Re: Xolair Excell study results - what are doctors doing

[Guest guest]

>

> I was wondering what the group's experience is with their doctors' reactions

to the preliminary results showing a statistical increase in heart and stroke

frequency with xolair usage. My doctor suggested maybe decreasing the

frequency, though that did not work and I am back on my regular frequency. Are

doctors changing anything at all, reducing dosage, frequency, or do they believe

the results are not significant?

>

I have an appointment with my cardiologist next month. I will get his take on

this and get back to everyone

Doug

Group founder

On Xolair exactly 6 years

[Guest guest]

Mike said to stay the course.  He thinks thatthe study was flawed in some way.

 Mike McBride

________________________________

From: amram2811 <aramar@...>

Sent: Tuesday, September 1, 2009 4:13:59 PM

Subject: [ ] Xolair Excell study results - what are doctors doing

 

I was wondering what the group's experience is with their doctors' reactions to

the preliminary results showing a statistical increase in heart and stroke

frequency with xolair usage. My doctor suggested maybe decreasing the frequency,

though that did not work and I am back on my regular frequency. Are doctors

changing anything at all, reducing dosage, frequency, or do they believe the

results are not significant?

[Guest guest]

> I was wondering what the group's experience is with their doctors' reactions

to the preliminary results showing a statistical increase in heart and stroke

frequency with xolair usage. My doctor suggested maybe decreasing the

frequency, though that did not work and I am back on my regular frequency. Are

doctors changing anything at all, reducing dosage, frequency, or do they believe

the results are not significant?

Two months ago my pulmonologists suggested also a change in frequency.

Three weeks instead of 3 inj. per 2 weeks.

He however could not give a good explanation for this change. Other then " lets

try it " , and that he heard at a congres.

After I asked him if a lower dosage (2inj/2wks instead of 3inj./2wks) would be a

better idea, he agreed with me. End of sept. I will have a complet physical

examination, and after that we will decide how to proceed. But perhaps the

decision will be postponed after the examination of the cardiologist.

grtz, Marjet

[Guest guest]

Hi

I am up here at the Mayo Clinic and night before last this hotel room dust had

me to the point I could not function so I did something I never did before...I

injected myself with one vial and I much better today.  My dosage day is

tomorrow.  When I get back home I have to find a pulmonologist or allergist who

can help me with increasing frequency or just adjusting my dosing because it

seems that everytime my dose is due, the last 4 or 5 days is HELL x 10 on

earth.  BTW Mayo does not prescribe Xolair.  They participated in the studies

and did not like it.

LMA

From: its_marjet <m.vloedbeld@...>

Subject: [ ] Re: Xolair Excell study results - what are doctors doing

Date: Wednesday, September 2, 2009, 4:46 AM

 

> I was wondering what the group's experience is with their doctors' reactions

to the preliminary results showing a statistical increase in heart and stroke

frequency with xolair usage. My doctor suggested maybe decreasing the

frequency, though that did not work and I am back on my regular frequency. Are

doctors changing anything at all, reducing dosage, frequency, or do they believe

the results are not significant?

Two months ago my pulmonologists suggested also a change in frequency.

Three weeks instead of 3 inj. per 2 weeks.

He however could not give a good explanation for this change. Other then " lets

try it " , and that he heard at a congres.

After I asked him if a lower dosage (2inj/2wks instead of 3inj./2wks) would be a

better idea, he agreed with me. End of sept. I will have a complet physical

examination, and after that we will decide how to proceed. But perhaps the

decision will be postponed after the examination of the cardiologist.

grtz, Marjet

[Guest guest]

Did the Mayo doctors give a reason why they didn't like it? My allergist still

prescribes Xolair as a last ditch thing, but brought up that Mayo didn't find it

useful.

Nan

Sent from my Verizon Wireless BlackBerry

[Guest guest]

Forgot to add, when I was on Xolair, the week before the shot was horrible. My

previous allergist flat out refused to up the dose. I was on the minimal amount.

Go figure.

Those 5 days before are no fun.

Nan

Sent from my Verizon Wireless BlackBerry

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

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

Date: Wed, 2 Sep 2009 05:12:43

< >

Subject: Re: [ ] Re: Xolair Excell study results - what are doctors

doing

Hi

I am up here at the Mayo Clinic and night before last this hotel room dust had

me to the point I could not function so I did something I never did before...I

injected myself with one vial and I much better today.  My dosage day is

tomorrow.  When I get back home I have to find a pulmonologist or allergist who

can help me with increasing frequency or just adjusting my dosing because it

seems that everytime my dose is due, the last 4 or 5 days is HELL x 10 on

earth.  BTW Mayo does not prescribe Xolair.  They participated in the studies

and did not like it.

LMA

From: its_marjet <m.vloedbeld@...>

Subject: [ ] Re: Xolair Excell study results - what are doctors doing

Date: Wednesday, September 2, 2009, 4:46 AM

 

> I was wondering what the group's experience is with their doctors' reactions

to the preliminary results showing a statistical increase in heart and stroke

frequency with xolair usage. My doctor suggested maybe decreasing the

frequency, though that did not work and I am back on my regular frequency. Are

doctors changing anything at all, reducing dosage, frequency, or do they believe

the results are not significant?

Two months ago my pulmonologists suggested also a change in frequency.

Three weeks instead of 3 inj. per 2 weeks.

He however could not give a good explanation for this change. Other then " lets

try it " , and that he heard at a congres.

After I asked him if a lower dosage (2inj/2wks instead of 3inj./2wks) would be a

better idea, he agreed with me. End of sept. I will have a complet physical

examination, and after that we will decide how to proceed. But perhaps the

decision will be postponed after the examination of the cardiologist.

grtz, Marjet

[Guest guest]

Interesting that they participated in the studies and did not like it.  Do they

give any explanation as to why they do not like it?

From: its_marjet <m.vloedbeld@ gmail.com>

Subject: [ ] Re: Xolair Excell study results - what are doctors doing

Date: Wednesday, September 2, 2009, 4:46 AM

 

> I was wondering what the group's experience is with their doctors' reactions

to the preliminary results showing a statistical increase in heart and stroke

frequency with xolair usage. My doctor suggested maybe decreasing the frequency,

though that did not work and I am back on my regular frequency. Are doctors

changing anything at all, reducing dosage, frequency, or do they believe the

results are not significant?

Two months ago my pulmonologists suggested also a change in frequency.

Three weeks instead of 3 inj. per 2 weeks.

He however could not give a good explanation for this change. Other then " lets

try it " , and that he heard at a congres.

After I asked him if a lower dosage (2inj/2wks instead of 3inj./2wks) would be a

better idea, he agreed with me. End of sept. I will have a complet physical

examination, and after that we will decide how to proceed. But perhaps the

decision will be postponed after the examination of the cardiologist.

grtz, Marjet

[Guest guest]

Wondering why Mayo Clinic didn't like Xolair? Did it have to do with side

effects or how well it worked or cost or inconvenience? Have they published

anything about their findings or policy?

I've never been to Mayo but would hope there would be better accomodations for

someone who is that severely allergic.

>

>

> Hi

> I am up here at the Mayo Clinic and night before last this hotel room dust had

me to the point I could not function so I did something I never did before...I

injected myself with one vial and I much better today.  My dosage day is

tomorrow.  When I get back home I have to find a pulmonologist or allergist who

can help me with increasing frequency or just adjusting my dosing because it

seems that everytime my dose is due, the last 4 or 5 days is HELL x 10 on

earth.  BTW Mayo does not prescribe Xolair.  They participated in the studies

and did not like it.

> LMA