Re: severe allergic disease chat?

[Guest guest]

i'm in!! just lemme know when. i wouldn't work too much around my schedule

since right now, i'm in class three nights a week (i know - you're all

jealous!!) plus my regular day job....

but yup - my sinuses are about the same as yours...no fungal infection, just

inflamed and funky!!

heather

pyle456 <coachmac@...> wrote:

I know at least a handful of us suffer from what I call severe allergic

sinus disease - chronic inflammation and recurrent sinus infections

which repeatedly show up as normal under CT scans and xrays, meaning no

fungus, contrary to the Mayo clinic announcement that most recurrent

sinusitis is fungal.

I would be interested in having a chat about this. Anyone else? We

could agree on a day and time in advance.

Addy

Group co-owner

[Guest guest]

if you read the xolair literature it says some patients have increased sinusitis

while on it.

heather <heaven1975@...> wrote: i'm in!!

just lemme know when. i wouldn't work too much around my schedule since right

now, i'm in class three nights a week (i know - you're all jealous!!) plus my

regular day job....

but yup - my sinuses are about the same as yours...no fungal infection, just

inflamed and funky!!

heather

pyle456 <coachmac@...> wrote:

I know at least a handful of us suffer from what I call severe allergic

sinus disease - chronic inflammation and recurrent sinus infections

which repeatedly show up as normal under CT scans and xrays, meaning no

fungus, contrary to the Mayo clinic announcement that most recurrent

sinusitis is fungal.

I would be interested in having a chat about this. Anyone else? We

could agree on a day and time in advance.

Addy

Group co-owner

[Guest guest]

Reminder, they have to report all illnesses that patients experience

during the clinical trials, regardless of cause.

For me, personally, since starting Xolair I've gone from an average

of 9 sinus infections a year to an average of 3.

Addy

Group co-owner

> I know at least a handful of us suffer from what I call severe

allergic

> sinus disease - chronic inflammation and recurrent sinus

infections

> which repeatedly show up as normal under CT scans and xrays,

meaning no

> fungus, contrary to the Mayo clinic announcement that most

recurrent

> sinusitis is fungal.

>

> I would be interested in having a chat about this. Anyone else? We

> could agree on a day and time in advance.

>

> Addy

> Group co-owner

>

>

[Guest guest]

I'd be interested in chatting. Like everyone else my asthma and sinus

infections are linked together. I have chronic sinusitis (major

polyps) and have had a couple sinus surgeries which didn't

particularly solve my problem. Interesting that you mention Mayo

since I also went to Mayo where they told me that my problem was

fungal (explained to me as the regular every-day fungus that everyone

has in their sinuses) - contrary to the opinion of my other doctors.

I used itraconazole for quite a while to kill the fungus, but finally

decided that it made no difference at all for me. Antiobiotics do

not work on my sinus infections - I've tried them all. The only thing

I have found effective in curing my sinus infections is prednisone.

If I have a sinus infection my asthmas flares. If I am not taking

prednisone, I will get a sinus infection. The Xolair has helped me

to lower my dose of prednisone, but I still must take it every day to

keep sinus infections away. I still occassionally get sinus

infections and must then simply raise my dose of prednisone. I can

always tell when the polyps have returned without anyone looking in

my sinuses because they have distinct odor (not good either.)

So, yes, I'd be very interested in chatting about this. Count me in.

Peggy

> > I know at least a handful of us suffer from what I call severe

> allergic

> > sinus disease - chronic inflammation and recurrent sinus

> infections

> > which repeatedly show up as normal under CT scans and xrays,

> meaning no

> > fungus, contrary to the Mayo clinic announcement that most

> recurrent

> > sinusitis is fungal.

> >

> > I would be interested in having a chat about this. Anyone else?

We

> > could agree on a day and time in advance.

> >

> > Addy

> > Group co-owner

> >

> >

[Guest guest]

I'm hoping to be one of those who benefits from Xolair in regard to sinuses.

I've refused surgery because my nasal passages only have a slight deviation on

one side plus surgery is obviously NOT going to cure severe lifelong allergies.

Without any significant structural problems I tend to believe (as does my doc)

that it's probably mostly (if not all) allergy based. There can be many

different reasons for sinusitis - structural problems and other diseases. Many

who try Xolair probably have a propensity for sinusitis to begin with ... i.e.,

there's a cycle of infections ... and if they were in the cycle of active

infection at the time they took Xolair it would (or should be) reported even if

Xolair was not to blame.

I can't remember seeing Xolair really associated with infection, though, is

it? i.e., the cancer thing was really considered statistically insignificant

although more research is needed. I read a scholarly paper somewhere on the

internet that reviewed the cases where cancer had occurred and as I recollect

(don't totally hold me to this precisely) most of the patients had had cancer

before using Xolair. There might have been 2 (not sure about that) who had

never had cancer and that was out of several thousand, I believe, during the

trials. Hopefully more research will be done on Xolair and the info made

public.

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[Guest guest]

Oh, my. My sinuses are not quite that bad. Close tho. Do you rinse

(your sinuses)??

>

> > Interesting you should mention the odor. I think it

> > sort of smells like coal tar, but at the same time,

> > and even when I don't smell the coal tar, I have

> > lost the sense of smell much of the time. One of

> > the theories my dox (I have four) have is that the

> > allergies are caused by the sinusitis and the

> > sinusitis is caused by the allergies. I think this

> > is known as a catch 22.

> >

> > Terry a.k.a. Ohldepharte

> >

> > ----- Original Message -----

> > From: paroof

> >

> > Sent: Friday, February 16, 2007 11:51 AM

> > Subject: [ ] Re: severe allergic

> > disease chat?

> >

> >

> >

>