Re: Shock? DOUG AND ADDY??

[Guest guest]

Hi All!!!

Well, I'm 2 weeks into Xolair which has worked wonderfully for me...

However, I woke up this morning with a few hives on my feet and in the palms of

my hands. Not bad... I'm not going to complain. I know more injections

and time will take care of all of my woes

I have a question for Doug and Addy.. I know you were both on Steroids for

a long time before taking the plunge for us and and paving the way for

Xolair for us.... I need your help

The steroids did a lot of damage to me... just like everyone else. Right

now I'm having a VERY hard time coming off of them. How slow did you guys

have to taper? It looks like I might have to do 2 or 3 weeks at a time

weaning down by just 1 mg every 2-3 weeks. The side effects are HORRIBLE!!!

My cortisol was 1.4 (I had previously said 1.64 but was mistaken).. that's

1/2 the normal coritisol for an afternoon lab draw. Not sure what to do

here or how to handle this... it's making me scared of s ... because

I have every symptom Thanks so much for any info you have as far as

how you weaned and/or how slowing you had to go and any side effects you had.

As far as shock, I think is worried about anaphylactic shock that

has noted on the black box warning for Xolair. ??? I was SCARED

TO DEATH to get this injection for that exact same reason! My first

injections were 2/17/11... I'm still breathing IT's VERY rare that it

happens... my physician has several that take Xolair injections and never had

they had a problem. Take a deep breath, count your blessings for being

approved for Xolair and know that you'll soon be on your way to a normal life

again. I know it's scary but once you're over the hump of getting the

injections, you'll be great We're all here for you for any questions you

might have!

My very best to all of you,

____________________________________________________________________________

______________

Hi ,

I am your neighbor in northwest Arkansas. I was the first person in the

state to get Xolair in 2003.

I had been on 40 mg of Prednisone a day for years and was tearing up my

body. It had made me Type II diabetic, bi polar II, gain up to 210 pounds,

cataracts, and the disks in my neck were effected so bad that I had to have

two fusion surgeries. I was at my wits end with steroids and was in

desperate need of help.

Prednisone is the evil drug NOT xolair!! I know that for a fact!!

Xolair was completely new in 2003 and I had no websites to go to for

advice so I started this one.

I (without hesitation)told my doctor " Yes, please, anything to get me off

prednisone. " I can honestly say that Xolair saved my life.

I am sure that many others will tell you the same thing in this group.

Doug

Group founder

Breathing down to his toes WITHOUT Prednisone )

[Guest guest]

Hi,

It's been so long since I came off long-term use of pred, I don't remember how I

weaned off. We've had ots of group members wean off weeks at a time, rather than

days. We also have had a couple of folks taper down a single mg at a time. I

would recommend you talk with both your pulmo/allergist and your GP. My biggest

symptom weaning off pred was horrible waves of fatigue.

Best of luck,

Addy

Group Co-owner

>

> Hi All!!!

>

> Well, I'm 2 weeks into Xolair which has worked wonderfully for me...

> However, I woke up this morning with a few hives on my feet and in the palms

of

> my hands. Not bad... I'm not going to complain. I know more injections

> and time will take care of all of my woes

>

> I have a question for Doug and Addy.. I know you were both on Steroids for

> a long time before taking the plunge for us and and paving the way for

> Xolair for us.... I need your help

>

> The steroids did a lot of damage to me... just like everyone else. Right

> now I'm having a VERY hard time coming off of them. How slow did you guys

> have to taper? It looks like I might have to do 2 or 3 weeks at a time

> weaning down by just 1 mg every 2-3 weeks. The side effects are HORRIBLE!!!

> My cortisol was 1.4 (I had previously said 1.64 but was mistaken).. that's

> 1/2 the normal coritisol for an afternoon lab draw. Not sure what to do

> here or how to handle this... it's making me scared of s ... because

> I have every symptom Thanks so much for any info you have as far as

> how you weaned and/or how slowing you had to go and any side effects you had.

>

>

> As far as shock, I think is worried about anaphylactic shock that

> has noted on the black box warning for Xolair. ??? I was SCARED

> TO DEATH to get this injection for that exact same reason! My first

> injections were 2/17/11... I'm still breathing IT's VERY rare that it

> happens... my physician has several that take Xolair injections and never had

> they had a problem. Take a deep breath, count your blessings for being

> approved for Xolair and know that you'll soon be on your way to a normal life

> again. I know it's scary but once you're over the hump of getting the

> injections, you'll be great We're all here for you for any questions you

> might have!

>

> My very best to all of you,

>

>

>

>

>

> ____________________________________________________________________________

> ______________

>

>

>

> Hi ,

>

> I am your neighbor in northwest Arkansas. I was the first person in the

> state to get Xolair in 2003.

>

> I had been on 40 mg of Prednisone a day for years and was tearing up my

> body. It had made me Type II diabetic, bi polar II, gain up to 210 pounds,

> cataracts, and the disks in my neck were effected so bad that I had to have

> two fusion surgeries. I was at my wits end with steroids and was in

> desperate need of help.

>

> Prednisone is the evil drug NOT xolair!! I know that for a fact!!

>

> Xolair was completely new in 2003 and I had no websites to go to for

> advice so I started this one.

>

> I (without hesitation)told my doctor " Yes, please, anything to get me off

> prednisone. " I can honestly say that Xolair saved my life.

>

> I am sure that many others will tell you the same thing in this group.

>

> Doug

> Group founder

> Breathing down to his toes WITHOUT Prednisone )

>

>

>

>

>

>

>

>

>

[Guest guest]

Hi,

I have been on pred for years. When I get below 10mg, I wean at 1 mg a month and

then I stay at 5mg for 4 months.......slower you go, easier it is......talk to

your MD about getting an endo consult to guide them.....

________________________________

From: pyle456 <jamcculloch2@...>

Sent: Tue, March 8, 2011 11:01:13 AM

Subject: Re: [ ]Shock? DOUG AND ADDY??

Hi,

It's been so long since I came off long-term use of pred, I don't remember how I

weaned off. We've had ots of group members wean off weeks at a time, rather than

days. We also have had a couple of folks taper down a single mg at a time. I

would recommend you talk with both your pulmo/allergist and your GP. My biggest

symptom weaning off pred was horrible waves of fatigue.

Best of luck,

Addy

Group Co-owner

>

> Hi All!!!

>

> Well, I'm 2 weeks into Xolair which has worked wonderfully for me...

> However, I woke up this morning with a few hives on my feet and in the palms

>of

>

> my hands. Not bad... I'm not going to complain. I know more injections

> and time will take care of all of my woes

>

> I have a question for Doug and Addy.. I know you were both on Steroids for

> a long time before taking the plunge for us and and paving the way for

> Xolair for us.... I need your help

>

> The steroids did a lot of damage to me... just like everyone else. Right

> now I'm having a VERY hard time coming off of them. How slow did you guys

> have to taper? It looks like I might have to do 2 or 3 weeks at a time

> weaning down by just 1 mg every 2-3 weeks. The side effects are HORRIBLE!!!

> My cortisol was 1.4 (I had previously said 1.64 but was mistaken).. that's

> 1/2 the normal coritisol for an afternoon lab draw. Not sure what to do

> here or how to handle this... it's making me scared of s ... because

> I have every symptom Thanks so much for any info you have as far as

> how you weaned and/or how slowing you had to go and any side effects you had.

>

>

> As far as shock, I think is worried about anaphylactic shock that

> has noted on the black box warning for Xolair. ??? I was SCARED

> TO DEATH to get this injection for that exact same reason! My first

> injections were 2/17/11... I'm still breathing IT's VERY rare that it

> happens... my physician has several that take Xolair injections and never had

> they had a problem. Take a deep breath, count your blessings for being

> approved for Xolair and know that you'll soon be on your way to a normal life

> again. I know it's scary but once you're over the hump of getting the

> injections, you'll be great We're all here for you for any questions you

> might have!

>

> My very best to all of you,

>

>

>

>

>

> __________________________________________________________

> ______________

>

>

>

> Hi ,

>

> I am your neighbor in northwest Arkansas. I was the first person in the

> state to get Xolair in 2003.

>

> I had been on 40 mg of Prednisone a day for years and was tearing up my

> body. It had made me Type II diabetic, bi polar II, gain up to 210 pounds,

> cataracts, and the disks in my neck were effected so bad that I had to have

> two fusion surgeries. I was at my wits end with steroids and was in

> desperate need of help.

>

> Prednisone is the evil drug NOT xolair!! I know that for a fact!!

>

> Xolair was completely new in 2003 and I had no websites to go to for

> advice so I started this one.

>

> I (without hesitation)told my doctor " Yes, please, anything to get me off

> prednisone. " I can honestly say that Xolair saved my life.

>

> I am sure that many others will tell you the same thing in this group.

>

> Doug

> Group founder

> Breathing down to his toes WITHOUT Prednisone )

>

>

>

>

>

>

>

>

>

[Guest guest]

I tapered recently and tried a new technique which worked well for me. While I

was still at a relatively high dose (30 mgs), my pulmo had me go to every other

day. So, one day of 30mgs and one day with no pred. The therapeutic effects

stayed at the 30mg level but the side effects started disappating more quickly.

Then, I continued the slow taper, but keeping whatever dose it was at every

other day. That was less painful than previous tapers. Evidently it's a new

strategy that doctors are only recently trying, so ask your doctor about it.

Good luck!

nne

> >

> > Hi All!!!

> >

> > Well, I'm 2 weeks into Xolair which has worked wonderfully for me...

> > However, I woke up this morning with a few hives on my feet and in the

palms

> >of

> >

> > my hands. Not bad... I'm not going to complain. I know more injections

> > and time will take care of all of my woes

> >

> > I have a question for Doug and Addy.. I know you were both on Steroids for

> > a long time before taking the plunge for us and and paving the way for

> > Xolair for us.... I need your help

> >

> > The steroids did a lot of damage to me... just like everyone else. Right

> > now I'm having a VERY hard time coming off of them. How slow did you guys

> > have to taper? It looks like I might have to do 2 or 3 weeks at a time

> > weaning down by just 1 mg every 2-3 weeks. The side effects are

HORRIBLE!!!

> > My cortisol was 1.4 (I had previously said 1.64 but was mistaken).. that's

> > 1/2 the normal coritisol for an afternoon lab draw. Not sure what to do

> > here or how to handle this... it's making me scared of s ... because

> > I have every symptom Thanks so much for any info you have as far as

> > how you weaned and/or how slowing you had to go and any side effects you

had.

>

> >

> >

> > As far as shock, I think is worried about anaphylactic shock that

> > has noted on the black box warning for Xolair. ??? I was SCARED

> > TO DEATH to get this injection for that exact same reason! My first

> > injections were 2/17/11... I'm still breathing IT's VERY rare that it

> > happens... my physician has several that take Xolair injections and never

had

> > they had a problem. Take a deep breath, count your blessings for being

> > approved for Xolair and know that you'll soon be on your way to a normal

life

> > again. I know it's scary but once you're over the hump of getting the

> > injections, you'll be great We're all here for you for any questions

you

>

> > might have!

> >

> > My very best to all of you,

> >

> >

> >

> >

> >

> > __________________________________________________________

> > ______________

> >

> >

> >

> > Hi ,

> >

> > I am your neighbor in northwest Arkansas. I was the first person in the

> > state to get Xolair in 2003.

> >

> > I had been on 40 mg of Prednisone a day for years and was tearing up my

> > body. It had made me Type II diabetic, bi polar II, gain up to 210 pounds,

> > cataracts, and the disks in my neck were effected so bad that I had to have

> > two fusion surgeries. I was at my wits end with steroids and was in

> > desperate need of help.

> >

> > Prednisone is the evil drug NOT xolair!! I know that for a fact!!

> >

> > Xolair was completely new in 2003 and I had no websites to go to for

> > advice so I started this one.

> >

> > I (without hesitation)told my doctor " Yes, please, anything to get me off

> > prednisone. " I can honestly say that Xolair saved my life.

> >

> > I am sure that many others will tell you the same thing in this group.

> >

> > Doug

> > Group founder

> > Breathing down to his toes WITHOUT Prednisone )

> >

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

HI Tzarina,

Doug (group founder) is awesome and so is XOLAIR! I've had my first round

of it and I've been hive/swelling and anaphylaxis free for a month. My

next dose is Monday so I'm noticing everything starting to come back

but it's the first time I've had relief in 3 YEARS!!!!

I've lived on prednisone for the last 3 years and my body has deteriorated

terribly. I'm now beginning to wean off of it... it's been miserable

weaning but I'm SO GRATEFUL to have had 3 weeks of remission! I can't WAIT for

Monday to come!!!!

Best of luck with the Xolair... I pray it works so well for you as it has

many others of us!

My Best,

In a message dated 3/10/2011 3:07:30 P.M. Eastern Standard Time,

uca79iii@... writes:

Tzarina

[Guest guest]

My Pulmo had me use this alternate day approach and it helped but I still

couldn't get lower than 10 every other day without significant secondary adrenal

insufficiency symptoms. My Endo. Was able to switch me to Hydrocortisone and I

got immediate reduction of negative side effects from pred. Had to slowing taper

that too. Several months. But switching to HC did wonders for me. Karin

Sent from my iPhone

On Mar 9, 2011, at 8:37 PM, " gilligan7968 " <gilligan7968@...> wrote:

> I tapered recently and tried a new technique which worked well for me. While I

was still at a relatively high dose (30 mgs), my pulmo had me go to every other

day. So, one day of 30mgs and one day with no pred. The therapeutic effects

stayed at the 30mg level but the side effects started disappating more quickly.

Then, I continued the slow taper, but keeping whatever dose it was at every

other day. That was less painful than previous tapers. Evidently it's a new

strategy that doctors are only recently trying, so ask your doctor about it.

>

> Good luck!

> nne

>

>

> > >

> > > Hi All!!!

> > >

> > > Well, I'm 2 weeks into Xolair which has worked wonderfully for me...

> > > However, I woke up this morning with a few hives on my feet and in the

palms

> > >of

> > >

> > > my hands. Not bad... I'm not going to complain. I know more injections

> > > and time will take care of all of my woes

> > >

> > > I have a question for Doug and Addy.. I know you were both on Steroids for

> > > a long time before taking the plunge for us and and paving the way for

> > > Xolair for us.... I need your help

> > >

> > > The steroids did a lot of damage to me... just like everyone else. Right

> > > now I'm having a VERY hard time coming off of them. How slow did you guys

> > > have to taper? It looks like I might have to do 2 or 3 weeks at a time

> > > weaning down by just 1 mg every 2-3 weeks. The side effects are

HORRIBLE!!!

> > > My cortisol was 1.4 (I had previously said 1.64 but was mistaken).. that's

> > > 1/2 the normal coritisol for an afternoon lab draw. Not sure what to do

> > > here or how to handle this... it's making me scared of s ...

because

> > > I have every symptom Thanks so much for any info you have as far as

> > > how you weaned and/or how slowing you had to go and any side effects you

had.

> >

> > >

> > >

> > > As far as shock, I think is worried about anaphylactic shock

that

> > > has noted on the black box warning for Xolair. ??? I was SCARED

> > > TO DEATH to get this injection for that exact same reason! My first

> > > injections were 2/17/11... I'm still breathing IT's VERY rare that it

> > > happens... my physician has several that take Xolair injections and never

had

> > > they had a problem. Take a deep breath, count your blessings for being

> > > approved for Xolair and know that you'll soon be on your way to a normal

life

> > > again. I know it's scary but once you're over the hump of getting the

> > > injections, you'll be great We're all here for you for any questions

you

> >

> > > might have!

> > >

> > > My very best to all of you,

> > >

> > >

> > >

> > >

> > >

> > > __________________________________________________________

> > > ______________

> > >

> > >

> > >

> > > Hi ,

> > >

> > > I am your neighbor in northwest Arkansas. I was the first person in the

> > > state to get Xolair in 2003.

> > >

> > > I had been on 40 mg of Prednisone a day for years and was tearing up my

> > > body. It had made me Type II diabetic, bi polar II, gain up to 210 pounds,

> > > cataracts, and the disks in my neck were effected so bad that I had to

have

> > > two fusion surgeries. I was at my wits end with steroids and was in

> > > desperate need of help.

> > >

> > > Prednisone is the evil drug NOT xolair!! I know that for a fact!!

> > >

> > > Xolair was completely new in 2003 and I had no websites to go to for

> > > advice so I started this one.

> > >

> > > I (without hesitation)told my doctor " Yes, please, anything to get me off

> > > prednisone. " I can honestly say that Xolair saved my life.

> > >

> > > I am sure that many others will tell you the same thing in this group.

> > >

> > > Doug

> > > Group founder

> > > Breathing down to his toes WITHOUT Prednisone )

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

[Guest guest]

I'm about to begin xolair and I asked my allergist about the anaphalaxsis issue.

He said xolair is SAFER than traditional allergy immunotherapy and that's why it

can be given even during asthma flare ups. He said allergy immunotherapy has

been around for a very long time but, if the FDA had to approave it now, it

probably wouldn't be approved. He said xolair is definitely safer than

continued prednisone use. He's a prominent allergist in Boston and is doing a

study on xolair use in people with chronic hives.

By the way (group owners), I keep having to re-join this group even though I've

done so several times already in the past few months. Please fix this. Thanks.

-- Tzarina

> > >

> > > Hi All!!!

> > >

> > > Well, I'm 2 weeks into Xolair which has worked wonderfully for me...

> > > However, I woke up this morning with a few hives on my feet and in the

palms

> > >of

> > >

> > > my hands. Not bad... I'm not going to complain. I know more injections

> > > and time will take care of all of my woes

> > >

> > > I have a question for Doug and Addy.. I know you were both on Steroids for

> > > a long time before taking the plunge for us and and paving the way for

> > > Xolair for us.... I need your help

> > >

> > > The steroids did a lot of damage to me... just like everyone else. Right

> > > now I'm having a VERY hard time coming off of them. How slow did you

guys

> > > have to taper? It looks like I might have to do 2 or 3 weeks at a time

> > > weaning down by just 1 mg every 2-3 weeks. The side effects are

HORRIBLE!!!

> > > My cortisol was 1.4 (I had previously said 1.64 but was mistaken)..

that's

> > > 1/2 the normal coritisol for an afternoon lab draw. Not sure what to do

> > > here or how to handle this... it's making me scared of s ...

because

> > > I have every symptom Thanks so much for any info you have as far as

> > > how you weaned and/or how slowing you had to go and any side effects you

had.

> >

> > >

> > >

> > > As far as shock, I think is worried about anaphylactic shock

that

> > > has noted on the black box warning for Xolair. ??? I was SCARED

> > > TO DEATH to get this injection for that exact same reason! My first

> > > injections were 2/17/11... I'm still breathing IT's VERY rare that it

> > > happens... my physician has several that take Xolair injections and never

had

> > > they had a problem. Take a deep breath, count your blessings for being

> > > approved for Xolair and know that you'll soon be on your way to a normal

life

> > > again. I know it's scary but once you're over the hump of getting the

> > > injections, you'll be great We're all here for you for any questions

you

> >

> > > might have!

> > >

> > > My very best to all of you,

> > >

> > >

> > >

> > >

> > >

> > > __________________________________________________________

> > > ______________

> > >

> > >

> > >

> > > Hi ,

> > >

> > > I am your neighbor in northwest Arkansas. I was the first person in the

> > > state to get Xolair in 2003.

> > >

> > > I had been on 40 mg of Prednisone a day for years and was tearing up my

> > > body. It had made me Type II diabetic, bi polar II, gain up to 210

pounds,

> > > cataracts, and the disks in my neck were effected so bad that I had to

have

> > > two fusion surgeries. I was at my wits end with steroids and was in

> > > desperate need of help.

> > >

> > > Prednisone is the evil drug NOT xolair!! I know that for a fact!!

> > >

> > > Xolair was completely new in 2003 and I had no websites to go to for

> > > advice so I started this one.

> > >

> > > I (without hesitation)told my doctor " Yes, please, anything to get me off

> > > prednisone. " I can honestly say that Xolair saved my life.

> > >

> > > I am sure that many others will tell you the same thing in this group.

> > >

> > > Doug

> > > Group founder

> > > Breathing down to his toes WITHOUT Prednisone )

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

[Guest guest]

>

> I'm about to begin xolair and I asked my allergist about the anaphalaxsis

issue. He said xolair is SAFER than traditional allergy immunotherapy and

that's why it can be given even during asthma flare ups. He said allergy

immunotherapy has been around for a very long time but, if the FDA had to

approave it now, it probably wouldn't be approved. He said xolair is definitely

safer than continued prednisone use. He's a prominent allergist in Boston and

is doing a study on xolair use in people with chronic hives.

>

> By the way (group owners), I keep having to re-join this group even though

I've done so several times already in the past few months. Please fix this.

Thanks.

>

> -- Tzarina

Tzarina,

Next time this happens email me and I will try to find what the problem is.

uca79iii@...

Doug

Group founder

[Guest guest]

Thank you, Thank you, Thank you

In a message dated 3/10/2011 3:05:01 P.M. Eastern Standard Time,

andyandkarink@... writes:

My Pulmo had me use this alternate day approach and it helped but I still

couldn't get lower than 10 every other day without significant secondary

adrenal insufficiency symptoms. My Endo. Was able to switch me to

Hydrocortisone and I got immediate reduction of negative side effects from

pred. Had

to slowing taper that too. Several months. But switching to HC did wonders

for me. Karin

Sent from my iPhone

On Mar 9, 2011, at 8:37 PM, " gilligan7968 " <_gilligan7968@..._

(mailto:gilligan7968@...) > wrote:

> I tapered recently and tried a new technique which worked well for me.

While I was still at a relatively high dose (30 mgs), my pulmo had me go to

every other day. So, one day of 30mgs and one day with no pred. The

therapeutic effects stayed at the 30mg level but the side effects started

disappating more quickly. Then, I continued the slow taper, but keeping

whatever

dose it was at every other day. That was less painful than previous tapers.

Evidently it's a new strategy that doctors are only recently trying, so ask

your doctor about it.

>

> Good luck!

> nne

>

>

> > >

> > > Hi All!!!

> > >

> > > Well, I'm 2 weeks into Xolair which has worked wonderfully for me...

> > > However, I woke up this morning with a few hives on my feet and in

the palms

> > >of

> > >

> > > my hands. Not bad... I'm not going to complain. I know more

injections

> > > and time will take care of all of my woes

> > >

> > > I have a question for Doug and Addy.. I know you were both on

Steroids for

> > > a long time before taking the plunge for us and and paving the way

for

> > > Xolair for us.... I need your help

> > >

> > > The steroids did a lot of damage to me... just like everyone else.

Right

> > > now I'm having a VERY hard time coming off of them. How slow did you

guys

> > > have to taper? It looks like I might have to do 2 or 3 weeks at a

time

> > > weaning down by just 1 mg every 2-3 weeks. The side effects are

HORRIBLE!!!

> > > My cortisol was 1.4 (I had previously said 1.64 but was mistaken)..

that's

> > > 1/2 the normal coritisol for an afternoon lab draw. Not sure what to

do

> > > here or how to handle this... it's making me scared of s ...

because

> > > I have every symptom Thanks so much for any info you have as far

as

> > > how you weaned and/or how slowing you had to go and any side effects

you had.

> >

> > >

> > >

> > > As far as shock, I think is worried about anaphylactic

shock that

> > > has noted on the black box warning for Xolair. ??? I was

SCARED

> > > TO DEATH to get this injection for that exact same reason! My first

> > > injections were 2/17/11... I'm still breathing IT's VERY rare

that it

> > > happens... my physician has several that take Xolair injections and

never had

> > > they had a problem. Take a deep breath, count your blessings for

being

> > > approved for Xolair and know that you'll soon be on your way to a

normal life

> > > again. I know it's scary but once you're over the hump of getting

the

> > > injections, you'll be great We're all here for you for any

questions you

> >

> > > might have!

> > >

> > > My very best to all of you,

> > >

> > >

> > >

> > >

> > >

> > > __________________________________________________________

> > > ______________

> > >

> > >

> > >

> > > Hi ,

> > >

> > > I am your neighbor in northwest Arkansas. I was the first person in

the

> > > state to get Xolair in 2003.

> > >

> > > I had been on 40 mg of Prednisone a day for years and was tearing up

my

> > > body. It had made me Type II diabetic, bi polar II, gain up to 210

pounds,

> > > cataracts, and the disks in my neck were effected so bad that I had

to have

> > > two fusion surgeries. I was at my wits end with steroids and was in

> > > desperate need of help.

> > >

> > > Prednisone is the evil drug NOT xolair!! I know that for a fact!!

> > >

> > > Xolair was completely new in 2003 and I had no websites to go to for

> > > advice so I started this one.

> > >

> > > I (without hesitation)told my doctor " Yes, please, anything to get

me off

> > > prednisone. " I can honestly say that Xolair saved my life.

> > >

> > > I am sure that many others will tell you the same thing in this

group.

> > >

> > > Doug

> > > Group founder

> > > Breathing down to his toes WITHOUT Prednisone )

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > > [Non-text portions of this message have been removed]

> > >

> >

> >

> >

> >

> >

> >

> > [Non-text portions of this message have been removed]

> >

>

>

[Non-text portions of this message have been removed]

[Guest guest]

> >

> > I'm about to begin xolair and I asked my allergist about the anaphalaxsis

issue. He said xolair is SAFER than traditional allergy immunotherapy and

that's why it can be given even during asthma flare ups. He said allergy

immunotherapy has been around for a very long time but, if the FDA had to

approave it now, it probably wouldn't be approved. He said xolair is definitely

safer than continued prednisone use. He's a prominent allergist in Boston and

is doing a study on xolair use in people with chronic hives.

> >

> > By the way (group owners), I keep having to re-join this group even though

I've done so several times already in the past few months. Please fix this.

Thanks.

> >

> > -- Tzarina

>

>

> Tzarina,

>

> Next time this happens email me and I will try to find what the problem is.

uca79iii@...

>

> Doug

> Group founder

>

[Guest guest]

Hi czarina, can you please send me the MD info that is doing the study? My son

is16 and suffers with angioedema of his lips 2 to 3 times a day, in addition to

asthma and food and environmental allergies. The angioedema happens at all times

and even wakes him up when he is sleeping! The only thing that helps is 25 to

50 mg of Benedryl and it is so sedating! He takes high doses of antihistamines

and Alvesco for his asthma. He has taken 2 injections of Xolair the past 2

months with no side effects. He just says he's more tired after the shots. Does

anyone know how long it takes for the xolair to work for angioedema? We have

tried many things and have gone to many specialists! I would like him to have

1 day free from the angioedema and benedryl!! Even 8 hours if a day would be

good!

Thanks ,Diane

Sent from my iPhone

[Guest guest]

I am not an expert, but was told 6-12 months for full effect.

Sent via BlackBerry from T-Mobile

-----Original Message-----

From: " anagnos19 " <anagnos19@...>

Sender:

Date: Fri, 11 Mar 2011 16:10:28

< >

Reply-

Subject: Re: [ ]Shock? DOUG AND ADDY??

> >

> > I'm about to begin xolair and I asked my allergist about the anaphalaxsis

issue. He said xolair is SAFER than traditional allergy immunotherapy and

that's why it can be given even during asthma flare ups. He said allergy

immunotherapy has been around for a very long time but, if the FDA had to

approave it now, it probably wouldn't be approved. He said xolair is definitely

safer than continued prednisone use. He's a prominent allergist in Boston and

is doing a study on xolair use in people with chronic hives.

> >

> > By the way (group owners), I keep having to re-join this group even though

I've done so several times already in the past few months. Please fix this.

Thanks.

> >

> > -- Tzarina

>

>

> Tzarina,

>

> Next time this happens email me and I will try to find what the problem is.

uca79iii@...

>

> Doug

> Group founder

>

[Guest guest]

Diane, I am so sorry your son has such severe asthma and allergies. It took me

about 3-4 months to start to feel the full effects of the Xolair. Just keep him

on it and the change maybe gradual but it will keep building. I can only

imagine how upsetting it is for him to have so many episodes. I use to have

hives all the time. I could hang a plastic grocery bag on my arm and I will have

hives in that spot. I lived in Arkansas when mine first began and I use to take

Dristan (an old antihistamine) then the doctor gave me Seldane (an old name for

Allegra). The doctors there did not know anything about Samter's and they

called my polyps severe sinus infections. It has been a difficult journey of

almost 35 year with the Samter's coming on in layers but with the Xolair I am

actually living my best time.

----- Original Message -----

From: Diane Anagnostopoulos <anagnos19@...>

xolair users < >

Sent: Fri, 11 Mar 2011 16:30:50 -0000 (UTC)

Subject: [ ] Re: Shock? DOUG AND ADDY??

Hi czarina, can you please send me the MD info that is doing the study? My son

is16 and suffers with angioedema of his lips 2 to 3 times a day, in addition to

asthma and food and environmental allergies. The angioedema happens at all times

and even wakes him up when he is sleeping! The only thing that helps is 25 to

50 mg of Benedryl and it is so sedating! He takes high doses of antihistamines

and Alvesco for his asthma. He has taken 2 injections of Xolair the past 2

months with no side effects. He just says he's more tired after the shots. Does

anyone know how long it takes for the xolair to work for angioedema? We have

tried many things and have gone to many specialists! I would like him to have

1 day free from the angioedema and benedryl!! Even 8 hours if a day would be

good!

Thanks ,Diane

Sent from my iPhone

[Guest guest]

Thank you... Another dose of Xolair is due this weekend...

>

> Diane, I am so sorry your son has such severe asthma and allergies. It took

me about 3-4 months to start to feel the full effects of the Xolair. Just keep

him on it and the change maybe gradual but it will keep building. I can only

imagine how upsetting it is for him to have so many episodes. I use to have

hives all the time. I could hang a plastic grocery bag on my arm and I will have

hives in that spot. I lived in Arkansas when mine first began and I use to take

Dristan (an old antihistamine) then the doctor gave me Seldane (an old name for

Allegra). The doctors there did not know anything about Samter's and they

called my polyps severe sinus infections. It has been a difficult journey of

almost 35 year with the Samter's coming on in layers but with the Xolair I am

actually living my best time.

>

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

> From: Diane Anagnostopoulos <anagnos19@...>

> xolair users < >

> Sent: Fri, 11 Mar 2011 16:30:50 -0000 (UTC)

> Subject: [ ] Re: Shock? DOUG AND ADDY??

>

>

>

>

>

> Hi czarina, can you please send me the MD info that is doing the study? My

son is16 and suffers with angioedema of his lips 2 to 3 times a day, in

addition to asthma and food and environmental allergies. The angioedema happens

at all times and even wakes him up when he is sleeping! The only thing that

helps is 25 to 50 mg of Benedryl and it is so sedating! He takes high doses of

antihistamines and Alvesco for his asthma. He has taken 2 injections of Xolair

the past 2 months with no side effects. He just says he's more tired after the

shots. Does anyone know how long it takes for the xolair to work for angioedema?

We have tried many things and have gone to many specialists! I would like him

to have 1 day free from the angioedema and benedryl!! Even 8 hours if a day

would be good!

>

> Thanks ,Diane

>

>

> Sent from my iPhone

>

>

>

>