RE: Re: severe allergic disease chat?

[Guest guest]

my sinus issues have also decreased since the xolair - its just one of those

things.....

heather

pyle456 <coachmac@...> wrote:

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]

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?

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 had sinus surgery a last January and in February

started Xolair.I had been on prednisone for 8 months

prior to my surgery and when trying to ween off had

adrenal crisis. To date I still have no sense of smell

and have had a chronic sinus infection. Antibiotics do

not work. If I tip my head my sinuses drain down my

face. It is awful! The good news is,I have not had an

asthma attack that albuterol did not stop. I do take

advair 50/500 twice a day and albuterol as needed. If

anyone has the answer to the sinus issue I would love

to hear it.

--- Terry <onabeach@...> wrote:

> 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?

>

>

>

[Guest guest]

I have seen various people talk about sinus surgeries. I had a lot of luck with

sinus flushing

with a machine like a water pic. Went almost a year without a sinus infection

and now have had three doses of antibiotics in three months. I would keep

coughing from the excessive drainage. A chiropractor friend told me a bout

another chiropractor who does a maneuver that doctors used to do prior to

antibiotics. He sticks his finger in thr back of the throat and pulls down the

soft palte and sweeps it out with his finger. It was amazing how much mucous

came out. I have had this treamtment twice weekly for four weeks now and it has

almost eliminated the constant coughing I have doing for years.

I recently had my blood tested for Ige levels to get on the Xolair treatment.

As a life long asthmatic and chronic sinusitis sufferer I am looking forward to

seeing if I can achieve the same results that I have read about on this

discussion site.

pyle456 <coachmac@...> wrote:

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?

> >

> >

> >

>

[Guest guest]

Thanks for the suggestion. I am going to look into it.

Good luck with Xolair. It has changed my life.

--- Mike Schwartz <ispmike@...> wrote:

> I have seen various people talk about sinus

> surgeries. I had a lot of luck with sinus flushing

> with a machine like a water pic. Went almost a

> year without a sinus infection and now have had

> three doses of antibiotics in three months. I would

> keep coughing from the excessive drainage. A

> chiropractor friend told me a bout another

> chiropractor who does a maneuver that doctors used

> to do prior to antibiotics. He sticks his finger in

> thr back of the throat and pulls down the soft palte

> and sweeps it out with his finger. It was amazing

> how much mucous came out. I have had this

> treamtment twice weekly for four weeks now and it

> has almost eliminated the constant coughing I have

> doing for years.

> I recently had my blood tested for Ige levels to

> get on the Xolair treatment. As a life long

> asthmatic and chronic sinusitis sufferer I am

> looking forward to seeing if I can achieve the same

> results that I have read about on this discussion

> site.

> pyle456 <coachmac@...> wrote:

> 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?

> > >

> > >

> > >

> >

>

>

>

>

>

>

[Guest guest]

,

I was diagnosed as an asthmatic 3 years ago at 53. Ya hit 50 and your

body falls apart. I too lose my sense of smell for extended lengths of

time. However, it seems my sense of smell gets better when I take

Prednisone (I am currently on 40mg day and night (pulse session)). The

allergist's goal is to eventually get me of the Prednisone but so far

the recurrence of tightness and coughing has not allowed that to happen.

Once I am off the pulse session of Prednisone, the inability to smell

and all the drainage returns within 10 days and I am back to the endless

coughing. At times, I have had to hold my chest because of the aches

and pains the coughing causes. My sense of smell has returned for now

and how great is it to go into a bakery or candle shop and smell all the

aromas. I tend to relish this because I know in a couple of weeks

smelling things will only be a memory.

I have had three nasal surgeries within the last 5 years and am very

reluctant to have another unless there is no other option. The surgery

was not the issue. There was never any pain or discomfort. The

discomfort and pain came during the follow up visits with the doctor who

I am sure was very good (head of EENT at KU med center) but he was

rather rough felt he had to force the the darn tubes clear up in my

sinuses when he sucked out the goo. The doctor said it was because of

the " negative pressure " caused by the sucking out of the stuff.

I coughed and coughed with endless drainage so in an attempt to fix the

problem I am not taking BIAXIN once a day to relive what the doctor

believes might be a sinus infection. Sometimes I feel as though much of

the treatment is a guess and the doctors really don't know what to do.

So sad. I am told that even though sinus drainage is a problem with

most asthmatics the allergists have told me there is no real cure or

remedy to fix the problem other than simply treat the symptoms. You

would think with all we know about medical problems sinus drainage would

have been resolved long ago.

I have not heard about the finger treatment. It sounds very

uncomfortable and possibly irritating. I am not sure it would be a

remedy for me but who knows. If I try everything I might resort to this

treatment. I will keep it on my mind.

I am also on XOLAIR (225 mg in each arm twice a month) for my 250 IgE

results. I am not sure how well it is doing so I asked to increased the

dosage since the nurse was throwing away half a vile every time I came

in to take the injections. She agreed so I am getting the first

increase in the dosage this Friday. Maybe this will help my condition.

I am interested in knowing how well you are doing resolving your

asthmatic issues. Keep everyone notified.

Steve

Have a Good Day

Steve Zimmerman

________________________________

From: [mailto: ]

On Behalf Of maria dunning

Sent: Sunday, February 18, 2007 11:07 AM

Subject: Re: [ ] Re: severe allergic disease chat?

Thanks for the suggestion. I am going to look into it.

Good luck with Xolair. It has changed my life.

--- Mike Schwartz <ispmike@...

<mailto:ispmike%40sbcglobal.net> > wrote:

> I have seen various people talk about sinus

> surgeries. I had a lot of luck with sinus flushing

> with a machine like a water pic. Went almost a

> year without a sinus infection and now have had

> three doses of antibiotics in three months. I would

> keep coughing from the excessive drainage. A

> chiropractor friend told me a bout another

> chiropractor who does a maneuver that doctors used

> to do prior to antibiotics. He sticks his finger in

> thr back of the throat and pulls down the soft palte

> and sweeps it out with his finger. It was amazing

> how much mucous came out. I have had this

> treamtment twice weekly for four weeks now and it

> has almost eliminated the constant coughing I have

> doing for years.

> I recently had my blood tested for Ige levels to

> get on the Xolair treatment. As a life long

> asthmatic and chronic sinusitis sufferer I am

> looking forward to seeing if I can achieve the same

> results that I have read about on this discussion

> site.

> pyle456 <coachmac@...

<mailto:coachmac%40worldnet.att.net> > wrote:

> 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

> > >

<mailto: %40>

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

> > > Subject: [ ] Re: severe allergic

> > > disease chat?

> > >

> > >

> > >

> >

>

>

>

>

>

>