Re: Re: Excema, hives and Xolair - appeal

[Guest guest]

Addy,

Thank you and everyone else for the advice. I will read past post

tomorrow(going to bed its 124am). I am going to ask her allergist to sumit for

approval. If I can get it there is no reason she shouldn/t be able to. jean

--

-- pyle456 <coachmac@...> wrote:

> 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]

Hi Addy,

This might be a little off subject but my 17 yr old has sever atopic

dermatitis with dermagraphism. She is in constant agony from the itching. I am

trying to get xolair approved for her but her allergist and derm. both want to

try cyclosporin first. I don't know if you know anything about cyclosporin or

not but you seem very informed on the xolair so I thought I ask. Do you know of

anyone who has server atopic that has use cyclosporin and xolair(at different

times) and what their experience was? I hope I'm not breaking any rules being a

little off topic but I am so desperate for some help for my daughter. I am

still fighting for the xolair. Thank you and anyone who might have an answer.

Jean

---- pyle456 <coachmac@...> wrote:

> 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]

I hope Xolair gets approved for you because in addition to being an asthmatic I

recently began developing Excema. I'd get into bed each night and it would feel

as though a million critters were crawling all over me. It was just intense

itching. My primary allergen is dust mites, which can't be escaped. When I went

on the X the excema was stopped in it's tracks. Unfortunately, X is not intended

for excema so your insurance company would have to approve it for off-label use,

which is pretty unlikely. Best of luck!

Moderator's note: Addy's doctors have had good luck at getting X approved for

off-label use for severe allergic skin conditions, so it is possible!

From: billybaroo1958 & lt;cajjz109@... & gt;

Subject: [ ] Re: Excema, hives and Xolair - appeal

Date: Thursday, June 12, 2008, 1:55 AM

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.

& gt; & gt; & gt; & gt; & gt;

& gt; & gt; & gt; & gt; & gt; Well I just got back from a Doctors appt with my friend

with

& gt; & gt; & gt; & gt; allergic

& gt; & gt; & gt; & gt; & gt; excema. He ran an IGE blood test and we will know in a

week

& gt; & gt; what

& gt; & gt; & gt; & gt; her

& gt; & gt; & gt; & gt; & gt; level is. He said that Xolair wasn't FDA approved for

excema-

& gt; & gt; so a

& gt; & gt; & gt; & gt; big

& gt; & gt; & gt; & gt; & gt; thankyou for all your comments on my last post about

that. We

& gt; & gt; took

& gt; & gt; & gt; & gt; all

& gt; & gt; & gt; & gt; & gt; the info we found and gave it to him...

& gt; & gt; & gt; & gt;

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

before

& gt; & gt; (sorry

& gt; & gt; & gt; & gt; gang), my highest IgE level was 45,000, and the average over

the

& gt; & gt; last

& gt; & gt; & gt; & gt; three years was between 20,000 and 29,000. Are you all ready

for

& gt; & gt; & gt; & gt; this?

& gt; & gt; & gt; & gt;

& gt; & gt; & gt; & gt; I saw my Dematologist Thursday and saw the results of blood

work

& gt; & gt; that

& gt; & gt; & gt; & gt; was drawn the week before. Now, I know that there are false

highs

& gt; & gt; if

& gt; & gt; & gt; & gt; one tests their IgE levels when taking Xolair, but...and

this is

& gt; & gt; the

& gt; & gt; & gt; & gt; unreal part...my IgE level was down to a mere 2,076! Anyone

want

& gt; & gt; to

& gt; & gt; & gt; & gt; take a shot at that??? I was thrilled, but cautious, because

it

& gt; & gt; & gt; & gt; belies the reports of other test results. Hmmm...Food for

thought-

& gt; & gt; But

& gt; & gt; & gt; & gt; X has DEFINATELY made a difference in my case. So much so

that I

& gt; & gt; & gt; & gt; realized the other day I had actually made plans to attend a

& gt; & gt; family

& gt; & gt; & gt; & gt; get together weeks before. I've haven't done that in 8

years,

& gt; & gt; because

& gt; & gt; & gt; & gt; my chronic condition, and, not know when severe flares would

& gt; & gt; occur.

& gt; & gt; & gt; & gt; So tell you friend there's finally HOPE:-)

& gt; & gt; & gt; & gt; Marie

& gt; & gt; & gt; & gt;

& gt; & gt; & gt;

& gt; & gt;

& gt; & gt;

& gt;

[Guest guest]

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

> > > > >

> > > >

> > >

> > >

> >

>

>

>

[Guest guest]

Thanks . Thats what my daughter says it feels like. I am trying to get it

approved. jean

---- McLaughlin <gmclaughlin1000@...> wrote:

> I hope Xolair gets approved for you because in addition to being an asthmatic

I recently began developing Excema. I'd get into bed each night and it would

feel as though a million critters were crawling all over me. It was just intense

itching. My primary allergen is dust mites, which can't be escaped. When I went

on the X the excema was stopped in it's tracks. Unfortunately, X is not intended

for excema so your insurance company would have to approve it for off-label use,

which is pretty unlikely. Best of luck!

>

>

> Moderator's note: Addy's doctors have had good luck at getting X approved for

off-label use for severe allergic skin conditions, so it is possible!

>

>

> From: billybaroo1958 & lt;cajjz109@... & gt;

> Subject: [ ] Re: Excema, hives and Xolair - appeal

>

> Date: Thursday, June 12, 2008, 1:55 AM

>

>

>

>

>

>

>

>

>

>

>

> 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.

>

>

>

>

>

> & gt; & gt; & gt; & gt; & gt;

>

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

friend with

>

> & gt; & gt; & gt; & gt; allergic

>

> & gt; & gt; & gt; & gt; & gt; excema. He ran an IGE blood test and we will know in

a week

>

> & gt; & gt; what

>

> & gt; & gt; & gt; & gt; her

>

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

excema-

>

> & gt; & gt; so a

>

> & gt; & gt; & gt; & gt; big

>

> & gt; & gt; & gt; & gt; & gt; thankyou for all your comments on my last post about

that. We

>

> & gt; & gt; took

>

> & gt; & gt; & gt; & gt; all

>

> & gt; & gt; & gt; & gt; & gt; the info we found and gave it to him...

>

> & gt; & gt; & gt; & gt;

>

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

before

>

> & gt; & gt; (sorry

>

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

over the

>

> & gt; & gt; last

>

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

ready for

>

> & gt; & gt; & gt; & gt; this?

>

> & gt; & gt; & gt; & gt;

>

> & gt; & gt; & gt; & gt; I saw my Dematologist Thursday and saw the results of

blood work

>

> & gt; & gt; that

>

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

false highs

>

> & gt; & gt; if

>

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

this is

>

> & gt; & gt; the

>

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

Anyone want

>

> & gt; & gt; to

>

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

because it

>

> & gt; & gt; & gt; & gt; belies the reports of other test results. Hmmm...Food for

thought-

>

> & gt; & gt; But

>

> & gt; & gt; & gt; & gt; X has DEFINATELY made a difference in my case. So much so

that I

>

> & gt; & gt; & gt; & gt; realized the other day I had actually made plans to attend

a

>

> & gt; & gt; family

>

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

years,

>

> & gt; & gt; because

>

> & gt; & gt; & gt; & gt; my chronic condition, and, not know when severe flares

would

>

> & gt; & gt; occur.

>

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

>

> & gt; & gt; & gt; & gt; Marie

>

> & gt; & gt; & gt; & gt;

>

> & gt; & gt; & gt;

>

> & gt; & gt;

>

> & gt; & gt;

>

> & gt;

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

I can't remember if I responded to your post or not but wanted to thank you and

everyone for you help.

20 years, yikes..I hope it resolves before this. She takes 10 to 40 mg of

aterax(well hydroxyzine)ususally 2 times a day and doxepin 30 mg before bed.

They don't seem to help the itching but make her sleepy. Believe it or not with

all those meds the itch wakes her up.

I didn't know that contact allergy wasn't IgE. I thought that was why her IgE

level was so high. It would be nice if doctors would explain things better.

I sat in for 2 days(Thurs. and Fri.)waiting for the dr return call. He called

me Sat. and I wasn't home.(I never expected Sat).I wanted to ask him about

xolair because my daughter has an appt. mon with her reg. allergist and I was

hopng if the two work together they could get something moving with our ins. co.

ok long post, I have to work on keeping them shorter, lol. Thanks again.

Jean

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

> 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

> > > > > > >

> > > > > >

> > > > >

> > > > >

> > > >

> > >

> > >

> > >

> >

>

>