Re: so no one else has experienced a decrease in their ige levels from their peak?

[Guest guest]

First things first....I'm not a doctor or nurse, so if there are any Dr.'s or

nurses in here who also read this and I have made a few mistakes here feel free

to set me straight.

What I have learned about getting your IgE tested, before during and after

Xolair is injected, is that your levels will fluctuate because MOST of the

tests CAN NOT tell the difference between bound and unbound IgE that has

attached itself to the mast cells. The reason why your IgE levels

fluctuated so much PROBABLY was because of when your levels were checked in

comparison to then you actually had an injection. If I remember correctly

Xolair's " half life " is like 23 days. Good old high school Chemistry tells us

that: The time elapsed before half of the original quantity has decayed.

However, unlike in an exponential decay, the half-life depends on the initial

quantity, and changes over time as the quantity decays.

So.....if I read that right it takes 23 days before for half of if it starts

to break down.

So you got your IgE level checked before your first injection and it was at 250.

You get your injection and then your IgE level is 800-but at what point in the

23 day cycle was you level checked? Same with when your level was at 40 and then

again back up to 250. IF your doctors can compare the records of when you were

injected to when you were tested they may find that they tested you before the

anti-IgE had not broken down or had only partially broken down when you were

tested. Genentec and Novartis do not recommend having your IgE tested while

you are on Xolair, because most places that do testing don't have the correct

equipment to differentiate bound and unbound IgE.

I hope that helps!!

K

phew...my brain hurts.

> From: mccallalton <mccallalton@...>

> Subject: [ ] so no one else has experienced a decrease in their ige

levels from their peak?

>

> Date: Saturday, February 7, 2009, 11:03 PM

> my ige went up from around 250 to 800 and then recently when

> i had it

> checked it was like 40...hmmm knew that had to be so wrong

> it was

> repeated at another lab and it was 150 and my internist

> repeated it at

> the orginal lab and the result was 250 again. something is

> wrong

> somewhere and i do not know if it is me or the labs or the

> way my

> xolair has been handled and injected (shaken at times,

> injected thru

> or into veins,etc.) anyone have any thoughts on this?

> thanks,

[Guest guest]

According to my doc, our IgE levels VARY all the time. I do not

understand the reason for this. Prior to Xolair I have had three IgE

tests (that I remember) and all of my scores were very different,

ranging from 535ish to 800something.

I don't know if each of has a typical RANGE or what.

There is now an IgE test that discriminates between bound and unbound

IgE. Terry, another of our group members, had one done since starting

Xolair and got a higher IgE score (if I remember right) then he'd had

previously.

Addy

Group co-owner

>

> > From: mccallalton <mccallalton@...>

> > Subject: [ ] so no one else has experienced a decrease

in their ige levels from their peak?

> >

> > Date: Saturday, February 7, 2009, 11:03 PM

> > my ige went up from around 250 to 800 and then recently when

> > i had it

> > checked it was like 40...hmmm knew that had to be so wrong

> > it was

> > repeated at another lab and it was 150 and my internist

> > repeated it at

> > the orginal lab and the result was 250 again. something is

> > wrong

> > somewhere and i do not know if it is me or the labs or the

> > way my

> > xolair has been handled and injected (shaken at times,

> > injected thru

> > or into veins,etc.) anyone have any thoughts on this?

> > thanks,

>

[Guest guest]

Right, Addy. I started two years ago at 945, and my most recent test, that was

supposed to show unbound only, came in at 1900. Doc scratched his head and then

his tush (using different hands for medical reasons), and said forget the IgEs -

if you feel better, it's working.

OP

----- Original Message -----

From: pyle456

Sent: Sunday, February 08, 2009 2:27 PM

Subject: [ ] Re: so no one else has experienced a decrease in their

ige levels from their peak?

According to my doc, our IgE levels VARY all the time. I do not

understand the reason for this. Prior to Xolair I have had three IgE

tests (that I remember) and all of my scores were very different,

ranging from 535ish to 800something.

I don't know if each of has a typical RANGE or what.

There is now an IgE test that discriminates between bound and unbound

IgE. Terry, another of our group members, had one done since starting

Xolair and got a higher IgE score (if I remember right) then he'd had

previously.

Addy

Group co-owner

>

> > From: mccallalton <mccallalton@...>

> > Subject: [ ] so no one else has experienced a decrease

in their ige levels from their peak?

> >

> > Date: Saturday, February 7, 2009, 11:03 PM

> > my ige went up from around 250 to 800 and then recently when

> > i had it

> > checked it was like 40...hmmm knew that had to be so wrong

> > it was

> > repeated at another lab and it was 150 and my internist

> > repeated it at

> > the orginal lab and the result was 250 again. something is

> > wrong

> > somewhere and i do not know if it is me or the labs or the

> > way my

> > xolair has been handled and injected (shaken at times,

> > injected thru

> > or into veins,etc.) anyone have any thoughts on this?

> > thanks,

>

[Guest guest]

Hi OP:

I don't remember what my ige levels were.  As far as I know my allergist is not

taking any blood for testing, I'll have to ask my pulmonary doctor?

I do get three shots (375mg) every two weeks.

Kathy

________________________________

From: Terry <onabeach@...>

Sent: Monday, February 9, 2009 6:49:24 PM

Subject: Re: [ ] Re: so no one else has experienced a decrease in

their ige levels from their peak?

Right, Addy. I started two years ago at 945, and my most recent test, that was

supposed to show unbound only, came in at 1900. Doc scratched his head and then

his tush (using different hands for medical reasons), and said forget the IgEs -

if you feel better, it's working.

OP

----- Original Message -----

From: pyle456

Sent: Sunday, February 08, 2009 2:27 PM

Subject: [ ] Re: so no one else has experienced a decrease in their

ige levels from their peak?

According to my doc, our IgE levels VARY all the time. I do not

understand the reason for this. Prior to Xolair I have had three IgE

tests (that I remember) and all of my scores were very different,

ranging from 535ish to 800something.

I don't know if each of has a typical RANGE or what.

There is now an IgE test that discriminates between bound and unbound

IgE. Terry, another of our group members, had one done since starting

Xolair and got a higher IgE score (if I remember right) then he'd had

previously.

Addy

Group co-owner

>

> > From: mccallalton <mccallalton@ ...>

> > Subject: [ ] so no one else has experienced a decrease

in their ige levels from their peak?

> >

> > Date: Saturday, February 7, 2009, 11:03 PM

> > my ige went up from around 250 to 800 and then recently when

> > i had it

> > checked it was like 40...hmmm knew that had to be so wrong

> > it was

> > repeated at another lab and it was 150 and my internist

> > repeated it at

> > the orginal lab and the result was 250 again. something is

> > wrong

> > somewhere and i do not know if it is me or the labs or the

> > way my

> > xolair has been handled and injected (shaken at times,

> > injected thru

> > or into veins,etc.) anyone have any thoughts on this?

> > thanks,

>

[Guest guest]

>

> Hi OP:

>

> I don't remember what my ige levels were.  As far as I know my

allergist is not taking any blood for testing, I'll have to ask my

pulmonary doctor?

> I do get three shots (375mg) every two weeks.

>

> Kathy

>

>

>

I haven't had my IGE checked since my pre-testing for Xolair in 2003.

If my doc thinks I need another one, I will follow his instructions.

Actually, we don't really care what the level is because I am doing so

well.

[Guest guest]

>

> My Pulmo does not care what my numbers are either. He just wanted me

> on Xolair and needed a number. I've been on Xolair for over 3 years

> and have never been retested.

>

> Ron

>

> On Feb 10, 2009, at 8:20 PM, uca79iii wrote:

>

>>

>> >

>> > Hi OP:

>> >

>> > I don't remember what my ige levels were. As far as I know my

>> allergist is not taking any blood for testing, I'll have to ask my

>> pulmonary doctor?

>> > I do get three shots (375mg) every two weeks.

>> >

>> > Kathy

>> >

>> >

>> >

>>

>> I haven't had my IGE checked since my pre-testing for Xolair in 2003.

>> If my doc thinks I need another one, I will follow his instructions.

>>

>> Actually, we don't really care what the level is because I am doing

>> so

>> well.

>>

>>

>>

>

[Guest guest]

Hi, I also get three shots every two weeks (375 mg) - my IgE levels vary between

4,000 and 6,000. My Yale doctor wants me to go to 4 shots every two weeks for a

couple of months to see how well I tolerate it - as an experimental dose under

Yale's supervision. I'm tempted. It would also be nice if they could test my

IgE for bound vs. Unbound to see what levels are still around bothering me.

Anne

________________________________

From: kathy eisen <kathyh1942@...>

Sent: Tuesday, February 10, 2009 5:58:57 PM

Subject: Re: [ ] Re: so no one else has experienced a decrease in

their ige levels from their peak?

Hi OP:

I don't remember what my ige levels were.. As far as I know my allergist is not

taking any blood for testing, I'll have to ask my pulmonary doctor?

I do get three shots (375mg) every two weeks.

Kathy

____________ _________ _________ __

From: Terry <onabeachcharter (DOT) net>

Sent: Monday, February 9, 2009 6:49:24 PM

Subject: Re: [ ] Re: so no one else has experienced a decrease in

their ige levels from their peak?

Right, Addy. I started two years ago at 945, and my most recent test, that was

supposed to show unbound only, came in at 1900. Doc scratched his head and then

his tush (using different hands for medical reasons), and said forget the IgEs -

if you feel better, it's working.

OP

----- Original Message -----

From: pyle456

Sent: Sunday, February 08, 2009 2:27 PM

Subject: [ ] Re: so no one else has experienced a decrease in their

ige levels from their peak?

According to my doc, our IgE levels VARY all the time. I do not

understand the reason for this. Prior to Xolair I have had three IgE

tests (that I remember) and all of my scores were very different,

ranging from 535ish to 800something.

I don't know if each of has a typical RANGE or what.

There is now an IgE test that discriminates between bound and unbound

IgE. Terry, another of our group members, had one done since starting

Xolair and got a higher IgE score (if I remember right) then he'd had

previously.

Addy

Group co-owner

>

> > From: mccallalton <mccallalton@ ...>

> > Subject: [ ] so no one else has experienced a decrease

in their ige levels from their peak?

> >

> > Date: Saturday, February 7, 2009, 11:03 PM

> > my ige went up from around 250 to 800 and then recently when

> > i had it

> > checked it was like 40...hmmm knew that had to be so wrong

> > it was

> > repeated at another lab and it was 150 and my internist

> > repeated it at

> > the orginal lab and the result was 250 again. something is

> > wrong

> > somewhere and i do not know if it is me or the labs or the

> > way my

> > xolair has been handled and injected (shaken at times,

> > injected thru

> > or into veins,etc.) anyone have any thoughts on this?

> > thanks,

>

[Guest guest]

--Hi Anne.

How long have you been on xolair? How is it working? I'm hoping my daughter

gets approved. Her levels are 6000 and I was told that was too high. that was

almost a yr ago. today her allergist said he was going to submit her for

approval.

Have you had any reactions? I get xolair once a month and the lowest dose.

For my dd she will get two shots every 2 weeks so it does scare me a little.

Sorry for all the questions but when I read your post and saw your levels it was

close to my daughters. thanks. jean

- In , Magnuson <magnuson.mary@...> wrote:

>

> Hi, I also get three shots every two weeks (375 mg) - my IgE levels vary

between 4,000 and 6,000. My Yale doctor wants me to go to 4 shots every two

weeks for a couple of months to see how well I tolerate it - as an experimental

dose under Yale's supervision. I'm tempted. It would also be nice if they

could test my IgE for bound vs. Unbound to see what levels are still around

bothering me.

> Anne

>

>

>

> ________________________________

> From: kathy eisen <kathyh1942@...>

>

> Sent: Tuesday, February 10, 2009 5:58:57 PM

> Subject: Re: [ ] Re: so no one else has experienced a decrease in

their ige levels from their peak?

>

>

> Hi OP:

>

> I don't remember what my ige levels were.. As far as I know my allergist is

not taking any blood for testing, I'll have to ask my pulmonary doctor?

> I do get three shots (375mg) every two weeks.

>

> Kathy

>

> ____________ _________ _________ __

> From: Terry <onabeachcharter (DOT) net>

>

> Sent: Monday, February 9, 2009 6:49:24 PM

> Subject: Re: [ ] Re: so no one else has experienced a decrease in

their ige levels from their peak?

>

> Right, Addy. I started two years ago at 945, and my most recent test, that was

supposed to show unbound only, came in at 1900. Doc scratched his head and then

his tush (using different hands for medical reasons), and said forget the IgEs -

if you feel better, it's working.

>

> OP

>

> ----- Original Message -----

> From: pyle456

>

> Sent: Sunday, February 08, 2009 2:27 PM

> Subject: [ ] Re: so no one else has experienced a decrease in their

ige levels from their peak?

>

> According to my doc, our IgE levels VARY all the time. I do not

> understand the reason for this. Prior to Xolair I have had three IgE

> tests (that I remember) and all of my scores were very different,

> ranging from 535ish to 800something.

>

> I don't know if each of has a typical RANGE or what.

>

> There is now an IgE test that discriminates between bound and unbound

> IgE. Terry, another of our group members, had one done since starting

> Xolair and got a higher IgE score (if I remember right) then he'd had

> previously.

>

> Addy

> Group co-owner

>

>

> >

> > > From: mccallalton <mccallalton@ ...>

> > > Subject: [ ] so no one else has experienced a decrease

> in their ige levels from their peak?

> > >

> > > Date: Saturday, February 7, 2009, 11:03 PM

> > > my ige went up from around 250 to 800 and then recently when

> > > i had it

> > > checked it was like 40...hmmm knew that had to be so wrong

> > > it was

> > > repeated at another lab and it was 150 and my internist

> > > repeated it at

> > > the orginal lab and the result was 250 again. something is

> > > wrong

> > > somewhere and i do not know if it is me or the labs or the

> > > way my

> > > xolair has been handled and injected (shaken at times,

> > > injected thru

> > > or into veins,etc.) anyone have any thoughts on this?

> > > thanks,

> >

>

>

[Guest guest]

Is her IGE 6000? Check that number please. Xolair can not be administered

unless your IGE falls within a certain range and 6000 would be off the charts.

________________________________

From: gigles_1955 <fgigles55@...>

Sent: Monday, March 9, 2009 5:24:07 PM

Subject: [ ] Re: so no one else has experienced a decrease in their

ige levels from their peak?

--Hi Anne.

How long have you been on xolair? How is it working? I'm hoping my daughter

gets approved. Her levels are 6000 and I was told that was too high. that was

almost a yr ago. today her allergist said he was going to submit her for

approval.

Have you had any reactions? I get xolair once a month and the lowest dose.

For my dd she will get two shots every 2 weeks so it does scare me a little.

Sorry for all the questions but when I read your post and saw your levels it was

close to my daughters. thanks. jean

- In , Magnuson <magnuson.mary@ ...> wrote:

>

> Hi, I also get three shots every two weeks (375 mg) - my IgE levels vary

between 4,000 and 6,000. My Yale doctor wants me to go to 4 shots every two

weeks for a couple of months to see how well I tolerate it - as an experimental

dose under Yale's supervision. I'm tempted. It would also be nice if they

could test my IgE for bound vs. Unbound to see what levels are still around

bothering me.

> Anne

>

>

>

> ____________ _________ _________ __

> From: kathy eisen <kathyh1942@ ...>

>

> Sent: Tuesday, February 10, 2009 5:58:57 PM

> Subject: Re: [ ] Re: so no one else has experienced a decrease in

their ige levels from their peak?

>

>

> Hi OP:

>

> I don't remember what my ige levels were.. As far as I know my allergist is

not taking any blood for testing, I'll have to ask my pulmonary doctor?

> I do get three shots (375mg) every two weeks.

>

> Kathy

>

> ____________ _________ _________ __

> From: Terry <onabeachcharter (DOT) net>

>

> Sent: Monday, February 9, 2009 6:49:24 PM

> Subject: Re: [ ] Re: so no one else has experienced a decrease in

their ige levels from their peak?

>

> Right, Addy. I started two years ago at 945, and my most recent test, that was

supposed to show unbound only, came in at 1900. Doc scratched his head and then

his tush (using different hands for medical reasons), and said forget the IgEs -

if you feel better, it's working.

>

> OP

>

> ----- Original Message -----

> From: pyle456

>

> Sent: Sunday, February 08, 2009 2:27 PM

> Subject: [ ] Re: so no one else has experienced a decrease in their

ige levels from their peak?

>

> According to my doc, our IgE levels VARY all the time. I do not

> understand the reason for this. Prior to Xolair I have had three IgE

> tests (that I remember) and all of my scores were very different,

> ranging from 535ish to 800something.

>

> I don't know if each of has a typical RANGE or what.

>

> There is now an IgE test that discriminates between bound and unbound

> IgE. Terry, another of our group members, had one done since starting

> Xolair and got a higher IgE score (if I remember right) then he'd had

> previously.

>

> Addy

> Group co-owner

>

>

> >

> > > From: mccallalton <mccallalton@ ...>

> > > Subject: [ ] so no one else has experienced a decrease

> in their ige levels from their peak?

> > >

> > > Date: Saturday, February 7, 2009, 11:03 PM

> > > my ige went up from around 250 to 800 and then recently when

> > > i had it

> > > checked it was like 40...hmmm knew that had to be so wrong

> > > it was

> > > repeated at another lab and it was 150 and my internist

> > > repeated it at

> > > the orginal lab and the result was 250 again. something is

> > > wrong

> > > somewhere and i do not know if it is me or the labs or the

> > > way my

> > > xolair has been handled and injected (shaken at times,

> > > injected thru

> > > or into veins,etc.) anyone have any thoughts on this?

> > > thanks,

> >

>

>

[Guest guest]

There are PLENTY of patients on Xolair with IgE levels much higher than the

" range. " 6000 is off the charts, but is not unheard of.

Addy

Group co-owner

> > >

> > > > From: mccallalton <mccallalton@ ...>

> > > > Subject: [ ] so no one else has experienced a decrease

> > in their ige levels from their peak?

> > > >

> > > > Date: Saturday, February 7, 2009, 11:03 PM

> > > > my ige went up from around 250 to 800 and then recently when

> > > > i had it

> > > > checked it was like 40...hmmm knew that had to be so wrong

> > > > it was

> > > > repeated at another lab and it was 150 and my internist

> > > > repeated it at

> > > > the orginal lab and the result was 250 again. something is

> > > > wrong

> > > > somewhere and i do not know if it is me or the labs or the

> > > > way my

> > > > xolair has been handled and injected (shaken at times,

> > > > injected thru

> > > > or into veins,etc.) anyone have any thoughts on this?

> > > > thanks,

> > >

> >

> >

[Guest guest]

-Her IgE level is 5,981. But didn't I just read where Anne's was between

4,000 and 6,000 and she is receiving xoliar shots?

-- In , Leigh McCall-Alton <mccallalton@...> wrote:

>

> Is her IGE 6000? Check that number please. Xolair can not be administered

unless your IGE falls within a certain range and 6000 would be off the charts.

>

>

>

>

> ________________________________

> From: gigles_1955 <fgigles55@...>

>

> Sent: Monday, March 9, 2009 5:24:07 PM

> Subject: [ ] Re: so no one else has experienced a decrease in their

ige levels from their peak?

>

>

> --Hi Anne.

> How long have you been on xolair? How is it working? I'm hoping my daughter

gets approved. Her levels are 6000 and I was told that was too high. that was

almost a yr ago. today her allergist said he was going to submit her for

approval.

> Have you had any reactions? I get xolair once a month and the lowest dose.

For my dd she will get two shots every 2 weeks so it does scare me a little.

Sorry for all the questions but when I read your post and saw your levels it was

close to my daughters. thanks. jean

>

> - In , Magnuson <magnuson.mary@ ...> wrote:

> >

> > Hi, I also get three shots every two weeks (375 mg) - my IgE levels vary

between 4,000 and 6,000. My Yale doctor wants me to go to 4 shots every two

weeks for a couple of months to see how well I tolerate it - as an experimental

dose under Yale's supervision. I'm tempted. It would also be nice if they

could test my IgE for bound vs. Unbound to see what levels are still around

bothering me.

> > Anne

> >

> >

> >

> > ____________ _________ _________ __

> > From: kathy eisen <kathyh1942@ ...>

> >

> > Sent: Tuesday, February 10, 2009 5:58:57 PM

> > Subject: Re: [ ] Re: so no one else has experienced a decrease in

their ige levels from their peak?

> >

> >

> > Hi OP:

> >

> > I don't remember what my ige levels were.. As far as I know my allergist is

not taking any blood for testing, I'll have to ask my pulmonary doctor?

> > I do get three shots (375mg) every two weeks.

> >

> > Kathy

> >

> > ____________ _________ _________ __

> > From: Terry <onabeachcharter (DOT) net>

> >

> > Sent: Monday, February 9, 2009 6:49:24 PM

> > Subject: Re: [ ] Re: so no one else has experienced a decrease in

their ige levels from their peak?

> >

> > Right, Addy. I started two years ago at 945, and my most recent test, that

was supposed to show unbound only, came in at 1900. Doc scratched his head and

then his tush (using different hands for medical reasons), and said forget the

IgEs - if you feel better, it's working.

> >

> > OP

> >

> > ----- Original Message -----

> > From: pyle456

> >

> > Sent: Sunday, February 08, 2009 2:27 PM

> > Subject: [ ] Re: so no one else has experienced a decrease in

their ige levels from their peak?

> >

> > According to my doc, our IgE levels VARY all the time. I do not

> > understand the reason for this. Prior to Xolair I have had three IgE

> > tests (that I remember) and all of my scores were very different,

> > ranging from 535ish to 800something.

> >

> > I don't know if each of has a typical RANGE or what.

> >

> > There is now an IgE test that discriminates between bound and unbound

> > IgE. Terry, another of our group members, had one done since starting

> > Xolair and got a higher IgE score (if I remember right) then he'd had

> > previously.

> >

> > Addy

> > Group co-owner

> >

> >

> > >

> > > > From: mccallalton <mccallalton@ ...>

> > > > Subject: [ ] so no one else has experienced a decrease

> > in their ige levels from their peak?

> > > >

> > > > Date: Saturday, February 7, 2009, 11:03 PM

> > > > my ige went up from around 250 to 800 and then recently when

> > > > i had it

> > > > checked it was like 40...hmmm knew that had to be so wrong

> > > > it was

> > > > repeated at another lab and it was 150 and my internist

> > > > repeated it at

> > > > the orginal lab and the result was 250 again. something is

> > > > wrong

> > > > somewhere and i do not know if it is me or the labs or the

> > > > way my

> > > > xolair has been handled and injected (shaken at times,

> > > > injected thru

> > > > or into veins,etc.) anyone have any thoughts on this?

> > > > thanks,

> > >

> >

> >

[Guest guest]

thanks Addy. jean

> > > >

> > > > > From: mccallalton <mccallalton@ ...>

> > > > > Subject: [ ] so no one else has experienced a decrease

> > > in their ige levels from their peak?

> > > > >

> > > > > Date: Saturday, February 7, 2009, 11:03 PM

> > > > > my ige went up from around 250 to 800 and then recently when

> > > > > i had it

> > > > > checked it was like 40...hmmm knew that had to be so wrong

> > > > > it was

> > > > > repeated at another lab and it was 150 and my internist

> > > > > repeated it at

> > > > > the orginal lab and the result was 250 again. something is

> > > > > wrong

> > > > > somewhere and i do not know if it is me or the labs or the

> > > > > way my

> > > > > xolair has been handled and injected (shaken at times,

> > > > > injected thru

> > > > > or into veins,etc.) anyone have any thoughts on this?

> > > > > thanks,

> > > >

> > >

> > >

[Guest guest]

I have been on Xolair for two years this last February 2009. I had almost

immediate relief from asthma symptoms within a day though not cured by any

means. I was off prednisone by May of 2007. My Yale Dr. says he has patients

with IgE over 10,000 that are on Xolair who are doing fine.

Anne

________________________________

From: gigles_1955 <fgigles55@...>

Sent: Monday, March 9, 2009 5:24:07 PM

Subject: [ ] Re: so no one else has experienced a decrease in their

ige levels from their peak?

--Hi Anne.

How long have you been on xolair? How is it working? I'm hoping my daughter

gets approved. Her levels are 6000 and I was told that was too high. that was

almost a yr ago. today her allergist said he was going to submit her for

approval.

Have you had any reactions? I get xolair once a month and the lowest dose.

For my dd she will get two shots every 2 weeks so it does scare me a little.

Sorry for all the questions but when I read your post and saw your levels it was

close to my daughters. thanks. jean

- In , Magnuson <magnuson.mary@ ...> wrote:

>

> Hi, I also get three shots every two weeks (375 mg) - my IgE levels vary

between 4,000 and 6,000. My Yale doctor wants me to go to 4 shots every two

weeks for a couple of months to see how well I tolerate it - as an experimental

dose under Yale's supervision. I'm tempted. It would also be nice if they

could test my IgE for bound vs. Unbound to see what levels are still around

bothering me.

> Anne

>

>

>

> ____________ _________ _________ __

> From: kathy eisen <kathyh1942@ ...>

>

> Sent: Tuesday, February 10, 2009 5:58:57 PM

> Subject: Re: [ ] Re: so no one else has experienced a decrease in

their ige levels from their peak?

>

>

> Hi OP:

>

> I don't remember what my ige levels were.. As far as I know my allergist is

not taking any blood for testing, I'll have to ask my pulmonary doctor?

> I do get three shots (375mg) every two weeks.

>

> Kathy

>

> ____________ _________ _________ __

> From: Terry <onabeachcharter (DOT) net>

>

> Sent: Monday, February 9, 2009 6:49:24 PM

> Subject: Re: [ ] Re: so no one else has experienced a decrease in

their ige levels from their peak?

>

> Right, Addy. I started two years ago at 945, and my most recent test, that was

supposed to show unbound only, came in at 1900. Doc scratched his head and then

his tush (using different hands for medical reasons), and said forget the IgEs -

if you feel better, it's working.

>

> OP

>

> ----- Original Message -----

> From: pyle456

>

> Sent: Sunday, February 08, 2009 2:27 PM

> Subject: [ ] Re: so no one else has experienced a decrease in their

ige levels from their peak?

>

> According to my doc, our IgE levels VARY all the time. I do not

> understand the reason for this. Prior to Xolair I have had three IgE

> tests (that I remember) and all of my scores were very different,

> ranging from 535ish to 800something.

>

> I don't know if each of has a typical RANGE or what.

>

> There is now an IgE test that discriminates between bound and unbound

> IgE. Terry, another of our group members, had one done since starting

> Xolair and got a higher IgE score (if I remember right) then he'd had

> previously.

>

> Addy

> Group co-owner

>

>

> >

> > > From: mccallalton <mccallalton@ ...>

> > > Subject: [ ] so no one else has experienced a decrease

> in their ige levels from their peak?

> > >

> > > Date: Saturday, February 7, 2009, 11:03 PM

> > > my ige went up from around 250 to 800 and then recently when

> > > i had it

> > > checked it was like 40...hmmm knew that had to be so wrong

> > > it was

> > > repeated at another lab and it was 150 and my internist

> > > repeated it at

> > > the orginal lab and the result was 250 again. something is

> > > wrong

> > > somewhere and i do not know if it is me or the labs or the

> > > way my

> > > xolair has been handled and injected (shaken at times,

> > > injected thru

> > > or into veins,etc.) anyone have any thoughts on this?

> > > thanks,

> >

>

>

[Guest guest]

Thank you .

I am getting discourange reading about xolair and not being good for high IgE

levels. I have been trying to research it for atopic dermatitis and have ask

other groups but most say my dd prob; wont get approved anyway because (1) it is

being used off label, even though it is being sent in to our ins. by her asthma

dr.(she also has asthma but not as bad as her AD). and (2) her IgE is too high.

I dont like waiting around for my ins. to decide. it gives me too much time

to think and rethink things, aahhh.

anyway thanks. jean

>

> I have been on Xolair for two years this last February 2009. I had almost

immediate relief from asthma symptoms within a day though not cured by any

means. I was off prednisone by May of 2007. My Yale Dr. says he has patients

with IgE over 10,000 that are on Xolair who are doing fine.

> Anne

>

>

>

> ________________________________

> From: gigles_1955 <fgigles55@...>

>

> Sent: Monday, March 9, 2009 5:24:07 PM

> Subject: [ ] Re: so no one else has experienced a decrease in their

ige levels from their peak?

>

>

> --Hi Anne.

> How long have you been on xolair? How is it working? I'm hoping my daughter

gets approved. Her levels are 6000 and I was told that was too high. that was

almost a yr ago. today her allergist said he was going to submit her for

approval.

> Have you had any reactions? I get xolair once a month and the lowest dose.

For my dd she will get two shots every 2 weeks so it does scare me a little.

Sorry for all the questions but when I read your post and saw your levels it was

close to my daughters. thanks. jean

>

> - In , Magnuson <magnuson.mary@ ...> wrote:

> >

> > Hi, I also get three shots every two weeks (375 mg) - my IgE levels vary

between 4,000 and 6,000. My Yale doctor wants me to go to 4 shots every two

weeks for a couple of months to see how well I tolerate it - as an experimental

dose under Yale's supervision. I'm tempted. It would also be nice if they

could test my IgE for bound vs. Unbound to see what levels are still around

bothering me.

> > Anne

> >

> >

> >

> > ____________ _________ _________ __

> > From: kathy eisen <kathyh1942@ ...>

> >

> > Sent: Tuesday, February 10, 2009 5:58:57 PM

> > Subject: Re: [ ] Re: so no one else has experienced a decrease in

their ige levels from their peak?

> >

> >

> > Hi OP:

> >

> > I don't remember what my ige levels were.. As far as I know my allergist is

not taking any blood for testing, I'll have to ask my pulmonary doctor?

> > I do get three shots (375mg) every two weeks.

> >

> > Kathy

> >

> > ____________ _________ _________ __

> > From: Terry <onabeachcharter (DOT) net>

> >

> > Sent: Monday, February 9, 2009 6:49:24 PM

> > Subject: Re: [ ] Re: so no one else has experienced a decrease in

their ige levels from their peak?

> >

> > Right, Addy. I started two years ago at 945, and my most recent test, that

was supposed to show unbound only, came in at 1900. Doc scratched his head and

then his tush (using different hands for medical reasons), and said forget the

IgEs - if you feel better, it's working.

> >

> > OP

> >

> > ----- Original Message -----

> > From: pyle456

> >

> > Sent: Sunday, February 08, 2009 2:27 PM

> > Subject: [ ] Re: so no one else has experienced a decrease in

their ige levels from their peak?

> >

> > According to my doc, our IgE levels VARY all the time. I do not

> > understand the reason for this. Prior to Xolair I have had three IgE

> > tests (that I remember) and all of my scores were very different,

> > ranging from 535ish to 800something.

> >

> > I don't know if each of has a typical RANGE or what.

> >

> > There is now an IgE test that discriminates between bound and unbound

> > IgE. Terry, another of our group members, had one done since starting

> > Xolair and got a higher IgE score (if I remember right) then he'd had

> > previously.

> >

> > Addy

> > Group co-owner

> >

> >

> > >

> > > > From: mccallalton <mccallalton@ ...>

> > > > Subject: [ ] so no one else has experienced a decrease

> > in their ige levels from their peak?

> > > >

> > > > Date: Saturday, February 7, 2009, 11:03 PM

> > > > my ige went up from around 250 to 800 and then recently when

> > > > i had it

> > > > checked it was like 40...hmmm knew that had to be so wrong

> > > > it was

> > > > repeated at another lab and it was 150 and my internist

> > > > repeated it at

> > > > the orginal lab and the result was 250 again. something is

> > > > wrong

> > > > somewhere and i do not know if it is me or the labs or the

> > > > way my

> > > > xolair has been handled and injected (shaken at times,

> > > > injected thru

> > > > or into veins,etc.) anyone have any thoughts on this?

> > > > thanks,

> > >

> >

> >