Re: My Xolair Story For Chronic Urticaria (Chronic Hives) - Pls. tell me anyone else

[Guest guest]

WOW - thanks for sharing your Xolair story. I have TONS of IgE, so

my allergic skin reactions are not in the same " class " or what have

you as your urticaria, but my allergic skin issues have been

resolved by Xolair also.

I would call your specialty pharmacy and talk to someone in customer

relations and ask if they have anyone else who is receiving Xolair

for chronic hives. If they do, they would probably be willing to

approach that person on your behalf if you sign some kind of release

form. Another option would be to have your doc contact the local

Xolair rep and ask the same question. I would also make sure that

your doc has sent the info through the Genentech pipeline that you

are seeing relief thanks to Xolair.

Take care,

Addy

Group co-owner

*Remember to consult your own doc before making any changes in your

treatment plan

--- In , " Lior " <goquakers1978@...>

wrote:

>

> I came down with chronic autoimmune urticaria (chronic autoimmune

> related hives), that mysteriously appeared in March 2005. I

tackled

> this condition unsuccessfully for over a year; medication alone

was

> unable to control the rampant progression of hives and angiodema

> throughout my body. I tried various medication cocktails and went

to

> see specialists all over the country. Nothing worked, and nobody

> could help me until my doctor was able to get me approved for

> Xolair.

>

> The interesting part about my condition is that I have virtually

no

> free IgE levels in my blood. Autoimmune urticaria is essentially

a

> condition in which autoantibodies (IgG autoantibodies) bond to the

> high affinity receptor on IgE (FCepsilonRI). Xolair downregulates

> FCepsilonRI expression on basophils and mast cells. So, after a

few

> shots of Xolair, I stopped hiving. The reason for this is because

> the autoantibodies can no longer bind to the high affinity IgE

> receptors and release histamine. Not many people have tried

Xolair

> for chronic urticaria, but trust me, it worked for me when nothing

> else did - high dose Atarax, Zyrtec, Singulair, Doxepin, Accolate,

> Ketotifen, Terbutaline, Allegra, Claritin, and STEROIDS.

>

> However, since I started getting Xolair injections (300 mg every 2

> weeks), I get these acne-like marks that itch. They scab up and

> disappear after a few days. Has anyone else experienced this

while

> on Xolair?

>

> Also, I would truly love to speak with other chronic urticaria

> patients who tried Xolair. I am most particulaly interested in

> hearing from people who had extremely low free IgE in their

blood.

> I'm even more interested in hearing from people who tried Xolair

> successfully for chronic urticaria and stopped therapy. Once

therapy

> was stopped, did the hives come back? I know it will be hard to

> find someone with my condition and treatment regimen, but I am

> hopeful that others exist. It would be great to exchange

information.

>

[Guest guest]

No problem. It is my pleasure to share any information that could

possibly help people suffering from chronic urticaria.

My insurance is weird insofar as it is my doctor who gets me my

Xolair and submits the claim to the company. I do not use a

specialty pharmacy. However, I have asked my doctor to speak with

the Xolair rep about my condition. In fact, my doctor recently wrote

an article about my condition and treatment. It would probably be

smart to send that article to Genentech along with a letter.

Any news on other people with similar acne-like dots that itch and

then scab over?

Thanks for the help!!

> >

> > I came down with chronic autoimmune urticaria (chronic autoimmune

> > related hives), that mysteriously appeared in March 2005. I

> tackled

> > this condition unsuccessfully for over a year; medication alone

> was

> > unable to control the rampant progression of hives and angiodema

> > throughout my body. I tried various medication cocktails and

went

> to

> > see specialists all over the country. Nothing worked, and nobody

> > could help me until my doctor was able to get me approved for

> > Xolair.

> >

> > The interesting part about my condition is that I have virtually

> no

> > free IgE levels in my blood. Autoimmune urticaria is essentially

> a

> > condition in which autoantibodies (IgG autoantibodies) bond to

the

> > high affinity receptor on IgE (FCepsilonRI). Xolair

downregulates

> > FCepsilonRI expression on basophils and mast cells. So, after a

> few

> > shots of Xolair, I stopped hiving. The reason for this is

because

> > the autoantibodies can no longer bind to the high affinity IgE

> > receptors and release histamine. Not many people have tried

> Xolair

> > for chronic urticaria, but trust me, it worked for me when

nothing

> > else did - high dose Atarax, Zyrtec, Singulair, Doxepin,

Accolate,

> > Ketotifen, Terbutaline, Allegra, Claritin, and STEROIDS.

> >

> > However, since I started getting Xolair injections (300 mg every

2

> > weeks), I get these acne-like marks that itch. They scab up and

> > disappear after a few days. Has anyone else experienced this

> while

> > on Xolair?

> >

> > Also, I would truly love to speak with other chronic urticaria

> > patients who tried Xolair. I am most particulaly interested in

> > hearing from people who had extremely low free IgE in their

> blood.

> > I'm even more interested in hearing from people who tried Xolair

> > successfully for chronic urticaria and stopped therapy. Once

> therapy

> > was stopped, did the hives come back? I know it will be hard to

> > find someone with my condition and treatment regimen, but I am

> > hopeful that others exist. It would be great to exchange

> information.

> >

>