Re: Excema, hives and Xolair - appeal

[Guest guest]

My GP's office has gotten Xolair approved for a lot of folks with

severe skin allergies. Those folks are having great success on

Xolair. Please do a search of past posts in this group using the

word " appeal. " You and your doctor can appeal the decision to deny

your daughter Xolair. It's worth a shot!

Addy

Group co-owner

> > >

> > > Well I just got back from a Doctors appt with my friend with

> > allergic

> > > excema. He ran an IGE blood test and we will know in a week

what

> > her

> > > level is. He said that Xolair wasn't FDA approved for excema-

so a

> > big

> > > thankyou for all your comments on my last post about that. We

took

> > all

> > > the info we found and gave it to him...

> >

> > Connie: It's the eczema Queen; Marie. Like I've posted before

(sorry

> > gang), my highest IgE level was 45,000, and the average over the

last

> > three years was between 20,000 and 29,000. Are you all ready for

> > this?

> >

> > I saw my Dematologist Thursday and saw the results of blood work

that

> > was drawn the week before. Now, I know that there are false highs

if

> > one tests their IgE levels when taking Xolair, but...and this is

the

> > unreal part...my IgE level was down to a mere 2,076! Anyone want

to

> > take a shot at that??? I was thrilled, but cautious, because it

> > belies the reports of other test results. Hmmm...Food for thought-

But

> > X has DEFINATELY made a difference in my case. So much so that I

> > realized the other day I had actually made plans to attend a

family

> > get together weeks before. I've haven't done that in 8 years,

because

> > my chronic condition, and, not know when severe flares would

occur.

> > So tell you friend there's finally HOPE:-)

> > Marie

> >

>

[Guest guest]

Here is the deal with cyclosporin, pred. or plaquenil. They are ultimately

immune

suppressors. So, while cyclosporin has less side effects than prednisone, it is

a more

radical approach. It is a essentially a cancer drug. When my urticaria and

dermographism

jumped out of control two years ago, and was getting worse by the week, my

doctor said

" cyclosporin was to radical an approach " . But, most importantly, with atopic

dermatitis it is

likely only a quick fix. I can't imagine it would turn off the process

permanently. So, she

goes on it, just be prepared for rebound. I can tell you that the one thing that

Xolair did

control for me was my urticaria and dermographism. That was almost immediate.

Her IgE

levels will be a fairly good indicator of how well Xolair will work. But, and it

is a big one,

Xolair is only approved for Allergic Asthma at this moment.

> > > > >

> > > > > Well I just got back from a Doctors appt with my friend with

> > > > allergic

> > > > > excema. He ran an IGE blood test and we will know in a week

> > what

> > > > her

> > > > > level is. He said that Xolair wasn't FDA approved for excema-

> > so a

> > > > big

> > > > > thankyou for all your comments on my last post about that. We

> > took

> > > > all

> > > > > the info we found and gave it to him...

> > > >

> > > > Connie: It's the eczema Queen; Marie. Like I've posted before

> > (sorry

> > > > gang), my highest IgE level was 45,000, and the average over the

> > last

> > > > three years was between 20,000 and 29,000. Are you all ready for

> > > > this?

> > > >

> > > > I saw my Dematologist Thursday and saw the results of blood work

> > that

> > > > was drawn the week before. Now, I know that there are false highs

> > if

> > > > one tests their IgE levels when taking Xolair, but...and this is

> > the

> > > > unreal part...my IgE level was down to a mere 2,076! Anyone want

> > to

> > > > take a shot at that??? I was thrilled, but cautious, because it

> > > > belies the reports of other test results. Hmmm...Food for thought-

> > But

> > > > X has DEFINATELY made a difference in my case. So much so that I

> > > > realized the other day I had actually made plans to attend a

> > family

> > > > get together weeks before. I've haven't done that in 8 years,

> > because

> > > > my chronic condition, and, not know when severe flares would

> > occur.

> > > > So tell you friend there's finally HOPE:-)

> > > > Marie

> > > >

> > >

> >

> >

>

[Guest guest]

I am not a doctor, but I doubt that cyclosporin will accomplish

anything long term or permanent. But, the human immune system is a

tricky thing. Sometimes it can be re-wired for awhile due to

different forms of immune suppressing meds. As to dermatographism

and chronic urticaria, there are a load of medical opinions about

it, but nothing conclusive. I got it when I was about 28 along side

my very controllable childhood asthma. The dermatographism and

urticaria stayed consisitent for about 20 years. Mine was very mild

and controlled with about 10mg of atarax every few days. Since I

have been on Xolair it has been well controlled again. So, my case

was almost certainly IgE. It is unlikey though that your daughter's

is a contact form (non-IgE). Dermatographism is not a contact

allergy. She should get on Xolair, as it is likely that some of her

allergic process will slow down.

-- In , <fgigles55@...> wrote:

>

> Thank you for the response. My daughter has a rebound on

prednisone and why she can't use anymore and I was concerned about a

rebound with the cyclosporin because of this.

> I know it won't make her AD go away but my hope is it will bring

it under enough control so we can keep on top of it. It has been so

bad for so long and with the dermagraphism it has just gets worse

everyday. I don't know what cause the dermagraphism but suspect it

was the allergic reaction to the topical steroids she has been on

for so long. I kept telling the doctors I thought she was allergic

but repeately told not possible until they did a patch test and

surprise. I am hoping her doctors will write up something for our

insurance co. and they will approve the xolair. Her IgE at last

test was almost 6,000. And it is proven she has allergic asthma but

her asthma hasn't been as bad and that is what is holding him back

from asking for xolair. Her asthma is as about as controlled as

mine which isn't bad but not under control(daily use of inhaler) and

her Ige is so much higher than mine(mine is 79) yet I was approve

for xolair and had my first shot. I feel guilty that I am getting

the shot and she is the one that needs it more.

> So I sit here and wait for her dr returned phone call and just

know it will be tomorrow because I have to be out all day aahhh.

Hopefully they will do something.

> Do you know what caused your dermographism or have you had this

for a long time?

> Again thank you so much for your help. I'll keep you posted.

jean

>

> ---- billybaroo1958 <cajjz109@...> wrote:

> > Here is the deal with cyclosporin, pred. or plaquenil. They are

ultimately immune

> > suppressors. So, while cyclosporin has less side effects than

prednisone, it is a more

> > radical approach. It is a essentially a cancer drug. When my

urticaria and dermographism

> > jumped out of control two years ago, and was getting worse by

the week, my doctor said

> > " cyclosporin was to radical an approach " . But, most importantly,

with atopic dermatitis it is

> > likely only a quick fix. I can't imagine it would turn off the

process permanently. So, she

> > goes on it, just be prepared for rebound. I can tell you that

the one thing that Xolair did

> > control for me was my urticaria and dermographism. That was

almost immediate. Her IgE

> > levels will be a fairly good indicator of how well Xolair will

work. But, and it is a big one,

> > Xolair is only approved for Allergic Asthma at this moment.

> >

> >

> >

> > > > > > >

> > > > > > > Well I just got back from a Doctors appt with my

friend with

> > > > > > allergic

> > > > > > > excema. He ran an IGE blood test and we will know in a

week

> > > > what

> > > > > > her

> > > > > > > level is. He said that Xolair wasn't FDA approved for

excema-

> > > > so a

> > > > > > big

> > > > > > > thankyou for all your comments on my last post about

that. We

> > > > took

> > > > > > all

> > > > > > > the info we found and gave it to him...

> > > > > >

> > > > > > Connie: It's the eczema Queen; Marie. Like I've posted

before

> > > > (sorry

> > > > > > gang), my highest IgE level was 45,000, and the average

over the

> > > > last

> > > > > > three years was between 20,000 and 29,000. Are you all

ready for

> > > > > > this?

> > > > > >

> > > > > > I saw my Dematologist Thursday and saw the results of

blood work

> > > > that

> > > > > > was drawn the week before. Now, I know that there are

false highs

> > > > if

> > > > > > one tests their IgE levels when taking Xolair, but...and

this is

> > > > the

> > > > > > unreal part...my IgE level was down to a mere 2,076!

Anyone want

> > > > to

> > > > > > take a shot at that??? I was thrilled, but cautious,

because it

> > > > > > belies the reports of other test results. Hmmm...Food

for thought-

> > > > But

> > > > > > X has DEFINATELY made a difference in my case. So much

so that I

> > > > > > realized the other day I had actually made plans to

attend a

> > > > family

> > > > > > get together weeks before. I've haven't done that in 8

years,

> > > > because

> > > > > > my chronic condition, and, not know when severe flares

would

> > > > occur.

> > > > > > So tell you friend there's finally HOPE:-)

> > > > > > Marie

> > > > > >

> > > > >

> > > >

> > > >

> > >

> >

> >

> >

>