Re: xolair for atopic dermatitis

March 3, 2009

FWIW

I have/had severe atopic dermatitis since age 5, and am 44 now.

Xolair did absolutely nothing for that. I still had the weepy, nasty rashes.

Xolair didn't make it worse, but it didn't make the dermatitis any better.

Nan

" I love deadlines. I love the whooshing noise they make as they go by. "

~ ~

March 3, 2009

have you had her tested for foods? these are often the cause of AD--assuming

you have ruled out and discontinued things like scented personal products and

scented laundry detergents and dryer sheets.

there are at least 2 types of food testing lab tests--IGE mediated which test

for more immediate type reactions and then IGG which show delayed reactions.

Skin Testing once on Xolair is almost impossible. Have you tried eliminating

the basic foods to which people are often most sensitive--milk, wheat, corn,

eggs, shellfish, nuts, etc.?

________________________________

From: gigles_1955 <fgigles55@...>

Sent: Monday, March 2, 2009 9:56:23 PM

Subject: [ ] xolair for atopic dermatitis

Hi everyone. I have a question on xolair for allergic eczema(AD).

Some of you have helped me with this before but I have a couple

questions again.

quick background. My 17 year old daughter has severe AD, mild

persistant asthma at this time(has been bad in the past), and

allergic rhinitis(nose is always stuffy).

She has been on prednisone for the asthma and AD in the past and is

currently on again for her AD.

Traditional treatments haven't help her AD. Because of this they

have tried cyclosporin and cellcept. Now they are talking about

Rituxan( given by IV infusion. All off label drugs. i have brought

up the idea of xolair again(it was shot down in the past because her

IgE levels are high almost 6,000)

Now my questions.

How many of you on xolair has had their eczema or AD helped by being

on xoliar for your asthma? Do what degree has it helped? How many

times in a month do you go for shots, how many shots at one time and

what is your dosage?y daug my daughter weights 185 lbs(thanks in

part to meds) . How high is you Ige?

I am on xolair for my allergic asthma but because my IgE is low and

my asthma is mild persistant I am on the lowest dose and only go once

a month.

I was told once by my dd dr. that with her high IgE she would need

the max. dosage and therefore would be more apt to have a serious

reaction? Is this true.

please respond asap as I need to decide on either the xolair or

rituxan. I am trying to weigh all good and bad on both.

thank you so much for any help. jean

March 3, 2009

I don't know that it follows that your daughter is more apt to have a

serious reaction being on the highest dosage of Xolair. Yours is the

first time I've heard anyone say that. Doug and I both have taken the

max dose for 5+ years without anything happening.

My doctor's office has taken the following position on the black box

warning for anaphylactic shock as a possible side effect of Xolair:

Xolair is for the most severely allergic patients any doctor has.

Those of us taking it are likely to have an anaphylactic reaction to

just about ANYTHING, and a doctor has to evaluate each patient's

risk/benefit analysis for taking Xolair in light of that patient's

history and information known about Xolair at any given time.

There are plenty of patients with IgE much higher than the

" recommended " level taking Xolair - your daughter's doctor can contact

Genentech to discuss this if she/he hasn't already.

I would try going online to National Jewish Research Center. They

have a nurse line that ANYONE can call and try to get more

information. They do a lot with allergic patients and were one of the

trial centers for Xolair. You could ask how your doc can consult with

a doc there, and how many patients they've got with AD on Xolair, etc.

I can't imagine having to make this decision for my CHILD. Do all the

research you can on Rituxan. My suspicion is that it is no more/less

dangerous than Xolair. Certainly the long term effects of taking

prednisone can have just as serious potential consequences for a

patient than any other drug. I've been taking pred since 16 - now I'm

40 with very high BP and osteoporosis already, so I'm a little biased.

Addy

Group co-owner

>

> Hi everyone. I have a question on xolair for allergic eczema(AD).

> Some of you have helped me with this before but I have a couple

> questions again.

>

> quick background. My 17 year old daughter has severe AD, mild

> persistant asthma at this time(has been bad in the past), and

> allergic rhinitis(nose is always stuffy).

>

> She has been on prednisone for the asthma and AD in the past and is

> currently on again for her AD.

>

> Traditional treatments haven't help her AD. Because of this they

> have tried cyclosporin and cellcept. Now they are talking about

> Rituxan( given by IV infusion. All off label drugs. i have brought

> up the idea of xolair again(it was shot down in the past because her

> IgE levels are high almost 6,000)

>

> Now my questions.

> How many of you on xolair has had their eczema or AD helped by being

> on xoliar for your asthma? Do what degree has it helped? How many

> times in a month do you go for shots, how many shots at one time and

> what is your dosage?y daug my daughter weights 185 lbs(thanks in

> part to meds) . How high is you Ige?

>

> I am on xolair for my allergic asthma but because my IgE is low and

> my asthma is mild persistant I am on the lowest dose and only go once

> a month.

>

> I was told once by my dd dr. that with her high IgE she would need

> the max. dosage and therefore would be more apt to have a serious

> reaction? Is this true.

>

> please respond asap as I need to decide on either the xolair or

> rituxan. I am trying to weigh all good and bad on both.

>

> thank you so much for any help. jean

>

March 3, 2009

I wish Xolair worked for my Psoriasis. My dermatologist does not want

to put me on enbrel or one of those types of shot drugs because it

lowers my resistance to infection.

Doug

Your, itchy, scaley group founder

March 3, 2009

Hi Nan.

I'm sorry xolair didn't work for you. What regimen are you using

now? Has anything helped you?

My daughter has had it since 1 month old. She used to have the weepy

kind but now her skin is extremely itchy, red, dry, cracked. It still

gets weepy to some degree in the summer with the humidity.

She has a lot of allergies(skin, rhinitis, asthma) and this is why

they suggested the xolair.

I hope you have found something that helps with your AD. take

care jean

>

> I have/had severe atopic dermatitis since age 5, and am 44 now.

>

> Xolair did absolutely nothing for that. I still had the weepy, nasty

rashes.

>

> Xolair didn't make it worse, but it didn't make the dermatitis any

better.

>

> Nan

>

> " I love deadlines. I love the whooshing noise they make as they go

by. "

> ~ ~

>

March 3, 2009

She did hae allergy test for food when she was younger. Nothing

dramatic except for nuts. She had this tested again recently(nuts)

and tested positive for all nuts and tree nuts. Also high for dust,

and mold, trees, grasses, pollen, and low for pets.

She doesn't use any scented products, no perfume, no soap. laudry

detergent dye, perfume free, and no dryer sheets, etc.

She recently had an extensive skin patch test and tested to

bacatracin, nickel, colbalt, a couple groups of cortisones, and

phthalates. In an earlier patch tests she tested to thimerasol,

she has an appt. Monday withe her allergist so I will ask about

the 2 types of food testing.

thanks for all your help. jean

>

> have you had her tested for foods? these are often the cause of AD-

-assuming you have ruled out and discontinued things like scented

personal products and scented laundry detergents and dryer sheets.

> there are at least 2 types of food testing lab tests--IGE mediated

which test for more immediate type reactions and then IGG which show

delayed reactions. Skin Testing once on Xolair is almost

impossible. Have you tried eliminating the basic foods to which

people are often most sensitive--milk, wheat, corn, eggs, shellfish,

nuts, etc.?

>

> ________________________________

> From: gigles_1955 <fgigles55@...>

>

> Sent: Monday, March 2, 2009 9:56:23 PM

> Subject: [ ] xolair for atopic dermatitis

>

> Hi everyone. I have a question on xolair for allergic eczema(AD).

> Some of you have helped me with this before but I have a couple

> questions again.

>

> quick background. My 17 year old daughter has severe AD, mild

> persistant asthma at this time(has been bad in the past), and

> allergic rhinitis(nose is always stuffy).

>

> She has been on prednisone for the asthma and AD in the past and is

> currently on again for her AD.

>

> Traditional treatments haven't help her AD. Because of this they

> have tried cyclosporin and cellcept. Now they are talking about

> Rituxan( given by IV infusion. All off label drugs. i have

brought

> up the idea of xolair again(it was shot down in the past because

her

> IgE levels are high almost 6,000)

>

> Now my questions.

> How many of you on xolair has had their eczema or AD helped by

being

> on xoliar for your asthma? Do what degree has it helped? How many

> times in a month do you go for shots, how many shots at one time

and

> what is your dosage?y daug my daughter weights 185 lbs(thanks in

> part to meds) . How high is you Ige?

>

> I am on xolair for my allergic asthma but because my IgE is low and

> my asthma is mild persistant I am on the lowest dose and only go

once

> a month.

>

> I was told once by my dd dr. that with her high IgE she would need

> the max. dosage and therefore would be more apt to have a serious

> reaction? Is this true.

>

> please respond asap as I need to decide on either the xolair or

> rituxan. I am trying to weigh all good and bad on both.

>

> thank you so much for any help. jean

>

March 3, 2009

Thanks Addy, that makes me feel better. I don't know why her

allergist said this either. At first when I suggested xolair, over a

year ago my daughters allergist and derm. didn't seem too keen on the

idea. Her derm. has since changed his mind because he has tried

things that aren;t working and upon my suggestion read up on xolair

for AD. He than called my dd allergist who agrees it might help. She

has an appt. on Monday so I will see what he has to say now about the

severe reactions he had mentioned over a year ago.

I will also call the nurseline at National Jewish Center. They

have helped me before via emails.

I hate that I have to make this decision for my child. If it were

for me I wouldn't be having as hard a time. As far as the Rituxan

goes, mixed feelings. I like the idea of it because for her it will

be just two infusions as oppose to the xolair shots once or twice a

month. The thing that scares me is the IV infusions. For one my

daughter ended up in the ER last Thanksgiving for severe allergic

reactions(dont know to what). they gave her an iv and she seemed to

be having some sort of reaction to that. Her arm from the IV site up

to her shoulder got itchier than the rest of her and she said it felt

like someone sticking her with hot pins. the rest of her arm got icy

cold and her fingers started turning blue. The nurse said this was

normal but it never happened to anyone else I know with an IV.

Within half an hour after taking the IV out the sensation in her arm

stopped. Another thing that scares me is the warning of FATAL

INFUSION REACTIONS. My brother in law died within hours of having a

interferon IV infusion. I know it is a different med. but it is

still on my mind.

As for prednisone, I hate the stuff. She has been on it alot but

only once long term(Well only for a couple months but usually she is

on for 1 - 2 weeks).

Ok everyone has been very helpful. I really appreciate it. I will

keep you posted as to what we decide.

By the way, xolair has helped me. Take care. JEan

>

> I don't know that it follows that your daughter is more apt to have

a

> serious reaction being on the highest dosage of Xolair. Yours is

the

> first time I've heard anyone say that. Doug and I both have taken

the

> max dose for 5+ years without anything happening.

>

> My doctor's office has taken the following position on the black box

> warning for anaphylactic shock as a possible side effect of Xolair:

> Xolair is for the most severely allergic patients any doctor has.

> Those of us taking it are likely to have an anaphylactic reaction to

> just about ANYTHING, and a doctor has to evaluate each patient's

> risk/benefit analysis for taking Xolair in light of that patient's

> history and information known about Xolair at any given time.

>

> There are plenty of patients with IgE much higher than the

> " recommended " level taking Xolair - your daughter's doctor can

contact

> Genentech to discuss this if she/he hasn't already.

>

> I would try going online to National Jewish Research Center. They

> have a nurse line that ANYONE can call and try to get more

> information. They do a lot with allergic patients and were one of

the

> trial centers for Xolair. You could ask how your doc can consult

with

> a doc there, and how many patients they've got with AD on Xolair,

etc.

>

> I can't imagine having to make this decision for my CHILD. Do all

the

> research you can on Rituxan. My suspicion is that it is no

more/less

> dangerous than Xolair. Certainly the long term effects of taking

> prednisone can have just as serious potential consequences for a

> patient than any other drug. I've been taking pred since 16 - now

I'm

> 40 with very high BP and osteoporosis already, so I'm a little

biased.

>

> Addy

> Group co-owner

>

> --- In , " gigles_1955 " <fgigles55@>

wrote:

> >

> > Hi everyone. I have a question on xolair for allergic eczema

(AD).

> > Some of you have helped me with this before but I have a couple

> > questions again.

> >

> > quick background. My 17 year old daughter has severe AD, mild

> > persistant asthma at this time(has been bad in the past), and

> > allergic rhinitis(nose is always stuffy).

> >

> > She has been on prednisone for the asthma and AD in the past and

is

> > currently on again for her AD.

> >

> > Traditional treatments haven't help her AD. Because of this they

> > have tried cyclosporin and cellcept. Now they are talking about

> > Rituxan( given by IV infusion. All off label drugs. i have

brought

> > up the idea of xolair again(it was shot down in the past because

her

> > IgE levels are high almost 6,000)

> >

> > Now my questions.

> > How many of you on xolair has had their eczema or AD helped by

being

> > on xoliar for your asthma? Do what degree has it helped? How

many

> > times in a month do you go for shots, how many shots at one time

and

> > what is your dosage?y daug my daughter weights 185 lbs(thanks in

> > part to meds) . How high is you Ige?

> >

> > I am on xolair for my allergic asthma but because my IgE is low

and

> > my asthma is mild persistant I am on the lowest dose and only go

once

> > a month.

> >

> > I was told once by my dd dr. that with her high IgE she would

need

> > the max. dosage and therefore would be more apt to have a serious

> > reaction? Is this true.

> >

> > please respond asap as I need to decide on either the xolair or

> > rituxan. I am trying to weigh all good and bad on both.

> >

> > thank you so much for any help. jean

> >

>

March 3, 2009

Thanks Doug.

I wished it work for you too. Have you tried UVB light treatments?

When my daughter went for these, there were a lot of psoroasis patients

there getting them as well.

It is a tough call on the immunsupresants. They do lower your

resistence. While on the cyclosporin my daughter got a few upper resp.

infections. This is why they stopped it suddenly. While on the

cellcept she got herpes simplex(Like the cold sores virus) on her eye

lids twice. Still I think she would take these infections over the

extreme itching anyday. The itching is so relentless that she doesnt

have any life to speak of. she is taking aterax all the time and it

just makes her like a zombie.

well I hope you find something to ease your symptoms. take care and

thanks again. jean

>

> I wish Xolair worked for my Psoriasis. My dermatologist does not want

> to put me on enbrel or one of those types of shot drugs because it

> lowers my resistance to infection.

>

> Doug

> Your, itchy, scaley group founder

>

March 3, 2009

>

> Thanks Doug.

> I wished it work for you too. Have you tried UVB light treatments?

> When my daughter went for these, there were a lot of psoroasis patients

> there getting them as well.

>

> It is a tough call on the immunsupresants. They do lower your

> resistence. While on the cyclosporin my daughter got a few upper resp.

> infections. This is why they stopped it suddenly. While on the

> cellcept she got herpes simplex(Like the cold sores virus) on her eye

> lids twice. Still I think she would take these infections over the

> extreme itching anyday. The itching is so relentless that she doesnt

> have any life to speak of. she is taking aterax all the time and it

> just makes her like a zombie.

>

> well I hope you find something to ease your symptoms. take care and

> thanks again. jean

>

> >

> > I wish Xolair worked for my Psoriasis. My dermatologist does not want

> > to put me on enbrel or one of those types of shot drugs because it

> > lowers my resistance to infection.

> >

> > Doug

> > Your, itchy, scaley group founder

> >

>

I see my dermatologist again tomorrow. I will ask him about the light

and see what he says. I am on creams now but the psoriasis is all over.

Doug

March 3, 2009

Good luck Doug. I hope it works out for you. Let me know what your

derm. says. Jean

> I see my dermatologist again tomorrow. I will ask him about the light

> and see what he says. I am on creams now but the psoriasis is all

over.

>

> Doug

>

March 3, 2009

Dear ,

I have atopic dermititus like your daughter took cyclosporine and got herpes on

the eyelids etc. Now I am taking interferon gamma and I think it just might

work -I will let you know...

From: uca79iii <uca79iii@...>

Subject: [ ] Re: xolair for atopic dermatitis

Date: Tuesday, March 3, 2009, 4:02 PM

>

> Thanks Doug.

> I wished it work for you too. Have you tried UVB light treatments?

> When my daughter went for these, there were a lot of psoroasis patients

> there getting them as well.

>

> It is a tough call on the immunsupresants. They do lower your

> resistence. While on the cyclosporin my daughter got a few upper resp.

> infections. This is why they stopped it suddenly. While on the

> cellcept she got herpes simplex(Like the cold sores virus) on her eye

> lids twice. Still I think she would take these infections over the

> extreme itching anyday. The itching is so relentless that she doesnt

> have any life to speak of. she is taking aterax all the time and it

> just makes her like a zombie.

>

> well I hope you find something to ease your symptoms. take care and

> thanks again. jean

>

> >

> > I wish Xolair worked for my Psoriasis. My dermatologist does not want

> > to put me on enbrel or one of those types of shot drugs because it

> > lowers my resistance to infection.

> >

> > Doug

> > Your, itchy, scaley group founder

> >

>

I see my dermatologist again tomorrow. I will ask him about the light

and see what he says. I am on creams now but the psoriasis is all over.

Doug

March 4, 2009

well i learned something from you--i did not realize that a patch test for

steroids could be performed.

________________________________

From: gigles_1955 <fgigles55@...>

Sent: Tuesday, March 3, 2009 3:00:39 PM

Subject: [ ] Re: xolair for atopic dermatitis

She did hae allergy test for food when she was younger. Nothing

dramatic except for nuts. She had this tested again recently(nuts)

and tested positive for all nuts and tree nuts. Also high for dust,

and mold, trees, grasses, pollen, and low for pets.

She doesn't use any scented products, no perfume, no soap. laudry

detergent dye, perfume free, and no dryer sheets, etc.

She recently had an extensive skin patch test and tested to

bacatracin, nickel, colbalt, a couple groups of cortisones, and

phthalates. In an earlier patch tests she tested to thimerasol,

she has an appt. Monday withe her allergist so I will ask about

the 2 types of food testing.

thanks for all your help. jean

>

> have you had her tested for foods? these are often the cause of AD-

-assuming you have ruled out and discontinued things like scented

personal products and scented laundry detergents and dryer sheets.

> there are at least 2 types of food testing lab tests--IGE mediated

which test for more immediate type reactions and then IGG which show

delayed reactions. Skin Testing once on Xolair is almost

impossible. Have you tried eliminating the basic foods to which

people are often most sensitive--milk, wheat, corn, eggs, shellfish,

nuts, etc.?

>

> ____________ _________ _________ __

> From: gigles_1955 <fgigles55@. ..>

>

> Sent: Monday, March 2, 2009 9:56:23 PM

> Subject: [ ] xolair for atopic dermatitis

>

> Hi everyone. I have a question on xolair for allergic eczema(AD).

> Some of you have helped me with this before but I have a couple

> questions again.

>

> quick background. My 17 year old daughter has severe AD, mild

> persistant asthma at this time(has been bad in the past), and

> allergic rhinitis(nose is always stuffy).

>

> She has been on prednisone for the asthma and AD in the past and is

> currently on again for her AD.

>

> Traditional treatments haven't help her AD. Because of this they

> have tried cyclosporin and cellcept. Now they are talking about

> Rituxan( given by IV infusion. All off label drugs. i have

brought

> up the idea of xolair again(it was shot down in the past because

her

> IgE levels are high almost 6,000)

>

> Now my questions.

> How many of you on xolair has had their eczema or AD helped by

being

> on xoliar for your asthma? Do what degree has it helped? How many

> times in a month do you go for shots, how many shots at one time

and

> what is your dosage?y daug my daughter weights 185 lbs(thanks in

> part to meds) . How high is you Ige?

>

> I am on xolair for my allergic asthma but because my IgE is low and

> my asthma is mild persistant I am on the lowest dose and only go

once

> a month.

>

> I was told once by my dd dr. that with her high IgE she would need

> the max. dosage and therefore would be more apt to have a serious

> reaction? Is this true.

>

> please respond asap as I need to decide on either the xolair or

> rituxan. I am trying to weigh all good and bad on both.

>

> thank you so much for any help. jean

>

March 4, 2009

I have atopic dermatitus like your daughter and have experienced the same herpes

problems with cyclosporine. I am currently on Interferon gamma. I will let you

know how it goes.

Itchy in ct

From: uca79iii <uca79iiigmail (DOT) com>

Subject: [ ] Re: xolair for atopic dermatitis

Date: Tuesday, March 3, 2009, 4:02 PM

>

> Thanks Doug.

> I wished it work for you too. Have you tried UVB light treatments?

> When my daughter went for these, there were a lot of psoroasis patients

> there getting them as well.

>

> It is a tough call on the immunsupresants. They do lower your

> resistence. While on the cyclosporin my daughter got a few upper resp.

> infections. This is why they stopped it suddenly. While on the

> cellcept she got herpes simplex(Like the cold sores virus) on her eye

> lids twice. Still I think she would take these infections over the

> extreme itching anyday. The itching is so relentless that she doesnt

> have any life to speak of. she is taking aterax all the time and it

> just makes her like a zombie.

>

> well I hope you find something to ease your symptoms. take care and

> thanks again. jean

>

> >

> > I wish Xolair worked for my Psoriasis. My dermatologist does not want

> > to put me on enbrel or one of those types of shot drugs because it

> > lowers my resistance to infection.

> >

> > Doug

> > Your, itchy, scaley group founder

> >

>

I see my dermatologist again tomorrow. I will ask him about the light

and see what he says. I am on creams now but the psoriasis is all over.

Doug

March 4, 2009

i have eczema/atopic derm - i developed it within a few days of being born. in

my opinion, the xolair has helped the eczema, but not as much as i'd like or

hoped.

like your daughter, i have no idea what sets off my eczema. there are times i

can guess, but most often, its unknown. i know when the weather changes, it gets

worse. my skin was starting to flare wed, thurs i got my xolair, and by

saturday, the skin rash was close to gone. granted, i was still using the

prescribed ointment, but it my skin calmed down much faster than normal. thats

not to say my eczema is gone, but...better...maybe 30-40% better?

itching - i have found that the atarax, after a while, does nothing for the

itching, regardless of the dose. my dermo has me using doxepin once the atarax

doesn't work. (i usually switch it up every month or two). the other thing

suggested to me by my allergist was to put a small amount of bleach in the tub

with water and soak in that (essentially, making it like a clorinated pool). she

said that can help kill the bacteria and such. i tried it, no great results, but

passing it along.

prednisone makes my skin worse, believe it or not. the first few days on high

dose of pred gives me a quick fix for my skin, but once i start to decrease my

pred amount, i flare back - usually worse. the only thing that worked was some

kind of magic shot the dermo gave me prior to my wedding. i think it was

cortisone, which doesn't make sense as i've had a few cortisone shots since then

and i didn't get that kind of terrific result.

if i only had eczema and insurance was willing to cover the xolair, i'd give it

a try for a year. if i had to pay for xolair myself and only (in theory) had

eczema, i wouldn't think its worth the small excema-related benefit i see. (i.e.

i don't think my eczema is $3000 a month better)

since you asked, i'm on xolar, 375mg every 2 weeks, for five years now.

heather

>

> Hi everyone. I have a question on xolair for allergic eczema(AD).

> Some of you have helped me with this before but I have a couple

> questions again.

>

> quick background. My 17 year old daughter has severe AD, mild

> persistant asthma at this time(has been bad in the past), and

> allergic rhinitis(nose is always stuffy).

>

> She has been on prednisone for the asthma and AD in the past and is

> currently on again for her AD.

>

> Traditional treatments haven't help her AD. Because of this they

> have tried cyclosporin and cellcept. Now they are talking about

> Rituxan( given by IV infusion. All off label drugs. i have brought

> up the idea of xolair again(it was shot down in the past because her

> IgE levels are high almost 6,000)

>

> Now my questions.

> How many of you on xolair has had their eczema or AD helped by being

> on xoliar for your asthma? Do what degree has it helped? How many

> times in a month do you go for shots, how many shots at one time and

> what is your dosage?y daug my daughter weights 185 lbs(thanks in

> part to meds) . How high is you Ige?

>

> I am on xolair for my allergic asthma but because my IgE is low and

> my asthma is mild persistant I am on the lowest dose and only go once

> a month.

>

> I was told once by my dd dr. that with her high IgE she would need

> the max. dosage and therefore would be more apt to have a serious

> reaction? Is this true.

>

> please respond asap as I need to decide on either the xolair or

> rituxan. I am trying to weigh all good and bad on both.

>

> thank you so much for any help. jean

>

March 4, 2009

>

> prednisone makes my skin worse>

Me too. I wonder why, pred is supposed to reduce inflammation not make it worse?

March 4, 2009

thanks . I hope it works for you. How long have you been on it? Jean

>

> Dear ,

> I have atopic dermititus like your daughter took cyclosporine and got herpes

on the eyelids etc. Now I am taking interferon gamma and I think it just might

work -I will let you know...

>

> From: uca79iii <uca79iii@...>

> Subject: [ ] Re: xolair for atopic dermatitis

>

> Date: Tuesday, March 3, 2009, 4:02 PM

>

> >

>

> > Thanks Doug.

>

> > I wished it work for you too. Have you tried UVB light treatments?

>

> > When my daughter went for these, there were a lot of psoroasis patients

>

> > there getting them as well.

>

> >

>

> > It is a tough call on the immunsupresants. They do lower your

>

> > resistence. While on the cyclosporin my daughter got a few upper resp.

>

> > infections. This is why they stopped it suddenly. While on the

>

> > cellcept she got herpes simplex(Like the cold sores virus) on her eye

>

> > lids twice. Still I think she would take these infections over the

>

> > extreme itching anyday. The itching is so relentless that she doesnt

>

> > have any life to speak of. she is taking aterax all the time and it

>

> > just makes her like a zombie.

>

> >

>

> > well I hope you find something to ease your symptoms. take care and

>

> > thanks again. jean

>

> >

>

> >

>

> > >

>

> > > I wish Xolair worked for my Psoriasis. My dermatologist does not want

>

> > > to put me on enbrel or one of those types of shot drugs because it

>

> > > lowers my resistance to infection.

>

> > >

>

> > > Doug

>

> > > Your, itchy, scaley group founder

>

> > >

>

> >

>

> I see my dermatologist again tomorrow. I will ask him about the light

>

> and see what he says. I am on creams now but the psoriasis is all over.

>

> Doug

>

March 4, 2009

The first patch test she had she test for tixcortol-21-pivalate(group A) and the

2nd test she tested positive for something butyrate(cant remember the first part

of the name but it is in group D of the cordisones), My dd and I always

suspected she was allergic to some cordisones because she got worse after using

them. Jean

> well i learned something from you--i did not realize that a patch test for

steroids could be performed.

>

March 4, 2009

my thinking as to why prednisone could worsen anything especially in the long

run is that it suppresses the immune system and your lymphocyte counts.

as such, opportunistic bugs, infections, etc. can set it. for example,

candida.

________________________________

From: uca79iii <uca79iii@...>

Sent: Tuesday, March 3, 2009 7:23:22 PM

Subject: [ ] Re: xolair for atopic dermatitis

>

> prednisone makes my skin worse>

Me too. I wonder why, pred is supposed to reduce inflammation not make it worse?

March 4, 2009

Thanks for all the information. Your AD sounds a lot like my daughters.

the xolair sounds promising,,,I'd take 30-40 % at this point. Did it help the

itching this much or just the rash and red skin? My daughters skin is extremely

itchy even when her skin inst broke out, although her skin is always red. the

ointments dont really help her,,she is allergic to two different groups of the

topicals and ones in the other groups dont seem to help. She reacts the same to

prednisone as you. it helps at first but she rebounds when she goes off. I am

hoping whatever we decide to use will kick in before the rebound happens, but

that will mean keeping her on prednisone longer than I want to.

The aterax doesn't really help with the itching, it just makes her really

tired and helps her sleep. She alternates between that and benadryl every month

or so, Doxepin didn't help her. We haven't tried the bleach baths but I have

read about them helping with staph infections, something to considered.

>

My daughter is covered under our ins. for one more year so if we are going to

try it this would be the time. If it helps a great deal we will have to figure

on how to pay it after her coverage starts.

just a couple more questions if you dont mind.

What was your IgE level when you started? did you have any side effects when

started xolair(or after)?

thank you for all your help. jean

March 4, 2009

could it be a possible allergic reaction? jean

>

> >

> > prednisone makes my skin worse>

>

> Me too. I wonder why, pred is supposed to reduce inflammation not make it

worse?

>

March 4, 2009

you are doing all that you can do.

________________________________

From: gigles_1955 <fgigles55@...>

Sent: Tuesday, March 3, 2009 3:00:39 PM

Subject: [ ] Re: xolair for atopic dermatitis

She did hae allergy test for food when she was younger. Nothing

dramatic except for nuts. She had this tested again recently(nuts)

and tested positive for all nuts and tree nuts. Also high for dust,

and mold, trees, grasses, pollen, and low for pets.

She doesn't use any scented products, no perfume, no soap. laudry

detergent dye, perfume free, and no dryer sheets, etc.

She recently had an extensive skin patch test and tested to

bacatracin, nickel, colbalt, a couple groups of cortisones, and

phthalates. In an earlier patch tests she tested to thimerasol,

she has an appt. Monday withe her allergist so I will ask about

the 2 types of food testing.

thanks for all your help. jean

>

> have you had her tested for foods? these are often the cause of AD-

-assuming you have ruled out and discontinued things like scented

personal products and scented laundry detergents and dryer sheets.

> there are at least 2 types of food testing lab tests--IGE mediated

which test for more immediate type reactions and then IGG which show

delayed reactions. Skin Testing once on Xolair is almost

impossible. Have you tried eliminating the basic foods to which

people are often most sensitive--milk, wheat, corn, eggs, shellfish,

nuts, etc.?

>

> ____________ _________ _________ __

> From: gigles_1955 <fgigles55@. ..>

>

> Sent: Monday, March 2, 2009 9:56:23 PM

> Subject: [ ] xolair for atopic dermatitis

>

> Hi everyone. I have a question on xolair for allergic eczema(AD).

> Some of you have helped me with this before but I have a couple

> questions again.

>

> quick background. My 17 year old daughter has severe AD, mild

> persistant asthma at this time(has been bad in the past), and

> allergic rhinitis(nose is always stuffy).

>

> She has been on prednisone for the asthma and AD in the past and is

> currently on again for her AD.

>

> Traditional treatments haven't help her AD. Because of this they

> have tried cyclosporin and cellcept. Now they are talking about

> Rituxan( given by IV infusion. All off label drugs. i have

brought

> up the idea of xolair again(it was shot down in the past because

her

> IgE levels are high almost 6,000)

>

> Now my questions.

> How many of you on xolair has had their eczema or AD helped by

being

> on xoliar for your asthma? Do what degree has it helped? How many

> times in a month do you go for shots, how many shots at one time

and

> what is your dosage?y daug my daughter weights 185 lbs(thanks in

> part to meds) . How high is you Ige?

>

> I am on xolair for my allergic asthma but because my IgE is low and

> my asthma is mild persistant I am on the lowest dose and only go

once

> a month.

>

> I was told once by my dd dr. that with her high IgE she would need

> the max. dosage and therefore would be more apt to have a serious

> reaction? Is this true.

>

> please respond asap as I need to decide on either the xolair or

> rituxan. I am trying to weigh all good and bad on both.

>

> thank you so much for any help. jean

>

March 4, 2009

i too itch pretty much everywhere. not all the time, but i think also at a point

you get used to a baseline amount of itching that you can just ignore. its when

it gets worse that you go crazy.

my dermo also gave me samples of pramosone. in theory its supposed to help with

the itch. it didn't work for me, but maybe you can get some samples and try???

the other thing my dr does is prescribe cordran tape. its a tape that has the

topical steroids in it. somehow, once i put it over an area, i'm pretty much

itch free in that spot. i'm not sure if its b/c the air isn't gettign to it or

what. you'd have to check to make sure the steroids in it isn't one your

daughter is sensitive to, but its another option maybe.

another thought (just throwing it out there for you). my dr started me and her

RN (her RN also has eczema, although not as bad as i do) on lactabacillus (you

can get it under the name of culterelle, my pharmacy ordered it, but some stores

carry it. target also has an immunity pill with lactabacillus in it, but its

much less than the culturelle). my dr read somewhere that lactacabillus (a

probiotic) helps eczema. i see some improvement in my skin, and the RN at my dr

also sees a huge improvement in her eczema on her hands. we both take one

culterlle pill twice a day. my dr also has me take one maitake mushroom pill

(found at natural food stores, i get it at wild by nature) but i think thats

more for the immune system than eczema.

my pre-xolair ige was 760-something, which technically is out of the protocol

limits of xolair. i take the highest dose. i've had no side effects (unless you

count b etter breathing)

hope this helps!

heather

>

> Thanks for all the information. Your AD sounds a lot like my daughters.

> the xolair sounds promising,,,I'd take 30-40 % at this point. Did it help

the itching this much or just the rash and red skin? My daughters skin is

extremely itchy even when her skin inst broke out, although her skin is always

red. the ointments dont really help her,,she is allergic to two different

groups of the topicals and ones in the other groups dont seem to help. She

reacts the same to prednisone as you. it helps at first but she rebounds when

she goes off. I am hoping whatever we decide to use will kick in before the

rebound happens, but that will mean keeping her on prednisone longer than I want

to.

>

> The aterax doesn't really help with the itching, it just makes her really

tired and helps her sleep. She alternates between that and benadryl every month

or so, Doxepin didn't help her. We haven't tried the bleach baths but I have

read about them helping with staph infections, something to considered.

> >

> My daughter is covered under our ins. for one more year so if we are going

to try it this would be the time. If it helps a great deal we will have to

figure on how to pay it after her coverage starts.

>

> just a couple more questions if you dont mind.

>

> What was your IgE level when you started? did you have any side effects when

started xolair(or after)?

>

> thank you for all your help. jean

>

March 4, 2009

thank you. I know I am but sometimes it just doesnt feel like it. jean

>

> you are doing all that you can do.

>

> ________________________________

> From: gigles_1955 <fgigles55@...>

>

> Sent: Tuesday, March 3, 2009 3:00:39 PM

> Subject: [ ] Re: xolair for atopic dermatitis

>

> She did hae allergy test for food when she was younger. Nothing

> dramatic except for nuts. She had this tested again recently(nuts)

> and tested positive for all nuts and tree nuts. Also high for dust,

> and mold, trees, grasses, pollen, and low for pets.

> She doesn't use any scented products, no perfume, no soap. laudry

> detergent dye, perfume free, and no dryer sheets, etc.

> She recently had an extensive skin patch test and tested to

> bacatracin, nickel, colbalt, a couple groups of cortisones, and

> phthalates. In an earlier patch tests she tested to thimerasol,

> she has an appt. Monday withe her allergist so I will ask about

> the 2 types of food testing.

> thanks for all your help. jean

>

> >

> > have you had her tested for foods? these are often the cause of AD-

> -assuming you have ruled out and discontinued things like scented

> personal products and scented laundry detergents and dryer sheets.

> > there are at least 2 types of food testing lab tests--IGE mediated

> which test for more immediate type reactions and then IGG which show

> delayed reactions. Skin Testing once on Xolair is almost

> impossible. Have you tried eliminating the basic foods to which

> people are often most sensitive--milk, wheat, corn, eggs, shellfish,

> nuts, etc.?

> >

> > ____________ _________ _________ __

> > From: gigles_1955 <fgigles55@ ..>

> >

> > Sent: Monday, March 2, 2009 9:56:23 PM

> > Subject: [ ] xolair for atopic dermatitis

> >

>

> >

> > Hi everyone. I have a question on xolair for allergic eczema(AD).

> > Some of you have helped me with this before but I have a couple

> > questions again.

> >

> > quick background. My 17 year old daughter has severe AD, mild

> > persistant asthma at this time(has been bad in the past), and

> > allergic rhinitis(nose is always stuffy).

> >

> > She has been on prednisone for the asthma and AD in the past and is

> > currently on again for her AD.

> >

> > Traditional treatments haven't help her AD. Because of this they

> > have tried cyclosporin and cellcept. Now they are talking about

> > Rituxan( given by IV infusion. All off label drugs. i have

> brought

> > up the idea of xolair again(it was shot down in the past because

> her

> > IgE levels are high almost 6,000)

> >

> > Now my questions.

> > How many of you on xolair has had their eczema or AD helped by

> being

> > on xoliar for your asthma? Do what degree has it helped? How many

> > times in a month do you go for shots, how many shots at one time

> and

> > what is your dosage?y daug my daughter weights 185 lbs(thanks in

> > part to meds) . How high is you Ige?

> >

> > I am on xolair for my allergic asthma but because my IgE is low and

> > my asthma is mild persistant I am on the lowest dose and only go

> once

> > a month.

> >

> > I was told once by my dd dr. that with her high IgE she would need

> > the max. dosage and therefore would be more apt to have a serious

> > reaction? Is this true.

> >

> > please respond asap as I need to decide on either the xolair or

> > rituxan. I am trying to weigh all good and bad on both.

> >

> > thank you so much for any help. jean

> >

March 4, 2009

Thanks . I'll take any information i can get. I will ask her doctor

about that tape and the other things you mentioned. I have read about the

probotics, although I haven't tried it yet.

She itchies 24/7 and at times(seems like more times than not) the itch is pretty

intense. She has dermagraphism(hives) and I'm not sure if this is causing more

of the itch or the AD is(I guess both). I wonder sometimes if it is some type

of posible disease other than AD that is causing the itching. With all her

doctors they all want to treat the symptoms but I don't see where they are

looking for causes. I know she has AD and I know that causes the rash and itch,

etc., but the itch is extreme, with or without a rash. This has increased in

the past 3 + years. I know I am just looking for a reason when there might not

be one but is it posible?

So frustrating

Have you ever tried ice or a cold cloth for the itching? It does help if it is

a small area.

Also 's derm. at NYU suggested to wrap the area you put the cordisone

with a wet cloth so that it is absorbed in the skin more. I would ck. with your

own doctor on this one though to make sure it is ok.

well, thanks again. keep the suggestions coming. hae a good day. jean

>

> i too itch pretty much everywhere. not all the time, but i think also at a

point you get used to a baseline amount of itching that you can just ignore. its

when it gets worse that you go crazy.

> my dermo also gave me samples of pramosone. in theory its supposed to help

with the itch. it didn't work for me, but maybe you can get some samples and

try??? the other thing my dr does is prescribe cordran tape. its a tape that has

the topical steroids in it. somehow, once i put it over an area, i'm pretty much

itch free in that spot. i'm not sure if its b/c the air isn't gettign to it or

what. you'd have to check to make sure the steroids in it isn't one your

daughter is sensitive to, but its another option maybe.

>

> another thought (just throwing it out there for you). my dr started me and her