Re: reaction??

[Guest guest]

It's far more likely it's a coincidence, but it's not impossibile that her

symptoms were brought on by Xolair.

Why it's a coincidence: you've told us she qualifies for the maximum dose, which

means she has plenty of free IgE out there waiting to bind to any allergen, and

we are smack dab in allergy season. Also, y'all were in the doc's office around

a bunch of sick people. I can't count the times I've gotten sick AFTER a doc

visit (and yes, with onset of s ymptoms that quick).

I would think that if it were a reaction, you would have seen a greater allergic

reaction that moved more quickly, with you needing to take her to urgent care by

Tuesday night, instead of by Friday night. But again, I'm not a doc, just a very

experienced, very allergic patient.

I've also been on Xolair AND on prednisone any number of times.

Talk to her doctor about it. On the continuum of decisions, you, of course, know

that you have the option to take her off Xolair altogether, try her at a lower

dose, or try the same dose at 4 weeks instead of 2 (I think you said she's

supposed to get it every 2 weeks), or try the same dose again as scheduled.

If it were me, I would try a lower dose, and then if I again had symptoms appear

within 24-48 hours, I'd discontinue out of an abundance of caution. I don't know

that I would make the same decision if it came to my child.

See what your allergist says. Xolair has been out long enough that he can

probably recommend a course of action fairly confidently.

Above all, don't beat yourself up about this. You are a GREAT mom, you make

very carefully thought out decisions for your daughter and family, and you're a

wonderful advocate for your daughter.

Addy

Group co-owner

>

> my daughter received her first shot(she gets maximum, 3 every two weeks) last

Monday. Her asthma started flaring a little that night and increasing symptoms,

but controlled with her nebulizer. Friday night her chest felt tight and Sat.

the nebi wasnt working that good. Took her to urgent care and dr. said she had

bronchitis.

>

> is this a possible reaction or just a coincendence?

> is it possible she doesnt have bronchitis but her asthma is worse because of

the xolair?

> she is really on the xolair more for skin(atopic derm) then asthma.

>

> also he put her on prednisone, tapered dose. I am guessing this is ok to be

on while on xolair because I have been on it.

>

> I will call her allergist/asthma dr. Monday but would like your opinion.

>

> I am on low dose xolair and have never had any problems.

> thanks. jean

>

[Guest guest]

>

> my daughter received her first shot(she gets maximum, 3 every two weeks) last

Monday. Her asthma started flaring a little that night and increasing symptoms,

but controlled with her nebulizer. Friday night her chest felt tight and Sat.

the nebi wasnt working that good. Took her to urgent care and dr. said she had

bronchitis.

>

> is this a possible reaction or just a coincendence?

> is it possible she doesnt have bronchitis but her asthma is worse because of

the xolair?

> she is really on the xolair more for skin(atopic derm) then asthma.

>

> also he put her on prednisone, tapered dose. I am guessing this is ok to be

on while on xolair because I have been on it.

>

> I will call her allergist/asthma dr. Monday but would like your opinion.

>

> I am on low dose xolair and have never had any problems.

> thanks. jean

>

These are really good questions for you and your doctor to discuss.

I am sorry that you two are going through such problems. Rest assured, we in the

group are concerned too. Please keep us updated

Doug

Group founder

[Guest guest]

hi jean,

my gut feeling is that your daughters bronchitis is most likely coincidence.

with all the allergies in the air, it seems that people, even those who do not

get frequent asthma symptoms, have had problems with allergies that spiraled

around until they ended up with bronchitis....at least, thats how it is in my

area.

i'm also guessing its a coincidence b/c of the time you describe. if it were due

to xolair, i would think that within 24 hours, you would have had no choice but

to seek the dr at the urgent care.

obvoiously, i'm not a dr, just pretty well versed in xolair and such. please

don't beat yourself up over this. i know this was a hard decision for you. i

would inform the dr, and maybe try doing a baseline peak flow for a week (when

she's not having breathing/bronchitis issues) and continue to monitor for 2

weeks after her next injections. then you have something concrete to compare.

prednisone, while we hate it, is fine with xolair.

hope she feels btter fast. please keep us informed on what happens!

hugs

heather

>

> my daughter received her first shot(she gets maximum, 3 every two weeks) last

Monday. Her asthma started flaring a little that night and increasing symptoms,

but controlled with her nebulizer. Friday night her chest felt tight and Sat.

the nebi wasnt working that good. Took her to urgent care and dr. said she had

bronchitis.

>

> is this a possible reaction or just a coincendence?

> is it possible she doesnt have bronchitis but her asthma is worse because of

the xolair?

> she is really on the xolair more for skin(atopic derm) then asthma.

>

> also he put her on prednisone, tapered dose. I am guessing this is ok to be

on while on xolair because I have been on it.

>

> I will call her allergist/asthma dr. Monday but would like your opinion.

>

> I am on low dose xolair and have never had any problems.

> thanks. jean

>

[Guest guest]

My asthma and allergies get worse after the xolair shot. I've only had 4 shots,

so I am giving it some time before making any decision in regards to

discontinuing the xolair, but it is frustrating because after the shot I am

worse off for a couple of weeks and using my rescue inhaler way too much! I

would try the shot one more time if it were my child and just be prepared that

it might happen again and if it does, I'd stop using it. This way you will know

either way if your child is having a reaction or not. So sorry your child is

not feeling well -

[Guest guest]

>

> My asthma and allergies get worse after the xolair shot. I've only had 4

shots, so I am giving it some time before making any decision in regards to

discontinuing the xolair, but it is frustrating because after the shot I am

worse off for a couple of weeks and using my rescue inhaler way too much! I

would try the shot one more time if it were my child and just be prepared that

it might happen again and if it does, I'd stop using it. This way you will know

either way if your child is having a reaction or not. So sorry your child is

not feeling well -

>

Yes, I always have asthma after the shots but then I remember that xolair is not

an instant medication like an inhaler. Four shots is not enough time to tell if

it is working or not. Some people do see results quickly but others like me it

takes up to a year or more.

Talk to your doctor.

I asked mine to take me off xolair after 6 months with no results. He talked me

into staying the course and after a year, I got better. NO pred for me anymore

and I have a new life thanks to Xolair

Keep us posted

Doug

Group founder

[Guest guest]

Thanks everyone for your support and kind words. I will call her dr. Monday and

let him know what is going on. I agree that if it were a reaction it prob.

would have happened sooner, She did show symptoms of her asthma symptoms

increasing soon after the shot but because it was controlled with her inhalers

and because tree pollen is high and she is a very allergic kid(IgE, 5,981)I

thought it was this. The bronchitis took me by surprise because I can usually

tell when she is getting sick and get her on meds. before her asthma gets this

bad.

my dd is prone to catching things quickly so she might of got germs from the

drs. office(we were there over 3 hrs) and there was a kid coughing there so it

is possible.

her skin(atopic dermatitis) symptoms increased a little that day also but I

figured it was the stress of getting the shots, and with my dd her skin symptoms

increase/decreass all the time so it is hard to tell. Her AD didnt continue to

get worse so this is a possitive sign.

Addy, you mention a few things we could do ie: lowering dose, changing how

often, etc. I had mention this to the nurse at the doctors office before we

started. I ask if we could start at a lower dose to leesen the chance of

reaction and she told me it wouldn't matter. that if she was going to have a

reaction it would be at any dose. Is she wrong. I hate when I call there

because they never give me the doctor just this nurse. I will insist on talking

to the doctor when I call Monday. If you can please let me know if the nurses

statement is incorrect as far as you know. thank you. I will let everyone know

how things are going and what the dr. says.

Ok thanks again everyone. I hope everyone is enjoying this Mother's Day and

things are going good for you. JEan

>

>

>

> It's far more likely it's a coincidence, but it's not impossibile that her

symptoms were brought on by Xolair.

>

> Why it's a coincidence: you've told us she qualifies for the maximum dose,

which means she has plenty of free IgE out there waiting to bind to any

allergen, and we are smack dab in allergy season. Also, y'all were in the doc's

office around a bunch of sick people. I can't count the times I've gotten sick

AFTER a doc visit (and yes, with onset of s ymptoms that quick).

>

> I would think that if it were a reaction, you would have seen a greater

allergic reaction that moved more quickly, with you needing to take her to

urgent care by Tuesday night, instead of by Friday night. But again, I'm not a

doc, just a very experienced, very allergic patient.

>

> I've also been on Xolair AND on prednisone any number of times.

>

> Talk to her doctor about it. On the continuum of decisions, you, of course,

know that you have the option to take her off Xolair altogether, try her at a

lower dose, or try the same dose at 4 weeks instead of 2 (I think you said she's

supposed to get it every 2 weeks), or try the same dose again as scheduled.

>

> If it were me, I would try a lower dose, and then if I again had symptoms

appear within 24-48 hours, I'd discontinue out of an abundance of caution. I

don't know that I would make the same decision if it came to my child.

>

> See what your allergist says. Xolair has been out long enough that he can

probably recommend a course of action fairly confidently.

>

> Above all, don't beat yourself up about this. You are a GREAT mom, you make

very carefully thought out decisions for your daughter and family, and you're a

wonderful advocate for your daughter.

>

> Addy

> Group co-owner

>

>

>

> >

> > my daughter received her first shot(she gets maximum, 3 every two weeks)

last Monday. Her asthma started flaring a little that night and increasing

symptoms, but controlled with her nebulizer. Friday night her chest felt tight

and Sat. the nebi wasnt working that good. Took her to urgent care and dr. said

she had bronchitis.

> >

> > is this a possible reaction or just a coincendence?

> > is it possible she doesnt have bronchitis but her asthma is worse because of

the xolair?

> > she is really on the xolair more for skin(atopic derm) then asthma.

> >

> > also he put her on prednisone, tapered dose. I am guessing this is ok to be

on while on xolair because I have been on it.

> >

> > I will call her allergist/asthma dr. Monday but would like your opinion.

> >

> > I am on low dose xolair and have never had any problems.

> > thanks. jean

> >

>

[Guest guest]

i wonder if somethng else is going on like spring pollens, any infections you

may have, etc.

________________________________

From: uca79iii <uca79iii@...>

Sent: Sunday, May 10, 2009 2:03:51 PM

Subject: [ ] Re: reaction??

>

> My asthma and allergies get worse after the xolair shot. I've only had 4

shots, so I am giving it some time before making any decision in regards to

discontinuing the xolair, but it is frustrating because after the shot I am

worse off for a couple of weeks and using my rescue inhaler way too much! I

would try the shot one more time if it were my child and just be prepared that

it might happen again and if it does, I'd stop using it. This way you will know

either way if your child is having a reaction or not. So sorry your child is

not feeling well -

>

Yes, I always have asthma after the shots but then I remember that xolair is not

an instant medication like an inhaler. Four shots is not enough time to tell if

it is working or not. Some people do see results quickly but others like me it

takes up to a year or more.

Talk to your doctor.

I asked mine to take me off xolair after 6 months with no results. He talked me

into staying the course and after a year, I got better. NO pred for me anymore

and I have a new life thanks to Xolair

Keep us posted

Doug

Group founder

[Guest guest]

I know when I was doing really well on Xolair, my doc actually tried lowering my

dose (no, I don't know why). I took a lower dose for about 3 months and ended up

about as sick as I've ever been and he said, " well, looks like you'll need to be

on max dose until the next new thing comes along. "

While there are parameters of dosing, it is within the doctor's discretion to

make changes. I think Ron takes a " half a dose " at the two week mark and his

regular dose at the 4 week mark. That was a change he and his doctor made - an

increase - when the recommended dosage was insufficient for him. (I think it was

Ron - it might be another group member.)

Talk to the doctor, not the nurse. If he doesn't give you an answer you feel

comfortable with, ask him why, don't let it drop.

I'm really lucky - my doc's nurse won't tell me anything without talking to the

doc about it first, and she always talks to the doc about it (whatever it is).

Good luck, let us know, and so on,

Addy

> > >

> > > my daughter received her first shot(she gets maximum, 3 every two weeks)

last Monday. Her asthma started flaring a little that night and increasing

symptoms, but controlled with her nebulizer. Friday night her chest felt tight

and Sat. the nebi wasnt working that good. Took her to urgent care and dr. said

she had bronchitis.

> > >

> > > is this a possible reaction or just a coincendence?

> > > is it possible she doesnt have bronchitis but her asthma is worse because

of the xolair?

> > > she is really on the xolair more for skin(atopic derm) then asthma.

> > >

> > > also he put her on prednisone, tapered dose. I am guessing this is ok to

be on while on xolair because I have been on it.

> > >

> > > I will call her allergist/asthma dr. Monday but would like your opinion.

> > >

> > > I am on low dose xolair and have never had any problems.

> > > thanks. jean

> > >

> >

>

[Guest guest]

Just my little suggestion here but have her to wear a mask in any medical

situation.  I wear an n95 and I could care less who stares at me.

________________________________

From: gigles_1955 <fgigles55@...>

Sent: Sunday, May 10, 2009 5:33:55 PM

Subject: [ ] Re: reaction??

Thanks everyone for your support and kind words. I will call her dr. Monday and

let him know what is going on. I agree that if it were a reaction it prob. would

have happened sooner, She did show symptoms of her asthma symptoms increasing

soon after the shot but because it was controlled with her inhalers and because

tree pollen is high and she is a very allergic kid(IgE, 5,981)I thought it was

this. The bronchitis took me by surprise because I can usually tell when she is

getting sick and get her on meds. before her asthma gets this bad.

my dd is prone to catching things quickly so she might of got germs from the

drs. office(we were there over 3 hrs) and there was a kid coughing there so it

is possible.

her skin(atopic dermatitis) symptoms increased a little that day also but I

figured it was the stress of getting the shots, and with my dd her skin symptoms

increase/decreass all the time so it is hard to tell. Her AD didnt continue to

get worse so this is a possitive sign.

Addy, you mention a few things we could do ie: lowering dose, changing how

often, etc. I had mention this to the nurse at the doctors office before we

started. I ask if we could start at a lower dose to leesen the chance of

reaction and she told me it wouldn't matter. that if she was going to have a

reaction it would be at any dose. Is she wrong. I hate when I call there because

they never give me the doctor just this nurse. I will insist on talking to the

doctor when I call Monday. If you can please let me know if the nurses statement

is incorrect as far as you know. thank you. I will let everyone know how things

are going and what the dr. says.

Ok thanks again everyone. I hope everyone is enjoying this Mother's Day and

things are going good for you. JEan

>

>

>

> It's far more likely it's a coincidence, but it's not impossibile that her

symptoms were brought on by Xolair.

>

> Why it's a coincidence: you've told us she qualifies for the maximum dose,

which means she has plenty of free IgE out there waiting to bind to any

allergen, and we are smack dab in allergy season. Also, y'all were in the doc's

office around a bunch of sick people. I can't count the times I've gotten sick

AFTER a doc visit (and yes, with onset of s ymptoms that quick).

>

> I would think that if it were a reaction, you would have seen a greater

allergic reaction that moved more quickly, with you needing to take her to

urgent care by Tuesday night, instead of by Friday night. But again, I'm not a

doc, just a very experienced, very allergic patient.

>

> I've also been on Xolair AND on prednisone any number of times.

>

> Talk to her doctor about it. On the continuum of decisions, you, of course,

know that you have the option to take her off Xolair altogether, try her at a

lower dose, or try the same dose at 4 weeks instead of 2 (I think you said she's

supposed to get it every 2 weeks), or try the same dose again as scheduled.

>

> If it were me, I would try a lower dose, and then if I again had symptoms

appear within 24-48 hours, I'd discontinue out of an abundance of caution. I

don't know that I would make the same decision if it came to my child.

>

> See what your allergist says. Xolair has been out long enough that he can

probably recommend a course of action fairly confidently.

>

> Above all, don't beat yourself up about this. You are a GREAT mom, you make

very carefully thought out decisions for your daughter and family, and you're a

wonderful advocate for your daughter.

>

> Addy

> Group co-owner

>

>

>

> >

> > my daughter received her first shot(she gets maximum, 3 every two weeks)

last Monday. Her asthma started flaring a little that night and increasing

symptoms, but controlled with her nebulizer. Friday night her chest felt tight

and Sat. the nebi wasnt working that good. Took her to urgent care and dr. said

she had bronchitis.

> >

> > is this a possible reaction or just a coincendence?

> > is it possible she doesnt have bronchitis but her asthma is worse because of

the xolair?

> > she is really on the xolair more for skin(atopic derm) then asthma.

> >

> > also he put her on prednisone, tapered dose. I am guessing this is ok to be

on while on xolair because I have been on it.

> >

> > I will call her allergist/asthma dr. Monday but would like your opinion.

> >

> > I am on low dose xolair and have never had any problems.

> > thanks. jean

> >

>

[Guest guest]

Thanks Addy.

Im going to ask the dr. for dosing suggestions and possible adjustments. It

may not even be the xolair but no one really explain much about the xolair, what

to expect, about dosing, except that the dose went by your weight and IgE level.

I only know about xolair because I am on it and from you guys. For me my doctor

gave me leaflets to read, went over pretty much eveything I needed to know.

Maybe because my daughters allergist knows I am on xolair he figured I knew

everything already but still. My daughters appt. isnt for another week so I am

going to try and get one before then to talk to him. If I cant I will insist he

calls me and will ask him about dosing and other things.

I should have ask more questions but to be honest I was basing it on my

experience with xolair. I do know what to do if she had a severe reactions, but

I should have though ahead to what if's, like what if had other side effects

like resp. infections.

ok thanks again for your help. I'll keep in touch. Jean

,

> I know when I was doing really well on Xolair, my doc actually tried lowering

my dose (no, I don't know why). I took a lower dose for about 3 months and ended

up about as sick as I've ever been and he said, " well, looks like you'll need to

be on max dose until the next new thing comes along. "

>

> While there are parameters of dosing, it is within the doctor's discretion to

make changes. I think Ron takes a " half a dose " at the two week mark and his

regular dose at the 4 week mark. That was a change he and his doctor made - an

increase - when the recommended dosage was insufficient for him. (I think it was

Ron - it might be another group member.)

>

> Talk to the doctor, not the nurse. If he doesn't give you an answer you feel

comfortable with, ask him why, don't let it drop.

>

> I'm really lucky - my doc's nurse won't tell me anything without talking to

the doc about it first, and she always talks to the doc about it (whatever it

is).

>

> Good luck, let us know, and so on,

>

> Addy

>

>

>

>

> > > >

> > > > my daughter received her first shot(she gets maximum, 3 every two weeks)

last Monday. Her asthma started flaring a little that night and increasing

symptoms, but controlled with her nebulizer. Friday night her chest felt tight

and Sat. the nebi wasnt working that good. Took her to urgent care and dr. said

she had bronchitis.

> > > >

> > > > is this a possible reaction or just a coincendence?

> > > > is it possible she doesnt have bronchitis but her asthma is worse

because of the xolair?

> > > > she is really on the xolair more for skin(atopic derm) then asthma.

> > > >

> > > > also he put her on prednisone, tapered dose. I am guessing this is ok

to be on while on xolair because I have been on it.

> > > >

> > > > I will call her allergist/asthma dr. Monday but would like your opinion.

> > > >

> > > > I am on low dose xolair and have never had any problems.

> > > > thanks. jean

> > > >

> > >

> >

>

[Guest guest]

good idea although I dont know if she will wear one. I'm also going to ask if

we can spend the 2 hours in an examination room if available or even outside if

nice out. The door to the office is right there by the outside door so what

would be the difference. jean

>

> Just my little suggestion here but have her to wear a mask in any medical

situation.  I wear an n95 and I could care less who stares at me.

>

>

>

>

> ________________________________

> From: gigles_1955 <fgigles55@...>

>

> Sent: Sunday, May 10, 2009 5:33:55 PM

> Subject: [ ] Re: reaction??

>

>

>

>

>

> Thanks everyone for your support and kind words. I will call her dr. Monday

and let him know what is going on. I agree that if it were a reaction it prob.

would have happened sooner, She did show symptoms of her asthma symptoms

increasing soon after the shot but because it was controlled with her inhalers

and because tree pollen is high and she is a very allergic kid(IgE, 5,981)I

thought it was this. The bronchitis took me by surprise because I can usually

tell when she is getting sick and get her on meds. before her asthma gets this

bad.

>

> my dd is prone to catching things quickly so she might of got germs from the

drs. office(we were there over 3 hrs) and there was a kid coughing there so it

is possible.

>

> her skin(atopic dermatitis) symptoms increased a little that day also but I

figured it was the stress of getting the shots, and with my dd her skin symptoms

increase/decreass all the time so it is hard to tell. Her AD didnt continue to

get worse so this is a possitive sign.

>

> Addy, you mention a few things we could do ie: lowering dose, changing how

often, etc. I had mention this to the nurse at the doctors office before we

started. I ask if we could start at a lower dose to leesen the chance of

reaction and she told me it wouldn't matter. that if she was going to have a

reaction it would be at any dose. Is she wrong. I hate when I call there because

they never give me the doctor just this nurse. I will insist on talking to the

doctor when I call Monday. If you can please let me know if the nurses statement

is incorrect as far as you know. thank you. I will let everyone know how things

are going and what the dr. says.

>

> Ok thanks again everyone. I hope everyone is enjoying this Mother's Day and

things are going good for you. JEan

> >

> >

>

>

> >

> > It's far more likely it's a coincidence, but it's not impossibile that her

symptoms were brought on by Xolair.

> >

> > Why it's a coincidence: you've told us she qualifies for the maximum dose,

which means she has plenty of free IgE out there waiting to bind to any

allergen, and we are smack dab in allergy season. Also, y'all were in the doc's

office around a bunch of sick people. I can't count the times I've gotten sick

AFTER a doc visit (and yes, with onset of s ymptoms that quick).

> >

> > I would think that if it were a reaction, you would have seen a greater

allergic reaction that moved more quickly, with you needing to take her to

urgent care by Tuesday night, instead of by Friday night. But again, I'm not a

doc, just a very experienced, very allergic patient.

> >

> > I've also been on Xolair AND on prednisone any number of times.

> >

> > Talk to her doctor about it. On the continuum of decisions, you, of course,

know that you have the option to take her off Xolair altogether, try her at a

lower dose, or try the same dose at 4 weeks instead of 2 (I think you said she's

supposed to get it every 2 weeks), or try the same dose again as scheduled.

> >

> > If it were me, I would try a lower dose, and then if I again had symptoms

appear within 24-48 hours, I'd discontinue out of an abundance of caution. I

don't know that I would make the same decision if it came to my child.

> >

> > See what your allergist says. Xolair has been out long enough that he can

probably recommend a course of action fairly confidently.

> >

> > Above all, don't beat yourself up about this. You are a GREAT mom, you make

very carefully thought out decisions for your daughter and family, and you're a

wonderful advocate for your daughter.

> >

> > Addy

> > Group co-owner

> >

> >

> >

> > >

> > > my daughter received her first shot(she gets maximum, 3 every two weeks)

last Monday. Her asthma started flaring a little that night and increasing

symptoms, but controlled with her nebulizer. Friday night her chest felt tight

and Sat. the nebi wasnt working that good. Took her to urgent care and dr. said

she had bronchitis.

> > >

> > > is this a possible reaction or just a coincendence?

> > > is it possible she doesnt have bronchitis but her asthma is worse because

of the xolair?

> > > she is really on the xolair more for skin(atopic derm) then asthma.

> > >

> > > also he put her on prednisone, tapered dose. I am guessing this is ok to

be on while on xolair because I have been on it.

> > >

> > > I will call her allergist/asthma dr. Monday but would like your opinion.

> > >

> > > I am on low dose xolair and have never had any problems.

> > > thanks. jean

> > >

> >

>

>

>

>

>

>

>

>