Re: bronchieactisis and aspergillisosis

[Guest guest]

She absolutely needs to go to National Jewish or another top research

hospital that has a strong pulmo department. Even the major

university hospital in your state would be a good option.

It is really incumbent on all of us when we get bad news to get a

second opinion.

In the meantime, get her a copy of the book, " Coping with Prednisone. "

It was written by two sisters, one of whom needed high doses of pred

for a long time due to a serious illness. The other sister is a

doctor who had prescribed pred for years and not taken her patients'

complaints about the side effects seriously until she saw what her

sister went through. It gives great suggestions for healthy snacks to

help fight cravings, how to keep the mood swings under control, etc.

Addy

Group co-owner

>

> Hi everyone. I am looking for some answers for my sister. I have

> been on Xolair myself for a year and have had great results except

> for a couple of pesky side affects. I am asking for some help for

> my sister.

>

> She has been diagnosed with both bronchieactisis and

> aspergillisosis. Partly because she had a crappy doctor who didn't

> do what he should have done when she first started getting pneumonia

> and bronchitis. And with her being afraid to speak up it went on and

> on until now she is dealing with this. The dr. has now told her she

> will have to be on prednisone the rest of her life. That there is

> nothing more he can do. She is terrified, depressed and at her wits

> end. I did some research and did look into National Jewish Hospital

> and gave her that information but if any of you know have any more

> ideas I would appreciate some help. I told her there is no way she

> can stay on prednisone the rest of her life. She is already

> suffering all the side affects from the drug and her hope is

> starting to fade for any answers.

>

> Thanks, You can email at gaildaniels@... if you have and

> answers for me!

>

[Guest guest]

Gail,

I agree with Addy she needs to be evaluated by specialists. If you need

to know more about the Jewish Hospital you may contact me at

steve@... and I will be happy to provide my esperience with the

evaluation process.

Also, I have read the book " Coping with Prednisone. " I found it to be

very enlightening and gave me the strength to look beyond my current

ailments and learn there is more to life. It is not a large book. I

believe it took me only day or so to read it.

Steve Zimmerman

Have a Good Day

785-296-6947

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

From: [mailto: ]

On Behalf Of pyle456

Sent: Wednesday, April 25, 2007 1:24 PM

Subject: [ ] Re: bronchieactisis and aspergillisosis

She absolutely needs to go to National Jewish or another top research

hospital that has a strong pulmo department. Even the major university

hospital in your state would be a good option.

It is really incumbent on all of us when we get bad news to get a second

opinion.

In the meantime, get her a copy of the book, " Coping with Prednisone. "

It was written by two sisters, one of whom needed high doses of pred

for a long time due to a serious illness. The other sister is a doctor

who had prescribed pred for years and not taken her patients'

complaints about the side effects seriously until she saw what her

sister went through. It gives great suggestions for healthy snacks to

help fight cravings, how to keep the mood swings under control, etc.

Addy

Group co-owner

>

> Hi everyone. I am looking for some answers for my sister. I have

> been on Xolair myself for a year and have had great results except for

> a couple of pesky side affects. I am asking for some help for my

> sister.

>

> She has been diagnosed with both bronchieactisis and aspergillisosis.

> Partly because she had a crappy doctor who didn't do what he should

> have done when she first started getting pneumonia and bronchitis. And

> with her being afraid to speak up it went on and on until now she is

> dealing with this. The dr. has now told her she will have to be on

> prednisone the rest of her life. That there is nothing more he can do.

> She is terrified, depressed and at her wits end. I did some research

> and did look into National Jewish Hospital and gave her that

> information but if any of you know have any more ideas I would

> appreciate some help. I told her there is no way she can stay on

> prednisone the rest of her life. She is already suffering all the side

> affects from the drug and her hope is starting to fade for any

> answers.

>

> Thanks, You can email at gaildaniels@... if you have and answers for

> me!

>

[Guest guest]

Thanks so much! I will pass this along to her. I

appreciate it.

--- pyle456 <coachmac@...> wrote:

> She absolutely needs to go to National Jewish or

> another top research

> hospital that has a strong pulmo department. Even

> the major

> university hospital in your state would be a good

> option.

>

> It is really incumbent on all of us when we get bad

> news to get a

> second opinion.

>

> In the meantime, get her a copy of the book, " Coping

> with Prednisone. "

> It was written by two sisters, one of whom needed

> high doses of pred

> for a long time due to a serious illness. The other

> sister is a

> doctor who had prescribed pred for years and not

> taken her patients'

> complaints about the side effects seriously until

> she saw what her

> sister went through. It gives great suggestions for

> healthy snacks to

> help fight cravings, how to keep the mood swings

> under control, etc.

>

> Addy

> Group co-owner

>

>

> >

> > Hi everyone. I am looking for some answers for my

> sister. I have

> > been on Xolair myself for a year and have had

> great results except

> > for a couple of pesky side affects. I am asking

> for some help for

> > my sister.

> >

> > She has been diagnosed with both bronchieactisis

> and

> > aspergillisosis. Partly because she had a crappy

> doctor who didn't

> > do what he should have done when she first started

> getting pneumonia

> > and bronchitis. And with her being afraid to speak

> up it went on and

> > on until now she is dealing with this. The dr.

> has now told her she

> > will have to be on prednisone the rest of her

> life. That there is

> > nothing more he can do. She is terrified,

> depressed and at her wits

> > end. I did some research and did look into

> National Jewish Hospital

> > and gave her that information but if any of you

> know have any more

> > ideas I would appreciate some help. I told her

> there is no way she

> > can stay on prednisone the rest of her life. She

> is already

> > suffering all the side affects from the drug and

> her hope is

> > starting to fade for any answers.

> >

> > Thanks, You can email at gaildaniels@... if you

> have and

> > answers for me!

> >

>

>

>

__________________________________________________

[Guest guest]

I will be sure to give her your information. Thanks

again!

--- Steve Zimmerman <steve@...> wrote:

> Gail,

>

> I agree with Addy she needs to be evaluated by

> specialists. If you need

> to know more about the Jewish Hospital you may

> contact me at

> steve@... and I will be happy to provide my

> esperience with the

> evaluation process.

>

> Also, I have read the book " Coping with Prednisone. "

> I found it to be

> very enlightening and gave me the strength to look

> beyond my current

> ailments and learn there is more to life. It is not

> a large book. I

> believe it took me only day or so to read it.

>

>

> Steve Zimmerman

> Have a Good Day

> 785-296-6947

>

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

> From:

> [mailto: ]

> On Behalf Of pyle456

> Sent: Wednesday, April 25, 2007 1:24 PM

>

> Subject: [ ] Re: bronchieactisis and

> aspergillisosis

>

> She absolutely needs to go to National Jewish or

> another top research

> hospital that has a strong pulmo department. Even

> the major university

> hospital in your state would be a good option.

>

> It is really incumbent on all of us when we get bad

> news to get a second

> opinion.

>

> In the meantime, get her a copy of the book, " Coping

> with Prednisone. "

> It was written by two sisters, one of whom needed

> high doses of pred

> for a long time due to a serious illness. The other

> sister is a doctor

> who had prescribed pred for years and not taken her

> patients'

> complaints about the side effects seriously until

> she saw what her

> sister went through. It gives great suggestions for

> healthy snacks to

> help fight cravings, how to keep the mood swings

> under control, etc.

>

> Addy

> Group co-owner

>

>

> >

> > Hi everyone. I am looking for some answers for my

> sister. I have

> > been on Xolair myself for a year and have had

> great results except for

> > a couple of pesky side affects. I am asking for

> some help for my

> > sister.

> >

> > She has been diagnosed with both bronchieactisis

> and aspergillisosis.

> > Partly because she had a crappy doctor who didn't

> do what he should

> > have done when she first started getting pneumonia

> and bronchitis. And

> > with her being afraid to speak up it went on and

> on until now she is

> > dealing with this. The dr. has now told her she

> will have to be on

> > prednisone the rest of her life. That there is

> nothing more he can do.

> > She is terrified, depressed and at her wits end.

> I did some research

> > and did look into National Jewish Hospital and

> gave her that

> > information but if any of you know have any more

> ideas I would

> > appreciate some help. I told her there is no way

> she can stay on

> > prednisone the rest of her life. She is already

> suffering all the side

> > affects from the drug and her hope is starting to

> fade for any

> > answers.

> >

> > Thanks, You can email at gaildaniels@... if you

> have and answers for

> > me!

> >

>

>

>

>

>

>

[Guest guest]

>I also dealt with aspergillisosis. Mine was caused by the steroids

(ironic I know). I dealt with it for 18mos., but my ID dr is a

genious. Unfortunately, I live in ville,Fl. My drs were great

and they saved my life. If you would like more details you can email

me at asperqu@.... More irony: asperqu is short for

aspergillis queen. Xolair has been a true life saver because It has

kept me off pred and IV steroids. Good luck, Becki

> Hi everyone. I am looking for some answers for my sister. I have

> been on Xolair myself for a year and have had great results except

> for a couple of pesky side affects. I am asking for some help for

> my sister.

>

> She has been diagnosed with both bronchieactisis and

> aspergillisosis. Partly because she had a crappy doctor who didn't

> do what he should have done when she first started getting

pneumonia

> and bronchitis. And with her being afraid to speak up it went on

and

> on until now she is dealing with this. The dr. has now told her

she

> will have to be on prednisone the rest of her life. That there is

> nothing more he can do. She is terrified, depressed and at her

wits

> end. I did some research and did look into National Jewish

Hospital

> and gave her that information but if any of you know have any more

> ideas I would appreciate some help. I told her there is no way

she

> can stay on prednisone the rest of her life. She is already

> suffering all the side affects from the drug and her hope is

> starting to fade for any answers.

>

> Thanks, You can email at gaildaniels@... if you have and

> answers for me!

>

[Guest guest]

Thanks. I will forward her your email.

Jeannie

[Guest guest]

Hi Gail - just an aside - one of my dox, whom I highly respect, keeps me on

8 mg of prednisone per day. He swears that amount will cause no ill effects

in any way, and it helps a lot with the sinusitis, keepling it under

control.

Terry

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

From: jmbre926

Sent: Wednesday, April 25, 2007 10:40 AM

Subject: [ ] bronchieactisis and aspergillisosis

Hi everyone. I am looking for some answers for my sister. I have

been on Xolair myself for a year and have had great results except

for a couple of pesky side affects. I am asking for some help for

my sister.

She has been diagnosed with both bronchieactisis and

aspergillisosis. Partly because she had a crappy doctor who didn't

do what he should have done when she first started getting pneumonia

and bronchitis. And with her being afraid to speak up it went on and

on until now she is dealing with this. The dr. has now told her she

will have to be on prednisone the rest of her life. That there is

nothing more he can do. She is terrified, depressed and at her wits

end. I did some research and did look into National Jewish Hospital

and gave her that information but if any of you know have any more

ideas I would appreciate some help. I told her there is no way she

can stay on prednisone the rest of her life. She is already

suffering all the side affects from the drug and her hope is

starting to fade for any answers.

Thanks, You can email at gaildaniels@... if you have and

answers for me!

[Guest guest]

???? Do you always believe everything your doctor tells you? For instance one

told me yesterday something about another drug which I knew to be dead wrong.

Under normal conditions, my doctors tell me that the body manufactures around 6

to 7 mg. of prednisone of it's own. After long term use as with any drug, side

effects and complications can ensue. At 5 mg. under continuous use, I for

instance have developed constant swelling. When I go up on my dose temporarily,

I have more pronounced swelling. Long term usage of prednisone at any dosage is

dangerous--heart damage, swelling, adrenal suppression (I am having difficulty

taping below 5 mg.), etc. can follow.

I would suggest you read the side effects of prednisone and implications of it's

long term use.

Terry <onabeach@...> wrote: Hi

Gail - just an aside - one of my dox, whom I highly respect, keeps me on

8 mg of prednisone per day. He swears that amount will cause no ill effects

in any way, and it helps a lot with the sinusitis, keepling it under

control.

Terry

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

From: jmbre926

Sent: Wednesday, April 25, 2007 10:40 AM

Subject: [ ] bronchieactisis and aspergillisosis

Hi everyone. I am looking for some answers for my sister. I have

been on Xolair myself for a year and have had great results except

for a couple of pesky side affects. I am asking for some help for

my sister.

She has been diagnosed with both bronchieactisis and

aspergillisosis. Partly because she had a crappy doctor who didn't

do what he should have done when she first started getting pneumonia

and bronchitis. And with her being afraid to speak up it went on and

on until now she is dealing with this. The dr. has now told her she

will have to be on prednisone the rest of her life. That there is

nothing more he can do. She is terrified, depressed and at her wits

end. I did some research and did look into National Jewish Hospital

and gave her that information but if any of you know have any more

ideas I would appreciate some help. I told her there is no way she

can stay on prednisone the rest of her life. She is already

suffering all the side affects from the drug and her hope is

starting to fade for any answers.

Thanks, You can email at gaildaniels@... if you have and

answers for me!

[Guest guest]

Thanks!

[Guest guest]

Jane - With all due respect, I'm inclined to believe what this doctor tells

me - he's excellent and has been right about everything so far with regard

to my care, so I'll stick with his expertise. By the way, the 8 mg per day

is less than 10% of the normal dosage for my weight level, and at that low

level, he tells me it will actually help the adrenal glands to produce more

cortisol than they otherwise would.

Terry

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

From: jane mosher

Sent: Friday, April 27, 2007 8:11 AM

Subject: Re: [ ] bronchieactisis and aspergillisosis

???? Do you always believe everything your doctor tells you? For instance

one told me yesterday something about another drug which I knew to be dead

wrong. Under normal conditions, my doctors tell me that the body

manufactures around 6 to 7 mg. of prednisone of it's own. After long term

use as with any drug, side effects and complications can ensue. At 5 mg.

under continuous use, I for instance have developed constant swelling. When

I go up on my dose temporarily, I have more pronounced swelling. Long term

usage of prednisone at any dosage is dangerous--heart damage, swelling,

adrenal suppression (I am having difficulty taping below 5 mg.), etc. can

follow.

I would suggest you read the side effects of prednisone and implications

of it's long term use.

Terry <onabeach@...> wrote: Hi Gail - just an aside - one of

my dox, whom I highly respect, keeps me on

8 mg of prednisone per day. He swears that amount will cause no ill

effects

in any way, and it helps a lot with the sinusitis, keepling it under

control.

Terry

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

From: jmbre926

Sent: Wednesday, April 25, 2007 10:40 AM

Subject: [ ] bronchieactisis and aspergillisosis

Hi everyone. I am looking for some answers for my sister. I have

been on Xolair myself for a year and have had great results except

for a couple of pesky side affects. I am asking for some help for

my sister.

She has been diagnosed with both bronchieactisis and

aspergillisosis. Partly because she had a crappy doctor who didn't

do what he should have done when she first started getting pneumonia

and bronchitis. And with her being afraid to speak up it went on and

on until now she is dealing with this. The dr. has now told her she

will have to be on prednisone the rest of her life. That there is

nothing more he can do. She is terrified, depressed and at her wits

end. I did some research and did look into National Jewish Hospital

and gave her that information but if any of you know have any more

ideas I would appreciate some help. I told her there is no way she

can stay on prednisone the rest of her life. She is already

suffering all the side affects from the drug and her hope is

starting to fade for any answers.

Thanks, You can email at gaildaniels@... if you have and

answers for me!