Re: xolair study and off label use

[Guest guest]

At this point it sounds like you need to talk with a doctor who is actively

prescribing Xolair for patients with skin conditions. I would ask your

daughter's physicians for the contact information for the local Genentech rep,

who should be able, through his/her network, to put you in touch with such a

physician.

Addy

Group co-owner

>

> Hi everyone.

>

> I know this recent report has some of us scared and I understand why most of

you are continuing on with xolair because it has given you your life back and

their isn't an alternative. Reading these post I can see where it has helped so

many here.

>

> My concern is my 18 yr old daughter is on it off label for atopic dermatitis

and hives that cause her skin to be broke out daily and extremely itchy 24/7.

This disease has robbed her of a normal life. Other treatments have not helped

her and why she is trying xolair. She has been receiving 3 shots every two

weeks and it will be just 3 months this Friday. There has been no change at all

in her skin, in fact it is worse, but I don't think this is because of xolair,

and also there is no change in her moderate asthma(even though she has moderate

asthma she was put on xolair mainly for her skin) I know it takes time to work

but I don't know based on this study, if it is worth it to cont. for an off

label use That has no facts to back it up.

>

> I know this has to be my daughter and my decision but I am asking your opinion

especially those who have mentioned that while on xolair an added benefit was it

helped you skin as well. Do you think based on this latest study that it is

wise to continue doing xolair shots for off label reasons. Thanks for

listening. Jean

>

[Guest guest]

thanks Addy. Jean

On Tue, Jul 21, 2009 at 5:59 AM, pyle456 <jamcculloch2@...> wrote:

>

>

>

>

> At this point it sounds like you need to talk with a doctor who is actively

> prescribing Xolair for patients with skin conditions. I would ask your

> daughter's physicians for the contact information for the local Genentech

> rep, who should be able, through his/her network, to put you in touch with

> such a physician.

>

> Addy

> Group co-owner

>

>

> >

> > Hi everyone.

> >

> > I know this recent report has some of us scared and I understand why most

> of you are continuing on with xolair because it has given you your life back

> and their isn't an alternative. Reading these post I can see where it has

> helped so many here.

> >

> > My concern is my 18 yr old daughter is on it off label for atopic

> dermatitis and hives that cause her skin to be broke out daily and extremely

> itchy 24/7. This disease has robbed her of a normal life. Other treatments

> have not helped her and why she is trying xolair. She has been receiving 3

> shots every two weeks and it will be just 3 months this Friday. There has

> been no change at all in her skin, in fact it is worse, but I don't think

> this is because of xolair, and also there is no change in her moderate

> asthma(even though she has moderate asthma she was put on xolair mainly for

> her skin) I know it takes time to work but I don't know based on this study,

> if it is worth it to cont. for an off label use That has no facts to back it

> up.

> >

> > I know this has to be my daughter and my decision but I am asking your

> opinion especially those who have mentioned that while on xolair an added

> benefit was it helped you skin as well. Do you think based on this latest

> study that it is wise to continue doing xolair shots for off label reasons.

> Thanks for listening. Jean

> >

>

>

>

[Guest guest]

FWIW, I have had severe atopic dermatitis. Xolair didn't to squat for that OR

my food allergies OR my idiopathic anaphylaxis.

BUT for about 2 years, a good 3 weeks after the each monthly shot, it seemed to

help my allergies (environmental/seasonal) and asthma. Then it decided to punk

out on me.

I was on the minimum monthly dose. My allergist refused to increase it due to my

IGE was only 100. So, who knows what results I would have gotten if it had been

increased to twice a month etc.

My allergist didn't have a whole lot of experience with Xolair. Looking back,

maybe another doctor would have been more willing to tinker with the dose.

Nan

Sent from my Verizon Wireless BlackBerry

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

From: " pyle456 " <jamcculloch2@...>

Date: Tue, 21 Jul 2009 09:59:53

< >

Subject: [ ] Re: xolair study and off label use

At this point it sounds like you need to talk with a doctor who is actively

prescribing Xolair for patients with skin conditions. I would ask your

daughter's physicians for the contact information for the local Genentech rep,

who should be able, through his/her network, to put you in touch with such a

physician.

Addy

Group co-owner

>

> Hi everyone.

>

> I know this recent report has some of us scared and I understand why most of

you are continuing on with xolair because it has given you your life back and

their isn't an alternative. Reading these post I can see where it has helped so

many here.

>

> My concern is my 18 yr old daughter is on it off label for atopic dermatitis

and hives that cause her skin to be broke out daily and extremely itchy 24/7.

This disease has robbed her of a normal life. Other treatments have not helped

her and why she is trying xolair. She has been receiving 3 shots every two

weeks and it will be just 3 months this Friday. There has been no change at all

in her skin, in fact it is worse, but I don't think this is because of xolair,

and also there is no change in her moderate asthma(even though she has moderate

asthma she was put on xolair mainly for her skin) I know it takes time to work

but I don't know based on this study, if it is worth it to cont. for an off

label use That has no facts to back it up.

>

> I know this has to be my daughter and my decision but I am asking your opinion

especially those who have mentioned that while on xolair an added benefit was it

helped you skin as well. Do you think based on this latest study that it is

wise to continue doing xolair shots for off label reasons. Thanks for

listening. Jean

>

[Guest guest]

Everyone has to weigh the benefits vs risks for themself. For your daughter,

has she tried everything possible including diet and environment changes? I had

severe hives prior to eliminating gluten, dairy, corn, soy and many others from

my diet.

For me, I'm losing memory. I suspected xolair after a shot 6wks ago when the

next day the symptoms began. I didn't have the normal " feeling " I usually had

after the xolair shot and wondered if they mixed it correctly. Then the next

day it began. I slowly got better until the day after my next shot. This has

happened with the last 3 shots. But my symptoms were not listed as a side effect

of xolair so I thought it was coincidence.

I now suspect xolair could be elevating the brain (intracranial) pressure, I've

had ICP problems since my brain surgery 8 years ago.

I'm an accountant and need excellent memory.

Due to the new data, I've decided to risk increased asthma and quit xolair.

Keli

>

> Hi everyone.

>

> I know this recent report has some of us scared and I understand why most of

you are continuing on with xolair because it has given you your life back and

their isn't an alternative. Reading these post I can see where it has helped so

many here.

>

> My concern is my 18 yr old daughter is on it off label for atopic dermatitis

and hives that cause her skin to be broke out daily and extremely itchy 24/7.

This disease has robbed her of a normal life. Other treatments have not helped

her and why she is trying xolair. She has been receiving 3 shots every two

weeks and it will be just 3 months this Friday. There has been no change at all

in her skin, in fact it is worse, but I don't think this is because of xolair,

and also there is no change in her moderate asthma(even though she has moderate

asthma she was put on xolair mainly for her skin) I know it takes time to work

but I don't know based on this study, if it is worth it to cont. for an off

label use That has no facts to back it up.

>

> I know this has to be my daughter and my decision but I am asking your opinion

especially those who have mentioned that while on xolair an added benefit was it

helped you skin as well. Do you think based on this latest study that it is

wise to continue doing xolair shots for off label reasons. Thanks for

listening. Jean

>

[Guest guest]

me personally, it took 6-9 months before i saw any difference, breathing or

skin. after a year, i'd say i was at my max benefit.

can i tell you if it will work for her? will she have side effects? i really

wish i knew some answers. i know you're not expecting for cut and dry answers,

but as we all know, there are none. just guesses.

speak to the prescribing dr and see what s/he thinks. how involved is your

daughter in her medical decisions? what are her thoughts?

BTW - found a new help for itching. malox. go figure. rub it on your skin, no

itching all night long (i know i'm not scratching b/c my fingernails are clean

in the morning!! although that is kind of gross way to measure). i'm not sure

why it works. maybe it puts a sealant on your skin, no air = no itching?

(although i've tried calamine and that ddn't help)

heather

>

> Hi everyone.

>

> I know this recent report has some of us scared and I understand why most of

you are continuing on with xolair because it has given you your life back and

their isn't an alternative. Reading these post I can see where it has helped so

many here.

>

> My concern is my 18 yr old daughter is on it off label for atopic dermatitis

and hives that cause her skin to be broke out daily and extremely itchy 24/7.

This disease has robbed her of a normal life. Other treatments have not helped

her and why she is trying xolair. She has been receiving 3 shots every two

weeks and it will be just 3 months this Friday. There has been no change at all

in her skin, in fact it is worse, but I don't think this is because of xolair,

and also there is no change in her moderate asthma(even though she has moderate

asthma she was put on xolair mainly for her skin) I know it takes time to work

but I don't know based on this study, if it is worth it to cont. for an off

label use That has no facts to back it up.

>

> I know this has to be my daughter and my decision but I am asking your opinion

especially those who have mentioned that while on xolair an added benefit was it

helped you skin as well. Do you think based on this latest study that it is

wise to continue doing xolair shots for off label reasons. Thanks for

listening. Jean

>