (there

are only 2 of us at the clinc!!!!)

I hope that you can get Xolair, but I don't know how it works in the

States...I know a lot of people have to pay co-pays. I know how

lucky I am that I have no out-of-pocket.

This is a great board and it has allowed me to become friends with

!!!

Good luck!

Pamela

[Guest guest]

Thanks for the replies... I've been on prednisone for over three weeks

now and still at 30 MG. I drop to 20MG tomorrow. I'm also on

Singulair, Advair 500/50, Albuterol inhaler and minineb, Spiriva,

DuoNeb, Pulmacort and also Claritin. Every time my dose starts

tapering with the prednisone I end up flaring up again though I'm

starting to get wheezy and short of breathe a lot quicker again. I

just need some relief

[Guest guest]

Misty,

You sound like the perfect candidate for Xolair and your IgE level sounds as

though you'll respond well to the meds -- just a patient's perspective. My

doctor told me the higher a person's IgE the less likely Xolair will work as

well. He said he has some patients with IgE counts up around 1000 and they

haven't responded as well as I have. My IgE was 44. Anything above 30 is

considered high.

As far as the cost and insurance goes.....I was very lucky. My insurance

approved Xolair without batting an eye but I've heard they can drag their feet,

which is probably due to the cost. Once you apply you should get on the phone

and get names, ask for approval dates, ask questions, call them back, etc.....it

sounds to me like you should have little trouble getting approved.

Good luck!

Misty Lynn <mistylynnm@...> wrote:

Hi. My name is Misty, I'm 25. I was told to check this group out from

someone on WebMD. Anyways I've always had pretty mild to moderate

Asthma growing up, but since February of this year I've had nothing

but problems. I had Allergy testing and reacted pretty strongly to 18

different things. Mostly Cat hair, dander, etc etc. I started allergy

shots in March but had an anaphylactic reaction and ended up on a

ventilator in ICU on a few weeks ago (Nov 21), so theyre no longer an

option according to my PCP, Allergist and Pulmonologist. Anyways,

I've also go " sinus disease " and diabetes. I've been on Prednisone or

Sodium Medrol constantly since March which is hurting my blood sugars

and the doctors are concerned about the damage the steroids are doing

to my heart and kidneys because of the blood sugars being soo out of

control, reguardless of what we use to try and control them, when I'm

on steroids it's just uncontrollable. I've had 4 hospitalizations

since February for Asthma alone, not counting the two sinus surgeries

I've had to try and fix that.

I'm trying to find out what normal IgE levels and all are. I got a

paper in the mail saying I am a candidate for Xolair and that my IgE

was 136, but the stuff I find about IgE levels have like super high

numbers a lot higher than that. Soo I'm just confused, unless I'm

reading stuff wrong.

All three doctors have mentioned Xolair, but this is the first time

I've had an IgE run. Also how long did it take insurance to approve

it and all? I'm just really concerned because financially we cannot

afford to have a big out of pocket cost right now, because I lost my

job in July because I was unable to perform my duties because of

constant Asthma attacks and what not. And Its been hard finding a new

job because of attacks as well as the fact I've literally had 2-3

appointments a week for the past 2 months it seems.

thanks for any replies, I'm just sooo flustered with all this stuff.

Misty

---------------------------------

Any questions? Get answers on any topic at Answers. Try it now.

[Guest guest]

Misty--How to get xolair approved after getting the run around time and time

again: CRY to a sympathetic male at the insurance company and tell them how

hard it is to breathe and how you are getting worse from the stress of the

approval process. If you have a spouse, from then on let them handle all calls

with the insurance company, single point of contact, your insurance company's

pharmacy approval company, etc. Be prepared to have them make you use a

different dispensing pharmacy than the one Genentech refers people to. That

will happen at the last minute. We had to make over 125 phone calls and kept

getting the run around. I really did cry because they kept saying oh you need

to talk to somebody else. It was a nightmare too. Leigh

McLaughlin <gmclaughlin1000@...> wrote: Misty,

You sound like the perfect candidate for Xolair and your IgE level sounds as

though you'll respond well to the meds -- just a patient's perspective. My

doctor told me the higher a person's IgE the less likely Xolair will work as

well. He said he has some patients with IgE counts up around 1000 and they

haven't responded as well as I have. My IgE was 44. Anything above 30 is

considered high.

As far as the cost and insurance goes.....I was very lucky. My insurance

approved Xolair without batting an eye but I've heard they can drag their feet,

which is probably due to the cost. Once you apply you should get on the phone

and get names, ask for approval dates, ask questions, call them back, etc.....it

sounds to me like you should have little trouble getting approved.

Good luck!

Misty Lynn <mistylynnm@...> wrote:

Hi. My name is Misty, I'm 25. I was told to check this group out from

someone on WebMD. Anyways I've always had pretty mild to moderate

Asthma growing up, but since February of this year I've had nothing

but problems. I had Allergy testing and reacted pretty strongly to 18

different things. Mostly Cat hair, dander, etc etc. I started allergy

shots in March but had an anaphylactic reaction and ended up on a

ventilator in ICU on a few weeks ago (Nov 21), so theyre no longer an

option according to my PCP, Allergist and Pulmonologist. Anyways,

I've also go " sinus disease " and diabetes. I've been on Prednisone or

Sodium Medrol constantly since March which is hurting my blood sugars

and the doctors are concerned about the damage the steroids are doing

to my heart and kidneys because of the blood sugars being soo out of

control, reguardless of what we use to try and control them, when I'm

on steroids it's just uncontrollable. I've had 4 hospitalizations

since February for Asthma alone, not counting the two sinus surgeries

I've had to try and fix that.

I'm trying to find out what normal IgE levels and all are. I got a

paper in the mail saying I am a candidate for Xolair and that my IgE

was 136, but the stuff I find about IgE levels have like super high

numbers a lot higher than that. Soo I'm just confused, unless I'm

reading stuff wrong.

All three doctors have mentioned Xolair, but this is the first time

I've had an IgE run. Also how long did it take insurance to approve

it and all? I'm just really concerned because financially we cannot

afford to have a big out of pocket cost right now, because I lost my

job in July because I was unable to perform my duties because of

constant Asthma attacks and what not. And Its been hard finding a new

job because of attacks as well as the fact I've literally had 2-3

appointments a week for the past 2 months it seems.

thanks for any replies, I'm just sooo flustered with all this stuff.

Misty

---------------------------------

Any questions? Get answers on any topic at Answers. Try it now.

[Guest guest]

Misty--If you have been on steroids your ige total count will be reduced a

little bit. have you had a rast ige to inhalants? gosh you sound so much like

me. now I know why people refer to them as evil candy.

get a good air filter and put it in a clean bedroom and stay in there as much

as possible until you get it all worked out. and have your furnace and duct

work cleaned.

I had to cry to the insurance company to get it approved.

Also doctor's offices don't really have the staff to help with the process

that much either. So you kind of have to babysit the approval process and keep

expecting surprise runarounds. Leigh

Misty Lynn <mistylynnm@...> wrote:

Hi. My name is Misty, I'm 25. I was told to check this group out from

someone on WebMD. Anyways I've always had pretty mild to moderate

Asthma growing up, but since February of this year I've had nothing

but problems. I had Allergy testing and reacted pretty strongly to 18

different things. Mostly Cat hair, dander, etc etc. I started allergy

shots in March but had an anaphylactic reaction and ended up on a

ventilator in ICU on a few weeks ago (Nov 21), so theyre no longer an

option according to my PCP, Allergist and Pulmonologist. Anyways,

I've also go " sinus disease " and diabetes. I've been on Prednisone or

Sodium Medrol constantly since March which is hurting my blood sugars

and the doctors are concerned about the damage the steroids are doing

to my heart and kidneys because of the blood sugars being soo out of

control, reguardless of what we use to try and control them, when I'm

on steroids it's just uncontrollable. I've had 4 hospitalizations

since February for Asthma alone, not counting the two sinus surgeries

I've had to try and fix that.

I'm trying to find out what normal IgE levels and all are. I got a

paper in the mail saying I am a candidate for Xolair and that my IgE

was 136, but the stuff I find about IgE levels have like super high

numbers a lot higher than that. Soo I'm just confused, unless I'm

reading stuff wrong.

All three doctors have mentioned Xolair, but this is the first time

I've had an IgE run. Also how long did it take insurance to approve

it and all? I'm just really concerned because financially we cannot

afford to have a big out of pocket cost right now, because I lost my

job in July because I was unable to perform my duties because of

constant Asthma attacks and what not. And Its been hard finding a new

job because of attacks as well as the fact I've literally had 2-3

appointments a week for the past 2 months it seems.

thanks for any replies, I'm just sooo flustered with all this stuff.

Misty