Re: another question on xolair for AD

[Guest guest]

I have been on the maximum dose of Xolair, 375 mg every two weeks for

three plus years. I am also on a daily " maintenance dose " of

Prednisone, 20 mg. My Pulmo states he is unconcerned with taking

Prednisone and Xolair together, (he feels Xolair is very safe),

although he would like to see me off Prednisone because of the side

effects and there are many, in my case he does not feel that will be

possible.

Good luck with your daughter, I am hoping for the best for both of you.

Ron

On Mar 9, 2009, at 12:22 PM, gigles_1955 wrote:

> me again. My daughter saw her allergist today who is going to summit

> a request for her to start xolair shots.

> my question is, is it ok to keep her on low dose prednisone for

> awhile until the xolair has a chance to kick in? Her allergist said

> iot would be at least 3 months before she might see any progress(in

> her atopic dermatitis). I know pred. is a nasty drug, but would a

> low dose do a lot of harm(She can stay on 20 mgs and her skin is

> somewhat tollerable).

> I am going to call her allergist and derm. but wanted to know your

> opinion. pls answer asap. thank you so much for all your help. jean

>

>

>

[Guest guest]

Thank you Ron, you make me feel better about this. I hope the best for you

as well. take care. jean

On Mon, Mar 9, 2009 at 5:35 PM, Carpenter <cowtrail@...> wrote:

> I have been on the maximum dose of Xolair, 375 mg every two weeks for

> three plus years. I am also on a daily " maintenance dose " of

> Prednisone, 20 mg. My Pulmo states he is unconcerned with taking

> Prednisone and Xolair together, (he feels Xolair is very safe),

> although he would like to see me off Prednisone because of the side

> effects and there are many, in my case he does not feel that will be

> possible.

>

> Good luck with your daughter, I am hoping for the best for both of you.

>

> Ron

>

> On Mar 9, 2009, at 12:22 PM, gigles_1955 wrote:

>

> > me again. My daughter saw her allergist today who is going to summit

> > a request for her to start xolair shots.

> > my question is, is it ok to keep her on low dose prednisone for

> > awhile until the xolair has a chance to kick in? Her allergist said

> > iot would be at least 3 months before she might see any progress(in

> > her atopic dermatitis). I know pred. is a nasty drug, but would a

> > low dose do a lot of harm(She can stay on 20 mgs and her skin is

> > somewhat tollerable).

> > I am going to call her allergist and derm. but wanted to know your

> > opinion. pls answer asap. thank you so much for all your help. jean

> >

> >

> >

>

>

[Guest guest]

Prednisone is evil candy. After tapering from 20 mg. very slowly down to 13

mg., my new pulmonologist put me on 40mg until he could bronchoscope me and wash

out my lungs. In the past week, my blood sugar has become wild and out of

control, my vision is blurred, I have more moon face and while not sleeping and

have no energy. And guess what? He refused to perform the bronchoscopy today

when he was told that anestheologist is required for me. So prednisone has

raised my blood pressure, caused Cushing's disease, uncontrollable diabetes, a

weight gain of 60 pounds, and lowered my immune system. The longer you are on

Prednisone, the side effects brecome more pronounced.

________________________________

From: Carpenter <cowtrail@...>

Sent: Monday, March 9, 2009 5:35:34 PM

Subject: Re: [ ] another question on xolair for AD

I have been on the maximum dose of Xolair, 375 mg every two weeks for

three plus years. I am also on a daily " maintenance dose " of

Prednisone, 20 mg. My Pulmo states he is unconcerned with taking

Prednisone and Xolair together, (he feels Xolair is very safe),

although he would like to see me off Prednisone because of the side

effects and there are many, in my case he does not feel that will be

possible.

Good luck with your daughter, I am hoping for the best for both of you.

Ron

On Mar 9, 2009, at 12:22 PM, gigles_1955 wrote:

> me again. My daughter saw her allergist today who is going to summit

> a request for her to start xolair shots.

> my question is, is it ok to keep her on low dose prednisone for

> awhile until the xolair has a chance to kick in? Her allergist said

> iot would be at least 3 months before she might see any progress(in

> her atopic dermatitis). I know pred. is a nasty drug, but would a

> low dose do a lot of harm(She can stay on 20 mgs and her skin is

> somewhat tollerable).

> I am going to call her allergist and derm. but wanted to know your

> opinion. pls answer asap. thank you so much for all your help. jean

>

>

>

[Guest guest]

I absolutely agree and would never take Prednisone if I did not have

to! I have suffered almost ever side effect Prednisone has to offer,

including Prednisone Induced, insulin depended, Diabetes. I fully

expect Prednisone induced complications will someday kill me, that is

why I feel Xolair is so important. That being said, in my case and

YMMV, I have never been able to get below 20 mg and still breath and

of course breathing is not an option. In my post I was commenting on

the interaction between the two drugs and I apologize If anyone may

have interpreted my response as a recommendation for or advocating for

Prednisone, that's why we call it evil candy. I have to make an

informed decision with my Dr as to my treatment and at this point in

my life I no longer believe there are absolutes when it come to

treatment. The one thing I like about this forum is the information I

am able to receive from everyone with varying degrees of success and

the moderators keeping it on tract, it helps guide me, but any

decisions I make are mine and mine alone based on all the input I am

able to receive.

Ron

On Mar 9, 2009, at 10:41 PM, Leigh McCall-Alton wrote:

> Prednisone is evil candy. After tapering from 20 mg. very slowly

> down to 13 mg., my new pulmonologist put me on 40mg until he could

> bronchoscope me and wash out my lungs. In the past week, my blood

> sugar has become wild and out of control, my vision is blurred, I

> have more moon face and while not sleeping and have no energy. And

> guess what? He refused to perform the bronchoscopy today when he was

> told that anestheologist is required for me. So prednisone has

> raised my blood pressure, caused Cushing's disease, uncontrollable

> diabetes, a weight gain of 60 pounds, and lowered my immune system.

> The longer you are on Prednisone, the side effects brecome more

> pronounced.

>

> ________________________________

> From: Carpenter <cowtrail@...>

>

> Sent: Monday, March 9, 2009 5:35:34 PM

> Subject: Re: [ ] another question on xolair for AD

>

> I have been on the maximum dose of Xolair, 375 mg every two weeks for

> three plus years. I am also on a daily " maintenance dose " of

> Prednisone, 20 mg. My Pulmo states he is unconcerned with taking

> Prednisone and Xolair together, (he feels Xolair is very safe),

> although he would like to see me off Prednisone because of the side

> effects and there are many, in my case he does not feel that will be

> possible.

>

> Good luck with your daughter, I am hoping for the best for both of

> you.

>

> Ron

>

> On Mar 9, 2009, at 12:22 PM, gigles_1955 wrote:

>

> > me again. My daughter saw her allergist today who is going to summit

> > a request for her to start xolair shots.

> > my question is, is it ok to keep her on low dose prednisone for

> > awhile until the xolair has a chance to kick in? Her allergist said

> > iot would be at least 3 months before she might see any progress(in

> > her atopic dermatitis). I know pred. is a nasty drug, but would a

> > low dose do a lot of harm(She can stay on 20 mgs and her skin is

> > somewhat tollerable).

> > I am going to call her allergist and derm. but wanted to know your

> > opinion. pls answer asap. thank you so much for all your help. jean

> >

> >

> >

>

>

[Guest guest]

Hi Ron,

I didn't feel like you were recommending prednisone. I felt like you

answered my question based on your experience and this is what I was looking

for. I didn't get from your answer that my daughter should take prednisone, I

got that it was what your doctor said was ok for you and your situation. I

appreciate your answer and like you said I take yours and everyones responses

along with my daughter's drs. advice and make a imformed decision.

Unfortunatly, sometimes we have to take medicine that is evil but when the

choices are this or not breathing then there is only one choice.

my daughters problem(at the moment) is not her asthma so much as it is her

skin. Most people might think this doesn't warrent taking such a powerful evil

med. but when you have no quality of life and the skin problems ends you up in

the ER then yes it is necessary.

I do understand how people feel about prednisone. My sister has just about

every problem you can get from being on prednisone for many years. I hate this

medicine and I hate that I have to make a decision for my daughter to use it but

sometimes life deals you a rotten hand.

Thank you Ron for your response. I will keep you in my thoughts. Jean

>

> I absolutely agree and would never take Prednisone if I did not have

> to! I have suffered almost ever side effect Prednisone has to offer,

> including Prednisone Induced, insulin depended, Diabetes. I fully

> expect Prednisone induced complications will someday kill me, that is

> why I feel Xolair is so important. That being said, in my case and

> YMMV, I have never been able to get below 20 mg and still breath and

> of course breathing is not an option. In my post I was commenting on

> the interaction between the two drugs and I apologize If anyone may

> have interpreted my response as a recommendation for or advocating for

> Prednisone, that's why we call it evil candy. I have to make an

> informed decision with my Dr as to my treatment and at this point in

> my life I no longer believe there are absolutes when it come to

> treatment. The one thing I like about this forum is the information I

> am able to receive from everyone with varying degrees of success and

> the moderators keeping it on tract, it helps guide me, but any

> decisions I make are mine and mine alone based on all the input I am

> able to receive.

>

> Ron

>

> On Mar 9, 2009, at 10:41 PM, Leigh McCall-Alton wrote:

>

> > Prednisone is evil candy. After tapering from 20 mg. very slowly

> > down to 13 mg., my new pulmonologist put me on 40mg until he could

> > bronchoscope me and wash out my lungs. In the past week, my blood

> > sugar has become wild and out of control, my vision is blurred, I

> > have more moon face and while not sleeping and have no energy. And

> > guess what? He refused to perform the bronchoscopy today when he was

> > told that anestheologist is required for me. So prednisone has

> > raised my blood pressure, caused Cushing's disease, uncontrollable

> > diabetes, a weight gain of 60 pounds, and lowered my immune system.

> > The longer you are on Prednisone, the side effects brecome more

> > pronounced.

> >

> > ________________________________

> > From: Carpenter <cowtrail@...>

> >

> > Sent: Monday, March 9, 2009 5:35:34 PM

> > Subject: Re: [ ] another question on xolair for AD

> >

> > I have been on the maximum dose of Xolair, 375 mg every two weeks for

> > three plus years. I am also on a daily " maintenance dose " of

> > Prednisone, 20 mg. My Pulmo states he is unconcerned with taking

> > Prednisone and Xolair together, (he feels Xolair is very safe),

> > although he would like to see me off Prednisone because of the side

> > effects and there are many, in my case he does not feel that will be

> > possible.

> >

> > Good luck with your daughter, I am hoping for the best for both of

> > you.

> >

> > Ron

> >

> > On Mar 9, 2009, at 12:22 PM, gigles_1955 wrote:

> >

> > > me again. My daughter saw her allergist today who is going to summit

> > > a request for her to start xolair shots.

> > > my question is, is it ok to keep her on low dose prednisone for

> > > awhile until the xolair has a chance to kick in? Her allergist said

> > > iot would be at least 3 months before she might see any progress(in

> > > her atopic dermatitis). I know pred. is a nasty drug, but would a

> > > low dose do a lot of harm(She can stay on 20 mgs and her skin is

> > > somewhat tollerable).

> > > I am going to call her allergist and derm. but wanted to know your

> > > opinion. pls answer asap. thank you so much for all your help. jean

> > >

> > >

> > >

> >

> >

[Guest guest]

Interferon gamma is the drug of choice now for unremitting atopic dermititus!!!!

Spread the word.  I am on it and welcome questions.

itchy in ct

> >

> > > me again. My daughter saw her allergist today who is going to summit

> > > a request for her to start xolair shots.

> > > my question is, is it ok to keep her on low dose prednisone for

> > > awhile until the xolair has a chance to kick in? Her allergist said

> > > iot would be at least 3 months before she might see any progress(in

> > > her atopic dermatitis). I know pred. is a nasty drug, but would a

> > > low dose do a lot of harm(She can stay on 20 mgs and her skin is

> > > somewhat tollerable).

> > > I am going to call her allergist and derm. but wanted to know your

> > > opinion. pls answer asap. thank you so much for all your help. jean

> > >

> > >

> > >

> >

> >

[Guest guest]

Thank you I appreciate your response. Maybe if more off label

use of Xolair is allowed it will benefit all. I understand quality of

life issues and if it were my daughter I would also be exploring all

possibilities and focusing on my priorities and options, as obviously

you are. To me it always seems more tragic when young people are

involved. I have observed severe skin problems first hand and it can

be very debilitating. My hopes are that Xolair works and all is well.

Ron

On Mar 10, 2009, at 11:07 AM, gigles_1955 wrote:

> Hi Ron,

>

> I didn't feel like you were recommending prednisone. I felt like you

> answered my question based on your experience and this is what I was

> looking for. I didn't get from your answer that my daughter should

> take prednisone, I got that it was what your doctor said was ok for

> you and your situation. I appreciate your answer and like you said I

> take yours and everyones responses along with my daughter's drs.

> advice and make a imformed decision. Unfortunatly, sometimes we have

> to take medicine that is evil but when the choices are this or not

> breathing then there is only one choice.

>

> my daughters problem(at the moment) is not her asthma so much as it

> is her skin. Most people might think this doesn't warrent taking

> such a powerful evil med. but when you have no quality of life and

> the skin problems ends you up in the ER then yes it is necessary.

>

> I do understand how people feel about prednisone. My sister has just

> about every problem you can get from being on prednisone for many

> years. I hate this medicine and I hate that I have to make a

> decision for my daughter to use it but sometimes life deals you a

> rotten hand.

>

> Thank you Ron for your response. I will keep you in my thoughts. Jean

>

> >

> > I absolutely agree and would never take Prednisone if I did not have

> > to! I have suffered almost ever side effect Prednisone has to offer,

> > including Prednisone Induced, insulin depended, Diabetes. I fully

> > expect Prednisone induced complications will someday kill me, that

> is

> > why I feel Xolair is so important. That being said, in my case and

> > YMMV, I have never been able to get below 20 mg and still breath and

> > of course breathing is not an option. In my post I was commenting on

> > the interaction between the two drugs and I apologize If anyone may

> > have interpreted my response as a recommendation for or advocating

> for

> > Prednisone, that's why we call it evil candy. I have to make an

> > informed decision with my Dr as to my treatment and at this point in

> > my life I no longer believe there are absolutes when it come to

> > treatment. The one thing I like about this forum is the

> information I

> > am able to receive from everyone with varying degrees of success and

> > the moderators keeping it on tract, it helps guide me, but any

> > decisions I make are mine and mine alone based on all the input I am

> > able to receive.

> >

> > Ron

> >

> > On Mar 9, 2009, at 10:41 PM, Leigh McCall-Alton wrote:

> >

> > > Prednisone is evil candy. After tapering from 20 mg. very slowly

> > > down to 13 mg., my new pulmonologist put me on 40mg until he could

> > > bronchoscope me and wash out my lungs. In the past week, my blood

> > > sugar has become wild and out of control, my vision is blurred, I

> > > have more moon face and while not sleeping and have no energy. And

> > > guess what? He refused to perform the bronchoscopy today when he

> was

> > > told that anestheologist is required for me. So prednisone has

> > > raised my blood pressure, caused Cushing's disease, uncontrollable

> > > diabetes, a weight gain of 60 pounds, and lowered my immune

> system.

> > > The longer you are on Prednisone, the side effects brecome more

> > > pronounced.

> > >

> > > ________________________________

> > > From: Carpenter <cowtrail@...>

> > >

> > > Sent: Monday, March 9, 2009 5:35:34 PM

> > > Subject: Re: [ ] another question on xolair for AD

> > >

> > > I have been on the maximum dose of Xolair, 375 mg every two

> weeks for

> > > three plus years. I am also on a daily " maintenance dose " of

> > > Prednisone, 20 mg. My Pulmo states he is unconcerned with taking

> > > Prednisone and Xolair together, (he feels Xolair is very safe),

> > > although he would like to see me off Prednisone because of the

> side

> > > effects and there are many, in my case he does not feel that

> will be

> > > possible.

> > >

> > > Good luck with your daughter, I am hoping for the best for both of

> > > you.

> > >

> > > Ron

> > >

> > > On Mar 9, 2009, at 12:22 PM, gigles_1955 wrote:

> > >

> > > > me again. My daughter saw her allergist today who is going to

> summit

> > > > a request for her to start xolair shots.

> > > > my question is, is it ok to keep her on low dose prednisone for

> > > > awhile until the xolair has a chance to kick in? Her allergist

> said

> > > > iot would be at least 3 months before she might see any

> progress(in

> > > > her atopic dermatitis). I know pred. is a nasty drug, but

> would a

> > > > low dose do a lot of harm(She can stay on 20 mgs and her skin is

> > > > somewhat tollerable).

> > > > I am going to call her allergist and derm. but wanted to know

> your

> > > > opinion. pls answer asap. thank you so much for all your help.

> jean

> > > >

> > > >

> > > >

> > >

> > >

[Guest guest]

thanks . jean

>

> Interferon gamma is the drug of choice now for unremitting atopic

dermititus!!!! Spread the word.  I am on it and welcome questions.

> itchy in ct

>

>

>

> > >

>

> > > > me again. My daughter saw her allergist today who is going to summit

>

> > > > a request for her to start xolair shots.

>

> > > > my question is, is it ok to keep her on low dose prednisone for

>

> > > > awhile until the xolair has a chance to kick in? Her allergist said

>

> > > > iot would be at least 3 months before she might see any progress(in

>

> > > > her atopic dermatitis). I know pred. is a nasty drug, but would a

>

> > > > low dose do a lot of harm(She can stay on 20 mgs and her skin is

>

> > > > somewhat tollerable).

>

> > > > I am going to call her allergist and derm. but wanted to know your

>

> > > > opinion. pls answer asap. thank you so much for all your help. jean

>

> > > >

>

> > > >

>

> > > >

>

> > >

>

> > >

[Guest guest]

Your welcome Ron.

I hope they approve it for off label use for other diseases too. I am hoping

our insurance company approves it for my daughter because her IgE is so high but

her allergist said he would fight for her.

Thank you again for your help and well wishes. I'll let you know how things

go. Take care.

Jean

>

> Thank you I appreciate your response. Maybe if more off label

> use of Xolair is allowed it will benefit all. I understand quality of

> life issues and if it were my daughter I would also be exploring all

> possibilities and focusing on my priorities and options, as obviously

> you are. To me it always seems more tragic when young people are

> involved. I have observed severe skin problems first hand and it can

> be very debilitating. My hopes are that Xolair works and all is well.

>

> Ron

>

> On Mar 10, 2009, at 11:07 AM, gigles_1955 wrote:

>

> > Hi Ron,

> >

> > I didn't feel like you were recommending prednisone. I felt like you

> > answered my question based on your experience and this is what I was

> > looking for. I didn't get from your answer that my daughter should

> > take prednisone, I got that it was what your doctor said was ok for

> > you and your situation. I appreciate your answer and like you said I

> > take yours and everyones responses along with my daughter's drs.

> > advice and make a imformed decision. Unfortunatly, sometimes we have

> > to take medicine that is evil but when the choices are this or not

> > breathing then there is only one choice.

> >

> > my daughters problem(at the moment) is not her asthma so much as it

> > is her skin. Most people might think this doesn't warrent taking

> > such a powerful evil med. but when you have no quality of life and

> > the skin problems ends you up in the ER then yes it is necessary.

> >

> > I do understand how people feel about prednisone. My sister has just

> > about every problem you can get from being on prednisone for many

> > years. I hate this medicine and I hate that I have to make a

> > decision for my daughter to use it but sometimes life deals you a

> > rotten hand.

> >

> > Thank you Ron for your response. I will keep you in my thoughts. Jean

> >

> > >

> > > I absolutely agree and would never take Prednisone if I did not have

> > > to! I have suffered almost ever side effect Prednisone has to offer,

> > > including Prednisone Induced, insulin depended, Diabetes. I fully

> > > expect Prednisone induced complications will someday kill me, that

> > is

> > > why I feel Xolair is so important. That being said, in my case and

> > > YMMV, I have never been able to get below 20 mg and still breath and

> > > of course breathing is not an option. In my post I was commenting on

> > > the interaction between the two drugs and I apologize If anyone may

> > > have interpreted my response as a recommendation for or advocating

> > for

> > > Prednisone, that's why we call it evil candy. I have to make an

> > > informed decision with my Dr as to my treatment and at this point in

> > > my life I no longer believe there are absolutes when it come to

> > > treatment. The one thing I like about this forum is the

> > information I

> > > am able to receive from everyone with varying degrees of success and

> > > the moderators keeping it on tract, it helps guide me, but any

> > > decisions I make are mine and mine alone based on all the input I am

> > > able to receive.

> > >

> > > Ron

> > >

> > > On Mar 9, 2009, at 10:41 PM, Leigh McCall-Alton wrote:

> > >

> > > > Prednisone is evil candy. After tapering from 20 mg. very slowly

> > > > down to 13 mg., my new pulmonologist put me on 40mg until he could

> > > > bronchoscope me and wash out my lungs. In the past week, my blood

> > > > sugar has become wild and out of control, my vision is blurred, I

> > > > have more moon face and while not sleeping and have no energy. And

> > > > guess what? He refused to perform the bronchoscopy today when he

> > was

> > > > told that anestheologist is required for me. So prednisone has

> > > > raised my blood pressure, caused Cushing's disease, uncontrollable

> > > > diabetes, a weight gain of 60 pounds, and lowered my immune

> > system.

> > > > The longer you are on Prednisone, the side effects brecome more

> > > > pronounced.

> > > >

> > > > ________________________________

> > > > From: Carpenter <cowtrail@>

> > > >

> > > > Sent: Monday, March 9, 2009 5:35:34 PM

> > > > Subject: Re: [ ] another question on xolair for AD

> > > >

> > > > I have been on the maximum dose of Xolair, 375 mg every two

> > weeks for

> > > > three plus years. I am also on a daily " maintenance dose " of

> > > > Prednisone, 20 mg. My Pulmo states he is unconcerned with taking

> > > > Prednisone and Xolair together, (he feels Xolair is very safe),

> > > > although he would like to see me off Prednisone because of the

> > side

> > > > effects and there are many, in my case he does not feel that

> > will be

> > > > possible.

> > > >

> > > > Good luck with your daughter, I am hoping for the best for both of

> > > > you.

> > > >

> > > > Ron

> > > >

> > > > On Mar 9, 2009, at 12:22 PM, gigles_1955 wrote:

> > > >

> > > > > me again. My daughter saw her allergist today who is going to

> > summit

> > > > > a request for her to start xolair shots.

> > > > > my question is, is it ok to keep her on low dose prednisone for

> > > > > awhile until the xolair has a chance to kick in? Her allergist

> > said

> > > > > iot would be at least 3 months before she might see any

> > progress(in

> > > > > her atopic dermatitis). I know pred. is a nasty drug, but

> > would a

> > > > > low dose do a lot of harm(She can stay on 20 mgs and her skin is

> > > > > somewhat tollerable).

> > > > > I am going to call her allergist and derm. but wanted to know

> > your

> > > > > opinion. pls answer asap. thank you so much for all your help.

> > jean

> > > > >

> > > > >

> > > > >

> > > >

> > > >