Re: XOLAIR & other illnesses

[Guest guest]

Wow!!

I can't get over your high IgE levels. Do you also

have Allergic Bronchopulmonary Aspergillosis (ABPA)??

This may is why your IgE levels are so elevated. What

about your IgG levels?! Has your doctor done a

aspergillus-specific IgE RAST test. It is my

understanding that is different than just a plain old

IgE test.

I have heard of people with Cystic Fibrosis AND

moderate Asthma having great success with Xolair.

however I DO NOT know what the IgE levels of those

patients are. I do know a few Doctors and a Nurse who

are part of the Xolair Speaker Program and are in

practices that are participating in more research

studies. One of those doctors has two CF patients. I

will try my best to get a hold of her and ask her whet

her thoughts are on your unfortunate situation!

Kathe

--- marieruffolo <marieruffolo@...> wrote:

> Does anyone know if and when XOLAIR will be approved

> for other illnesses

> such as recalcitrant / severe atopic dermatitis? Any

> clinical trials

> happening? I've read it has helped people with this

> stubborn and life-

> altering disease. I am miserable with severe,

> itching and pain. Plus,

> it's disfiguring to my face and body during a flair.

> None of my doctors

> will prescribe it for me because my IgE is too high

> and does not

> qualify (ranges from 10,000 - 45,000). (I also have

> moderate asthma).

> I've been on all kinds of immunosuppressants for the

> skin for 8 years,

> plus the evil candy. I had my right hip replaced two

> years ago and am

> scheduling the left hip replacement for this

> October. I, too, live a

> reclusive life because of its severity. Any info (or

> hope) would be

> helpful. Thank you!

> Marie

>

>

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[Guest guest]

Have you had an infectious disease or immunology

consult? It would suggest something other than allergy

is going on (eg aspergillis infection) as suggested.

I have no idea re: other diseases but I am betting

awhile. Perhaps try calling novartis/genetech to see

if they have clinical trials going.

C

Ask a question on any topic and get answers from real people. Go to

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[Guest guest]

That high an IgE level could also be at least partly due to a

parasitic infection, e.g. intestinal worms. Would bring it up with

your primary.

Fran

>

> Have you had an infectious disease or immunology

> consult? It would suggest something other than allergy

> is going on (eg aspergillis infection) as suggested.

>

> I have no idea re: other diseases but I am betting

> awhile. Perhaps try calling novartis/genetech to see

> if they have clinical trials going.

>

> C

>

>

> Ask a question on any topic and get answers from real

people. Go to Answers and share what you know at

http://ca.answers.

>

[Guest guest]

>

> Have you had an infectious disease or immunology

> consult? It would suggest something other than allergy

> is going on (eg aspergillis infection) as suggested.

>

> I have no idea re: other diseases but I am betting

> awhile. Perhaps try calling novartis/genetech to see

> if they have clinical trials going.

>

> C

>

>

> Ask a question on any topic and get answers from real people.

Go to Answers and share what you know at

http://ca.answers.

>

Thank you all for your concern and helpful comments. As for APBA, my

chest x-rays thus far have been normal, I have no fever, nor a cough

that brings up anything of concern. As far as my IgG, I've had an

immunofixation test and everything was normal. I have been seen by

dermatologists, allergists, and cancer speicalists, since I also have

high eosinophil levels.

It's interesting that it's so difficult to find an immunologist, not

allergist/immuologist. I have not seen an infectious disease doctor

yet, but my allergist has a collegue that is an immunologist /

dermatologist. I will be seeing the allergist next week and hopefully

he has a contact name for me. I live 12 miles from Manhattan, so all

my doctors are in New York, but they do admit this IgE is a record-

breaker.

I've tried in the past for a clinical trial at the NIH using Xolair

to treat Job's disease, but they said I did not qualify because I

didn't have the other characteristics consistant with Jobs.

Soooo, I, just like many here, take each day one-at-a-time:-)

Marie

[Guest guest]

thanks for the direction on where to go with medicare.

Now I'm wondering... those who have had good results

from Xolair - was your asthma allergic or intrinsic (I

think that is the word). I've had a couple of series

of allergy tests and there really isn't much I can be

desensitized against, low readings on mold, mites, and

beech trees of all things. My asthma is triggered by

environmental, climate, stress and physical

exertion... I'd like to hear from people who don't

have allergies and pets if xolair has made a huge

difference in their lives or just brought a little

more relief.

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[Guest guest]

Xolair is " indicated " (appropriately used) only for allergic asthma,

since it is an antibody that inactivates IgE, the class of antibody

that triggers allergic reactions. Xolair would not be expected to

ease symptoms of asthma due to non-allergy related causes. Many

folks have a mixed basis for their asthma, both allergic and not,

and the Xolair would be expected to help only with the allergic

portion. That's one explanation of why some individuals have only a

modest response or no response at all to Xolair.

Unfortunately, it does sound like you may not have an allergic

component to your asthma that could be treated with Xolair. But your

allergist should sort that out for you. For example, you might not

have any identifiable allergens by routine testing but still have an

elevated total IgE level suggesting the presence of some

unidentified allergies. In that case, you might still be eligible

for a trial of Xolair. Allergy testing can be extremely helpful but

it doesn't always domonstrate the presence of allergies even though

they might be present. Best of luck to you,

Fran

>

> thanks for the direction on where to go with medicare.

> Now I'm wondering... those who have had good results

> from Xolair - was your asthma allergic or intrinsic (I

> think that is the word). I've had a couple of series

> of allergy tests and there really isn't much I can be

> desensitized against, low readings on mold, mites, and

> beech trees of all things. My asthma is triggered by

> environmental, climate, stress and physical

> exertion... I'd like to hear from people who don't

> have allergies and pets if xolair has made a huge

> difference in their lives or just brought a little

> more relief.

>

>

>

>

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