xolair

[Guest guest]

In a message dated 6/19/2003 3:54:21 PM Mountain Daylight Time, barbandhugh@... writes:

Sounds like it could be helpful to Samters patients. I was wondering if anyone else saw the article or knew anything about it.

Barbara,

This drug does not look like it will be of help to Samter's syndrome patients unless they also have true, severe, "IgE mediated allergies" such as cat, housedust, pollen allergies, etc. This medication is also very expensive and apparently only given by shot and would only be for those with severe IgE mediated allergies not responsive to cheaper, more convenient treatments.

see http://f.about.com/z/js/spr08sm.htm

Bob McGinnis

[Guest guest]

In a message dated 6/19/2003 5:38:33 PM Mountain Daylight Time, RMcginnis writes:

http://f.about.com/z/js/spr08sm.htm

Unfortunately this link above doesn't work, but if you look under Google, you'll find information on this drug.

Bob

In a message dated 6/19/2003 3:54:21 PM Mountain Daylight Time, barbandhugh@... writes:

Sounds like it could be helpful to Samters patients. I was wondering if anyone else saw the article or knew anything about it.

Barbara,

This drug does not look like it will be of help to Samter's syndrome patients unless they also have true, severe, "IgE mediated allergies" such as cat, housedust, pollen allergies, etc. This medication is also very expensive and apparently only given by shot and would only be for those with severe IgE mediated allergies not responsive to cheaper, more convenient treatments.

see http://f.about.com/z/js/spr08sm.htm

Bob McGinnis

[Guest guest]

In a message dated 6/20/2003 5:54:40 PM Mountain Daylight Time, truelori@... writes:

I am not sure what you mean, Bob, about the IgE, exactly. Are you saying

Samters patients don't have high levels of IgE?

IgE mediated disease is true "allergic disease" mediated by IgE antibodies to "allergens" such as pollen, cat dander, housedust mite parts, etc.

Aspirin sensitivity is a disorder of prostaglandins metabolism. Though the symptoms are similar, the underlying cause is different.

Some people have both problems, however.

Bob

[Guest guest]

Lori,

I actually went to an allergist and he did some blood work and said that I would be a good candidate for Xolair. The doctors office had to fill out a bunch of paperwork and submit the results of my blood test and then I was "approved" to take the drug. It is very controlled and is supplied by only 3 specialized pharmacies in the United States. Each shot costs around $520. My insurance company covers around $465 and the pharmacy accepts that as "full payment". I am also taking Singulair, Flonase, Flovent, Servent and 2 aspirin/day.

I will keep you posted.

Rob

Xolair

Rob, please keep us posted on the Xolair treatments. I find it veryinteresting. Does your insurance pay for it? What does your doctor writeas the indication? If they don't pay for it, I assume it's very expensive... do you know how much?Are you on any other medications besides the albuterol?Lori

[Guest guest]

In a message dated 4/12/2005 5:40:56 AM US Mountain Standard Time, rob@... writes:

.... and it cost about $500 per injection. (Xolair)

Wow !! My first reaction was that might not be too bad if you do it every 6 months. But it requires an injection every 2-4 weeks. Wonder if health insurance covers it. Think I'll go see my Wal Mart doctor and see if he has any coupons. Either that or I'm going to start a hamster ranch and sell those little puppies for $10,000 a gross.

Guess I'll cross Xolair off the shopping list and stick with Claritin. Must be pretty labor intensive to take out those tiny Chinese ovaries. Wonder what they do with the fur afterwards.

[Guest guest]

.... and it cost about $500 per injection.

Xolair

XOLAIR Omalizumab

For Subcutaneous Use

DESCRIPTION

Xolair (Omalizumab) is a recombinant DNA-derived humanized IgG1k monoclonal

antibody that selectively binds to human immunoglobulin E (IgE). The

antibody has a molecular weight of approximately 149 kilodaltons. Xolair is

produced by a Chinese hamster ovary cell suspension culture in a nutrient

medium containing the antibiotic gentamicin. Gentamicin is not detectable in

the final product.

Xolair is a sterile, white, preservative-free, lyophilized powder contained

in a single-use vial that is reconstituted with Sterile Water for Injection

(SWFI), USP, and administered as a subcutaneous

(SC) injection. A Xolair vial contains 202.5 mg of Omalizumab, 145.5 mg

sucrose, 2.8 mg L-histidine hydrochloride monohydrate, 1.8 mg L- histidine,

and 0.5 mg polysorbate 20, and is designed to deliver 150 mg of Omalizumab

in 1.2 mL after reconstitution with 1.4 mL SWFI, USP.

[Guest guest]

For those of you samterites that also have CSS, we have seen pretty good success in bringing down my wife's eosinophyl levels with Xolair. It was a bit of a struggle to get the insurance to pay for it though!

-Will

RE: Xolair

.... and it cost about $500 per injection. -----Original Message-----From: Trudy [mailto:iamthezookeeper@...] Sent: Tuesday, April 12, 2005 6:48 AMsamters Subject: XolairXOLAIR Omalizumab For Subcutaneous Use DESCRIPTIONXolair (Omalizumab) is a recombinant DNA-derived humanized IgG1k monoclonalantibody that selectively binds to human immunoglobulin E (IgE). Theantibody has a molecular weight of approximately 149 kilodaltons. Xolair isproduced by a Chinese hamster ovary cell suspension culture in a nutrientmedium containing the antibiotic gentamicin. Gentamicin is not detectable inthe final product. Xolair is a sterile, white, preservative-free, lyophilized powder containedin a single-use vial that is reconstituted with Sterile Water for Injection(SWFI), USP, and administered as a subcutaneous(SC) injection. A Xolair vial contains 202.5 mg of Omalizumab, 145.5 mgsucrose, 2.8 mg L-histidine hydrochloride monohydrate, 1.8 mg L- histidine,and 0.5 mg polysorbate 20, and is designed to deliver 150 mg of Omalizumabin 1.2 mL after reconstitution with 1.4 mL SWFI, USP.

[Guest guest]

Xolair

> Just curious whether anyone here has tried Xolair. There is a study at

> the University of Chicago to determine the effects of Xolair on

> chronic sinusitis. I am stongly considering participating in this

> study. (Still trying to get smell and taste back.) Looking for

> additional info.

>

> Rose

>

>

>

>

>

>

>

[Guest guest]

Rose: I have tried Xolair and was on it for just under a year. I took it for

allergic asthma. My sinus doctor also wanted me to take it for my sinuses as

well. I thought it worked incredibly well. My insurance compnay just denied

it two months ago because it worked so well I was able to come off about

four meds and had no asthma symptoms and my sinuses were improved. Now

things are exploding. The insurance company said it wasn't designed to work

that well that you could be able to be off your asthma meds. ( they off

course did not tell me that) Carol

Xolair

> Just curious whether anyone here has tried Xolair. There is a study at

> the University of Chicago to determine the effects of Xolair on

> chronic sinusitis. I am stongly considering participating in this

> study. (Still trying to get smell and taste back.) Looking for

> additional info.

>

> Rose

>

>

>

>

>

>

>

[Guest guest]

My wife has been on Xolair and has seen a lot of benefits with regards to the asthmatic component. As far as the chronic sinusitis goes, however, we had it well under control before she started on the xolair using sinus nebulized betamethasone. This has been a godsend.

-Will

Xolair

Just curious whether anyone here has tried Xolair. There is a study at the University of Chicago to determine the effects of Xolair on chronic sinusitis. I am stongly considering participating in this study. (Still trying to get smell and taste back.) Looking for additional info.Rose

[Guest guest]

Thanks for the replies; I have to make a decision on this soon.

Rose

>

> Just curious whether anyone here has tried Xolair. There is a study

at

> the University of Chicago to determine the effects of Xolair on

> chronic sinusitis. I am stongly considering participating in this

> study. (Still trying to get smell and taste back.) Looking for

> additional info.

>

> Rose

>

[Guest guest]

In a message dated 2/20/2006 7:49:52 P.M. US Mountain Standard Time, s2french@... writes:

My Doctor agreed today to let me try Xolair. Does anyone have any information on this and what I can expect.

You might want to read through the messages of another group. Hope it helps. Make sure your insurance company agrees to it first:

: Asthmatics on Xolair (or)

/

Good luck.

(AZ)

[Guest guest]

Xolair works very very well for those who have allergic asthma and a high

IgE. Outside of this criteria I have no idea. I have Samter's , Churg

Strauss Vasculitis and allergic asthma and so the Xolair worked great. No

side effects for me. Carol

xolair

> My Doctor agreed today to let me try Xolair. Does anyone have any

> information on this and what I can expect.

>

>

>

>

>

>

>

[Guest guest]

I've been on xolair for over a year. I cannot image how bad my asthma would be without it as I travel in my job and always seem to get sick after each flight. So I have no idea what a difference it makes - and I'm not willing to give it up to find out. It's very expensive and a hassle to get shots every 4 weeks but seems to help. Besides xolair, I take zyflo, veramyst, singular, advair, and albuteral (as needed). (Frequently I'm also on prednisone and antibiotics for months.) Some days I sure feel alot older than my age (54)! But thankful I didn't get all this STUFF until I was in my 40s. Good Luck to you, Bill.

Reg

From: Bill Cullifer <billcullifer@...>Subject: xolair"samters " <samters >Date: Sunday, September 14, 2008, 10:52 AM

Howdy all!I & #39;m a 8 year samters sufferer and my asthma has progressed to the point where my doctor has reccomended xolair. My question is how effective is this drug? Has anyone within this list been on this for a couple of years?Bill

[Guest guest]

I take Xolair and I swear by it. It really works. The insurance company approves it once a year and I give myself shots twice a month. It started out as three shots but the nurses learned to measure it into two shots. Now I just do them quickly in each thigh. It is expensive but thank God for insurance.

xolairHowdy all!I'm a 8 year samters sufferer and my asthma has progressed to the point where my doctor has reccomended xolair. My question is how effective is this drug? Has anyone within this list been on this for a couple of years?Bill ------------------------------------

[Guest guest]

I did not get sick until my forties also. It started off with years of no sense of smell and terrible cases of sinus infections. From there it went downhill. i am fine now but I remember the bad days.

xolair"samters " <samters >Date: Sunday, September 14, 2008, 10:52 AM

Howdy all!I & #39;m a 8 year samters sufferer and my asthma has progressed to the point where my doctor has reccomended xolair. My question is how effective is this drug? Has anyone within this list been on this for a couple of years?Bill

[Guest guest]

HOW DID YOU OVERCOME THIS??

From: Bill Cullifer <billcullifer>Subject: xolair"samters@group s.com" <samters@groups .com>Date: Sunday, September 14, 2008, 10:52 AM

Howdy all!I & #39;m a 8 year samters sufferer and my asthma has progressed to the point where my doctor has reccomended xolair. My question is how effective is this drug? Has anyone within this list been on this for a couple of years?Bill

[Guest guest]

Is anybody with food allergies taking Xolair? I have a child with severe food

allegies and asthma. I would like to know what other people's experience has

been with xolair.

[Guest guest]

Yes! I've had asthma & food allergies since I was a kid- tomato allergy as well

as being allergic to sulfites. Can I tell you what a PITA it was as a kid

when the whole family sat down to a huge " Italian Sunday Dinner " . Maranara

sauce and red wine...that was...... fun. Over the years I learned to

read labels and try to eat as much home grown veggies, not fresh produce from

the grocery store, because they are prayed with sulfites.

I've been on Xolair since July of 2005 and it has made me less manic about

what I eat. I don't break out in hives when ever I've eaten or drank something

that has tomatoes or sulfites in it.

I know of others who had seafood and peanut & nut allergies and they have been

able to bring those back into their diets as well.

________________________________

From: binnyg <binnyg@...>

Sent: Tue, November 2, 2010 11:55:28 PM

Subject: [ ] xolair

Is anybody with food allergies taking Xolair? I have a child with severe food

allegies and asthma. I would like to know what other people's experience has

been with xolair.

[Guest guest]

I have some food allergies but the longer you take the Xolair the better they

become. It took almost a year for me to see the full benefits of Xolair.

Gwendolyn Rafter

From: binnyg <binnyg@...>

Subject: [ ] xolair

Date: Tuesday, November 2, 2010, 11:55 PM

 

Is anybody with food allergies taking Xolair? I have a child with severe food

allegies and asthma. I would like to know what other people's experience has

been with xolair.

[Guest guest]

Pre-Xolair shots I was airborne reactive to egg if it was cooking in the

same airflow. Twice it triggered anaphylactic reactions. After several years

on Xolair, I now can be in the same space as cooking eggs, but do not eat

them. I did have an accidental exposure in a baked goodie but I was ok.

Melons used to cause my mouth to itch if my husband cut them when I was in

the room but that has gotten so much better. I can even each other fruit

that has come in contact with melons. Big improvement.

So though I started Xolair due to allergic asthma, I think I have gained

just as much food allergy wise.

My daughter has a peanut allergy and several other oral allergy syndrome

fruits and veggies but we are not getting her on Xolair as her asthma is

very well controlled on the lowest dose of Flovent.

B.

[Guest guest]

Thank you so much for sharing your experience, ! the airborne aspect

of ie's allergies are a big part of why we are interested in Xolair for

him. The idea of being able to allow him to simply be in the same room as

nuts, oranges, egg and pork is very tempting!

On Wed, Nov 3, 2010 at 11:27 AM, Belsky <crdb@...> wrote:

> Pre-Xolair shots I was airborne reactive to egg if it was cooking in the

> same airflow. Twice it triggered anaphylactic reactions. After several

> years

> on Xolair, I now can be in the same space as cooking eggs, but do not eat

> them. I did have an accidental exposure in a baked goodie but I was ok.

>

>

>

> Melons used to cause my mouth to itch if my husband cut them when I was in

> the room but that has gotten so much better. I can even each other fruit

> that has come in contact with melons. Big improvement.

>

>

>

> So though I started Xolair due to allergic asthma, I think I have gained

> just as much food allergy wise.

>

>

>

> My daughter has a peanut allergy and several other oral allergy syndrome

> fruits and veggies but we are not getting her on Xolair as her asthma is

> very well controlled on the lowest dose of Flovent.

>

>

>

> B.

>

>

>

>

[Guest guest]

Before I was diagnosed with Sampter's, my asthma and allergies had gotten pretty

bad, and my sinuses were plugged up with polyps. Because my IGe levels were in

the 600's, my allergist had me start taking Xolair injections. After a month or

so, my asthma improved, but it didn't help my polyps a bit. I had sinus

surgery, and within a month or two, the polyps came back in full force, even

though I was still getting Xolair injections.

After some consultations, we decided to stop the Xolair as it wasn't helping,

and the concern of getting a genetically engineered drug pumped into you for

years didn't help.

Going thru aspirin desense helped more.

I've discovered what triggers my asthma and causes the polyps to swell up are

certain additives in foods - mainly MSG, Carrageenan, aspartame, sulfite's,

ammatto (a natural food coloring), and anything that contains high levels of

salycilates. It took over a year of trial and error, lots of blood tests, and

restricting my diet and keeping detailed logs of what I ate.

If I avoid all of those, I don't have to take any asthma inhalers, my sinuses

get much better, and the polyps shrink a bit. However, if I eat anything with

those ingredients, I get bad within a few minutes to as much as 16 hours later,

and it takes 2-3 days for it to get out of my system. So the longest I've going

" drug free " has been about 2 weeks. Problem is I eat out frequently, and you

never know what the restaurants put in the food!

Once I get all of this narrowed down, I'll probably go thru one more sinus

surgery. Got a bit of sense of smell back for a few days after first surgery,

but was pumped up on steroids. Got it back again for a couple of days after

going thru aspirin desense, but nothing since, thanks to the polyps that flame

up when I react to something.

Still taking 1 aspirin a day - half in the morning, and half at lunch time.

Also taking quality probiotics, niacin, and 15000 to 20000 units of vitamin D

each day, which seems to be the best for me. Again, I experimented with various

things, one at a time, to see what what helping and what didn't help.

Don't think anyone on this board has mentioned any good coming out of Xolair.

Plus very few insurance companies will pay for it. I think my treatments were 3

injections every 2-3 weeks, and each injection cost the insurance company about

$500, which came out to about $3000 a month. They were happy when I quit.

Best wishes to you. Think you will find out what works for others may not work

for you.

Jack

>

> Hi All,

>

> I'm new to the group and have found this forum very useful! I have been

living with severe persistent asthma for well over 15 years! In addition, I've

had 4 sinus surgery, the last one roughly 18 months ago. My ENT prescribed an

aggressive treatment shortly after my surgery. Consisting of nasal rinse with

mupirocin and fluticasone, followed by pulimcort in a syringe injected directly

in my nose AND then 3 drops in each nasal of dexamethasone. I'm also on Advair

500/50 twice a day, zyrtec 1 p/d (bedtime) and Allegra 1 p/d (morning). For the

better part of a year I have discussed with my doctors the possibility of going

through desen. We opted to first try Xolair treatments, two injections, twice

per month. I started the injections in July and noticed a dramatic improvement

with my asthma and allergy issues, within the first month! This treatment has

truly been life changing for me! It is potentially a life long treatment, yet

my doctor will re-evaluate the frequency in about 2 months. Has anyone had

experience with Xolair?

>

[Guest guest]

If you are polyp free, have a sense of smell, and your asthma is well controlled

with things like Advair, antihistamines, etc, I'd stay away from the Xolair

injections. Xolair is not a cure, but a treatment, and I would just stay away

from it, as you never know what the long term effects would be.

Have you gone thru aspirin desensitization?

Your best bet would see if you can be tested for food allergies, to help narrow

down what triggers or aggravates your allergies, then try to avoid them.

I think that antibiotics and steroids can mess up the intestinal tract over

time. You may want to get some good quality probiotics, and try taking them for

a month or so. I'm currently taking Sustenex, and it seems to really be better

that other general OTC probiotics. Sustenex is advertised to not dissolve in

your stomach, where acids break it down, but instead dissolve later in your

intestines, where the good bacteria is needed. I noticed that my symptoms

improved a bit after about a week of taking it.

Good luck to you!

> > >

> > > Hi All,

> > >

> > > I'm new to the group and have found this forum very useful! I have

> been living with severe persistent asthma for well over 15 years! In

> addition, I've had 4 sinus surgery, the last one roughly 18 months ago.

> My ENT prescribed an aggressive treatment shortly after my surgery.

> Consisting of nasal rinse with mupirocin and fluticasone, followed by

> pulimcort in a syringe injected directly in my nose AND then 3 drops in

> each nasal of dexamethasone. I'm also on Advair 500/50 twice a day,

> zyrtec 1 p/d (bedtime) and Allegra 1 p/d (morning). For the better part

> of a year I have discussed with my doctors the possibility of going

> through desen. We opted to first try Xolair treatments, two injections,

> twice per month. I started the injections in July and noticed a

> dramatic improvement with my asthma and allergy issues, within the first

> month! This treatment has truly been life changing for me! It is

> potentially a life long treatment, yet my doctor will re-evaluate the

> frequency in about 2 months. Has anyone had experience with Xolair?

> > >

> >

>

[Guest guest]

I know that different things work for different people. I have responded very

well to Xolair (injection 1 x month) in regards to my asthma. However, going

for my second surgery this month and ASA desenstization for n. polyps and

infection.

> >

> > Hi All,

> >

> > I'm new to the group and have found this forum very useful! I have been

living with severe persistent asthma for well over 15 years! In addition, I've

had 4 sinus surgery, the last one roughly 18 months ago. My ENT prescribed an

aggressive treatment shortly after my surgery. Consisting of nasal rinse with

mupirocin and fluticasone, followed by pulimcort in a syringe injected directly

in my nose AND then 3 drops in each nasal of dexamethasone. I'm also on Advair

500/50 twice a day, zyrtec 1 p/d (bedtime) and Allegra 1 p/d (morning). For the

better part of a year I have discussed with my doctors the possibility of going

through desen. We opted to first try Xolair treatments, two injections, twice

per month. I started the injections in July and noticed a dramatic improvement

with my asthma and allergy issues, within the first month! This treatment has

truly been life changing for me! It is potentially a life long treatment, yet

my doctor will re-evaluate the frequency in about 2 months. Has anyone had

experience with Xolair?

> >

>