Re: and... (a maybe-related side issue)

[Guest guest]

There is a black box warning on Xolair related to anaphylaxis. I'm sure your

doctor is aware of it. Apparently the anaphylactic reactions can occur within 48

hours of getting the shot. If you are getting these symptoms outside of the 48

hour mark is is not likely the symptoms are related to Xolair. HOWEVER, if I

were you, I would get a 2nd opinion - see another specialist.

Welcome to the group!

Addy

Group co-owner

>

> So, I started the Xolair last November and in January started having recurring

anaphylactic symptoms. I've been in and out of the ER a couple of dozen times

since then. My specialist is still trying to diagnose me. He thinks it may be

vocal cord dysfunction and I'm having a test/procedure for that on the 22nd. It

seems unrelated and all, but sort of weird that it didn't start happening until

after I started the Xolair. The timing of the attacks doesn't actually coincide

with my Xolair shots, though. It makes me really nervous, though, because I've

had to use a lot of epis... I was diagnosed with asthma when I was 5, but it

was controlled until last Summer... Then, my body decided to go psycho on me!

All sorts of weird symptoms have cropped up since then. My specialist wanted to

send me down to National Jewish, but I didn't want to go, so that idea is sort

of off the table for now... I think.

>

> Anyone else experienced anything like this???

>

[Guest guest]

Run, do not pass go to National Jewish. They will get to the bottom of all of

this. I was told I had VCD initially several years ago. Now I am very bad off

and probably got myself to NJ a bit late. Things can change on you overnight.

It takes awhile to get into NJ--sometimes a couple of months so I would suggest

making an appointment. I can not recommend them enough. They are very good to

their patients.

If you have any further questions, you can email me directly.

Leigh

________________________________

From: " nerolagirl@... " <nerolagirl@...>

Sent: Wednesday, July 1, 2009 2:54:42 AM

Subject: [ ] and... (a maybe-related side issue)

So, I started the Xolair last November and in January started having recurring

anaphylactic symptoms. I've been in and out of the ER a couple of dozen times

since then. My specialist is still trying to diagnose me. He thinks it may be

vocal cord dysfunction and I'm having a test/procedure for that on the 22nd. It

seems unrelated and all, but sort of weird that it didn't start happening until

after I started the Xolair. The timing of the attacks doesn't actually coincide

with my Xolair shots, though. It makes me really nervous, though, because I've

had to use a lot of epis... I was diagnosed with asthma when I was 5, but it

was controlled until last Summer... Then, my body decided to go psycho on me!

All sorts of weird symptoms have cropped up since then. My specialist wanted to

send me down to National Jewish, but I didn't want to go, so that idea is sort

of off the table for now... I think.

Anyone else experienced anything like this???

[Guest guest]

I have been using Xolair for about 5 years and it has helped me tremendously. I

agree it is very expensive but the insurance helps a lot. I have not had any bad

side effects since I started the shots. I now take them at home. They send the

meds to me at home and either I give them in my thigh or my husband in my arms.

They have helped with my asthma and my allergies. I do not have problems with my

vocal cords. I do still have sinus problems for the most part but I can do

things with my grand children and my family. I am much better since taking the

xolair.

Gwendolyn Rafter,MAOM,MBA/HRM

From: Leigh McCall-Alton <mccallalton@...>

Subject: Re: [ ] and... (a maybe-related side issue)

Date: Friday, July 3, 2009, 1:38 PM

Run, do not pass go to National Jewish. They will get to the bottom of all of

this. I was told I had VCD initially several years ago. Now I am very bad off

and probably got myself to NJ a bit late. Things can change on you overnight. It

takes awhile to get into NJ--sometimes a couple of months so I would suggest

making an appointment. I can not recommend them enough. They are very good to

their patients.

If you have any further questions, you can email me directly.

Leigh

____________ _________ _________ __

From: " nerolagirlymail (DOT) com " <nerolagirlgmail (DOT) com>

Sent: Wednesday, July 1, 2009 2:54:42 AM

Subject: [ ] and... (a maybe-related side issue)

So, I started the Xolair last November and in January started having recurring

anaphylactic symptoms. I've been in and out of the ER a couple of dozen times

since then. My specialist is still trying to diagnose me. He thinks it may be

vocal cord dysfunction and I'm having a test/procedure for that on the 22nd. It

seems unrelated and all, but sort of weird that it didn't start happening until

after I started the Xolair. The timing of the attacks doesn't actually coincide

with my Xolair shots, though. It makes me really nervous, though, because I've

had to use a lot of epis... I was diagnosed with asthma when I was 5, but it was

controlled until last Summer... Then, my body decided to go psycho on me! All

sorts of weird symptoms have cropped up since then. My specialist wanted to send

me down to National Jewish, but I didn't want to go, so that idea is sort of off

the table for now... I think.

Anyone else experienced anything like this???

[Guest guest]

Hello,

Although not related to xolair, I just wanted to share my husband's experience

with National Jewish as well. (He doesn't take xolair). He had uncontrolled

hives for 2 years, every day; hives everywhere. It was horrible. Numerous and

various kinds of specialists in Houston could not figure it out or control it,

so we finally went to Nat'l Jewish. They were able to get it under control so

he could live a somewhat normal life. Eventually and thankfully the hives

disappeared, hopefully to never return.

I would not hesitate to go there if I had unexplainable problems. No doctor

suggested Nat'l Jewish; I heard about it on another list like this, when I was

doing research on what in the world we were dealing with. I found it's always

good to learn from the people that live with it

Regarding anaphylaxis times, I'm pasting this information about time from

injection to anaphylaxis from the FDA website below.

http://www.fda.gov/Drugs/DrugSafety/PostmarketDrugSafetyInformationforPatientsan\

dProviders/ucm126456.htm

The list below provides information about the time to onset of anaphylaxis

following Xolair administration for these patients.

• 30 minutes or less 35%

• Greater than 30 to 60 minutes 16%

• Greater than 60 to 90 minutes 2%

• Greater than 90 to 120 minutes 6%

• Greater than 2 hours to 6 hours 5%

• Greater than 6 to 12 hours 14%

• Greater than 12 to 24 hours 8%

• Greater than 24 hours (up to 4 days) 5%

• Unknown 9%

Of the reported cases of anaphylaxis, 39% occurred after the first dose of

Xolair, 19% occurred with the second dose, 10% occurred with the third dose, and

the rest after subsequent doses. One case occurred after 39 doses (after 19

months of continuous therapy, anaphylaxis occurred when treatment was restarted

following a 3 month gap). Twenty-three patients who experienced anaphylaxis

were re-challenged with Xolair; among them, 18 had a recurrence of similar

symptoms of anaphylaxis. Four patients who experienced urticaria and not

anaphylaxis were re-challenged with Xolair and developed anaphylaxis upon

re-challenge.