Re: xolair response fluctuation

[Guest guest]

have you had him checked for both silent reflux and gerd?

i don't know but a decrease from 10 shots to 4 of solumedrol sounds like an

improvement to me.

it takes months to tell is xolair is working at all.

leigh

________________________________

From: mauireen14 <mauireen14@...>

Sent: Tuesday, July 21, 2009 3:56:37 AM

Subject: [ ] xolair response fluctuation

 

my husband got his 3rd xolair shots july 6th. he had no response after the 1st

shots, a small good response after the 2nd shots. after the 3rd shots, he seems

to be backsliding. i know most people have posted that their improvement has

been very gradual. we were expecting slow improvement & are disappointed at this

backslide this month. he got a total of 10 solu medrol injections in may after

the 1st xolair shots. after the 2nd xolair shots in june, he only needed a total

of 2 solu medrol injections (on the 26th & 27th days after the 2nd xolair

shots). so far this month he has gotten 4 solu medrol injections and we have

over a week left of july.

he told the pulmonologist that he has been coughing phlegm this month & asked if

he had an infection. she said no because the phlegm isn't greenish or yellowish.

4 days later at urgent care, the dr said the pulmonologist is wrong, that

according to recent studies, sputum color is not always that significant & that

he does have an infection. he put him on an oral antibiotic augmentine. it seems

to be helping the cough/phlegm.

we have air filters that are also ionizers, do any of you react negatively to

ionized air? we have had these filters for months, my husband doesn't think they

are causing a problem.

my husband also has a neurological disorder (pls) in the family of als that

affects his ability to speak & swallow. it may also be affecting his chest

muscles and his ability to breath & be causing some aspiration issues. his

shortness of breath always responds to corticosteroids, the neurologists all say

his pls is not autoimmune & will not respond to corticosteroids. the

pulmonologist says she thinks something more than just asthma is at play. very

frustrating! ! my husband believes it is just asthma as he has had asthma his

whole life & it feels like asthma.

[Guest guest]

he was checked & he doesn't have acid reflux or gerds.  he has problems

speaking/swallowing due to his neurological problem.  you're right about the

improvement from month 1.  we are just disappointed that he got worse in month

three compared to month 2.  we were hoping for a slow improvement.  he has

numerous medical problems & we are really anxious for a treatment for some of

his ailments since there is no real treatment for his neurological problem.

________________________________

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

Sent: Tuesday, July 21, 2009 9:41:15 AM

Subject: Re: [ ] xolair response fluctuation

 

have you had him checked for both silent reflux and gerd?

i don't know but a decrease from 10 shots to 4 of solumedrol sounds like an

improvement to me.

it takes months to tell is xolair is working at all.

leigh

____________ _________ _________ __

From: mauireen14 <mauireen14 (DOT) com>

Sent: Tuesday, July 21, 2009 3:56:37 AM

Subject: [ ] xolair response fluctuation

 

my husband got his 3rd xolair shots july 6th. he had no response after the 1st

shots, a small good response after the 2nd shots. after the 3rd shots, he seems

to be backsliding. i know most people have posted that their improvement has

been very gradual. we were expecting slow improvement & are disappointed at this

backslide this month. he got a total of 10 solu medrol injections in may after

the 1st xolair shots. after the 2nd xolair shots in june, he only needed a total

of 2 solu medrol injections (on the 26th & 27th days after the 2nd xolair

shots). so far this month he has gotten 4 solu medrol injections and we have

over a week left of july.

he told the pulmonologist that he has been coughing phlegm this month & asked if

he had an infection. she said no because the phlegm isn't greenish or yellowish.

4 days later at urgent care, the dr said the pulmonologist is wrong, that

according to recent studies, sputum color is not always that significant & that

he does have an infection. he put him on an oral antibiotic augmentine. it seems

to be helping the cough/phlegm.

we have air filters that are also ionizers, do any of you react negatively to

ionized air? we have had these filters for months, my husband doesn't think they

are causing a problem.

my husband also has a neurological disorder (pls) in the family of als that

affects his ability to speak & swallow. it may also be affecting his chest

muscles and his ability to breath & be causing some aspiration issues. his

shortness of breath always responds to corticosteroids, the neurologists all say

his pls is not autoimmune & will not respond to corticosteroids. the

pulmonologist says she thinks something more than just asthma is at play. very

frustrating! ! my husband believes it is just asthma as he has had asthma his

whole life & it feels like asthma.

[Guest guest]

I agree with Leigh - 10 shots to 4 seems like an improvement to me.

I don't use ionizers. I've forgotten why they're not recommended for folks with

allegies. You could probably google that.

Please let us know how things go.

Addy

-- In , Maureen Keller <mauireen14@...> wrote:

>

> he was checked & he doesn't have acid reflux or gerds.  he has problems

speaking/swallowing due to his neurological problem.  you're right about the

improvement from month 1.  we are just disappointed that he got worse in month

three compared to month 2.  we were hoping for a slow improvement.  he has

numerous medical problems & we are really anxious for a treatment for some of

his ailments since there is no real treatment for his neurological problem.

>

>

>

>

> ________________________________

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

>

> Sent: Tuesday, July 21, 2009 9:41:15 AM

> Subject: Re: [ ] xolair response fluctuation

>

>  

> have you had him checked for both silent reflux and gerd?

> i don't know but a decrease from 10 shots to 4 of solumedrol sounds like an

improvement to me.

> it takes months to tell is xolair is working at all.

> leigh

>

> ____________ _________ _________ __

> From: mauireen14 <mauireen14 (DOT) com>

>

> Sent: Tuesday, July 21, 2009 3:56:37 AM

> Subject: [ ] xolair response fluctuation

>

>  

> my husband got his 3rd xolair shots july 6th. he had no response after the 1st

shots, a small good response after the 2nd shots. after the 3rd shots, he seems

to be backsliding. i know most people have posted that their improvement has

been very gradual. we were expecting slow improvement & are disappointed at this

backslide this month. he got a total of 10 solu medrol injections in may after

the 1st xolair shots. after the 2nd xolair shots in june, he only needed a total

of 2 solu medrol injections (on the 26th & 27th days after the 2nd xolair

shots). so far this month he has gotten 4 solu medrol injections and we have

over a week left of july.

> he told the pulmonologist that he has been coughing phlegm this month & asked

if he had an infection. she said no because the phlegm isn't greenish or

yellowish. 4 days later at urgent care, the dr said the pulmonologist is wrong,

that according to recent studies, sputum color is not always that significant &

that he does have an infection. he put him on an oral antibiotic augmentine. it

seems to be helping the cough/phlegm.

> we have air filters that are also ionizers, do any of you react negatively to

ionized air? we have had these filters for months, my husband doesn't think they

are causing a problem.

> my husband also has a neurological disorder (pls) in the family of als that

affects his ability to speak & swallow. it may also be affecting his chest

muscles and his ability to breath & be causing some aspiration issues. his

shortness of breath always responds to corticosteroids, the neurologists all say

his pls is not autoimmune & will not respond to corticosteroids. the

pulmonologist says she thinks something more than just asthma is at play. very

frustrating! ! my husband believes it is just asthma as he has had asthma his

whole life & it feels like asthma.

>

>

[Guest guest]

we will try to look at the big picture & not look for improvement necessarily

month to month.  will keep posting on his progress.

maureen k.

________________________________

From: pyle456 <jamcculloch2@...>

Sent: Tuesday, July 21, 2009 8:27:35 PM

Subject: [ ] Re: xolair response fluctuation

 

I agree with Leigh - 10 shots to 4 seems like an improvement to me.

I don't use ionizers. I've forgotten why they're not recommended for folks with

allegies. You could probably google that.

Please let us know how things go.

Addy

-- In , Maureen Keller <mauireen14@ ...> wrote:

>

> he was checked & he doesn't have acid reflux or gerds.  he has problems

speaking/swallowing due to his neurological problem.  you're right about the

improvement from month 1.  we are just disappointed that he got worse in month

three compared to month 2.  we were hoping for a slow improvement.  he has

numerous medical problems & we are really anxious for a treatment for some of

his ailments since there is no real treatment for his neurological problem.

>

>

>

>

> ____________ _________ _________ __

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

>

> Sent: Tuesday, July 21, 2009 9:41:15 AM

> Subject: Re: [ ] xolair response fluctuation

>

>  

> have you had him checked for both silent reflux and gerd?

> i don't know but a decrease from 10 shots to 4 of solumedrol sounds like an

improvement to me.

> it takes months to tell is xolair is working at all.

> leigh

>

> ____________ _________ _________ __

> From: mauireen14 <mauireen14@ . com>

>

> Sent: Tuesday, July 21, 2009 3:56:37 AM

> Subject: [ ] xolair response fluctuation

>

>  

> my husband got his 3rd xolair shots july 6th. he had no response after the 1st

shots, a small good response after the 2nd shots. after the 3rd shots, he seems

to be backsliding. i know most people have posted that their improvement has

been very gradual. we were expecting slow improvement & are disappointed at this

backslide this month. he got a total of 10 solu medrol injections in may after

the 1st xolair shots. after the 2nd xolair shots in june, he only needed a total

of 2 solu medrol injections (on the 26th & 27th days after the 2nd xolair

shots). so far this month he has gotten 4 solu medrol injections and we have

over a week left of july.

> he told the pulmonologist that he has been coughing phlegm this month & asked

if he had an infection. she said no because the phlegm isn't greenish or

yellowish. 4 days later at urgent care, the dr said the pulmonologist is wrong,

that according to recent studies, sputum color is not always that significant &

that he does have an infection. he put him on an oral antibiotic augmentine. it

seems to be helping the cough/phlegm.

> we have air filters that are also ionizers, do any of you react negatively to

ionized air? we have had these filters for months, my husband doesn't think they

are causing a problem.

> my husband also has a neurological disorder (pls) in the family of als that

affects his ability to speak & swallow. it may also be affecting his chest

muscles and his ability to breath & be causing some aspiration issues. his

shortness of breath always responds to corticosteroids, the neurologists all say

his pls is not autoimmune & will not respond to corticosteroids. the

pulmonologist says she thinks something more than just asthma is at play. very

frustrating! ! my husband believes it is just asthma as he has had asthma his

whole life & it feels like asthma.

>

>