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Dear Sue As Cathy mentioned I too use an advair inhaler. I started flaring and coughing alot and tight in the chest so I started the advair again , I use it only during flares. It's easier to use than 2inhalers servent and flovent. The advair inhaler is a combination of both these inhalers and works great for me. Hope this helps Sue Park

Re: Hello from Germany

Dear Werner, this is Sue Marth in Wisconsin, USA. I have had this horrible mucus problem for months. Doctor is treating me for sinus infection but nothing works. I actually throw up once a day because of the mucus. Could you please tell me what kind of inhalers your taking and other things that could help me too....My mucus is in the upper part of my throat, but I do think my other problem is treachea or bronchi. How did you get that diagnosed? Thank you for your help....Sue DISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

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Dear Sue As Cathy mentioned I too use an advair inhaler. I started flaring and coughing alot and tight in the chest so I started the advair again , I use it only during flares. It's easier to use than 2inhalers servent and flovent. The advair inhaler is a combination of both these inhalers and works great for me. Hope this helps Sue Park

Re: Hello from Germany

Dear Werner, this is Sue Marth in Wisconsin, USA. I have had this horrible mucus problem for months. Doctor is treating me for sinus infection but nothing works. I actually throw up once a day because of the mucus. Could you please tell me what kind of inhalers your taking and other things that could help me too....My mucus is in the upper part of my throat, but I do think my other problem is treachea or bronchi. How did you get that diagnosed? Thank you for your help....Sue DISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

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Hi,

this is Werner from Germany. I want to tell you after a long time of not

posting, that I am doing quite well. The warm summer temperatures are good

for my breathing.

For all new members: I am 53, live with my wife near furt. RP have I

since end of 1999, it was diagnosed last year in May. For the time being I am

on Pred (25 mg/day). I inhale to manage my mucous and to support my

breathing. Rp destroyed the cartilage of my trachea and bronchi. I have no

problems with ear, nose or eyes so far. I am again on my job and try to

follow all emails (thats not possible all time)

Unfortunately I am not in Oklahoma next weekend. I wish you a great and

wonderful meeting. Will it be possible to get a few pictures?

Jean, I read, that you are not doing well. Es tut mir sehr leid und ich bin

traurig das zu hören. So sorry.

Heidi, ich drücke Dir die Daumen, dass alles gut mit der ersten convention

klappt. Du hast eine wunderbare Arbeit geleistet. Schade, dass ich nicht bei

Euch bin!

Viele herzliche Grüße, I love you all

Werner

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Hi,

this is Werner from Germany. I want to tell you after a long time of not

posting, that I am doing quite well. The warm summer temperatures are good

for my breathing.

For all new members: I am 53, live with my wife near furt. RP have I

since end of 1999, it was diagnosed last year in May. For the time being I am

on Pred (25 mg/day). I inhale to manage my mucous and to support my

breathing. Rp destroyed the cartilage of my trachea and bronchi. I have no

problems with ear, nose or eyes so far. I am again on my job and try to

follow all emails (thats not possible all time)

Unfortunately I am not in Oklahoma next weekend. I wish you a great and

wonderful meeting. Will it be possible to get a few pictures?

Jean, I read, that you are not doing well. Es tut mir sehr leid und ich bin

traurig das zu hören. So sorry.

Heidi, ich drücke Dir die Daumen, dass alles gut mit der ersten convention

klappt. Du hast eine wunderbare Arbeit geleistet. Schade, dass ich nicht bei

Euch bin!

Viele herzliche Grüße, I love you all

Werner

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Werner, It is so good to hear from you and it is Great news that you are

doing so well. That is our hope for everyone...

I just talked to Jean and he is still having some breathing difficulties...

So sorry that you, Jean and the rest aren't going to be with us this

weekend.....But you will be with us in spirit..I told Jean that I would give

everyone a BIG hug from him and will also pass one along from you.... I

guess we will just be a big bunch of prednisone hugging fools. .. LOL

Know we are thinking of you... You take care of yourself and continue to get

better daily...

Lots of hugs and love to you and your family

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Werner, It is so good to hear from you and it is Great news that you are

doing so well. That is our hope for everyone...

I just talked to Jean and he is still having some breathing difficulties...

So sorry that you, Jean and the rest aren't going to be with us this

weekend.....But you will be with us in spirit..I told Jean that I would give

everyone a BIG hug from him and will also pass one along from you.... I

guess we will just be a big bunch of prednisone hugging fools. .. LOL

Know we are thinking of you... You take care of yourself and continue to get

better daily...

Lots of hugs and love to you and your family

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Dear Werner, this is Sue Marth in Wisconsin, USA. I have had this horrible mucus problem for months. Doctor is treating me for sinus infection but nothing works. I actually throw up once a day because of the mucus. Could you please tell me what kind of inhalers your taking and other things that could help me too....My mucus is in the upper part of my throat, but I do think my other problem is treachea or bronchi. How did you get that diagnosed? Thank you for your help....Sue

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Dear Werner, this is Sue Marth in Wisconsin, USA. I have had this horrible mucus problem for months. Doctor is treating me for sinus infection but nothing works. I actually throw up once a day because of the mucus. Could you please tell me what kind of inhalers your taking and other things that could help me too....My mucus is in the upper part of my throat, but I do think my other problem is treachea or bronchi. How did you get that diagnosed? Thank you for your help....Sue

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Werner

It is so good to see you post and to hear you are feeling better!

That is wonderful news. I am glad the summer is good for you! Keep

up the good work! (Being well and Posting!) I sure enjoy your posts.

How is the wife? It is always hard on our spouses to figure us out.

Tell her Hi for me and you take care! There should be a zillion

pictures when we get back. You will all be saying no more please!LOL

Lots of love

Glenda

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Werner

It is so good to see you post and to hear you are feeling better!

That is wonderful news. I am glad the summer is good for you! Keep

up the good work! (Being well and Posting!) I sure enjoy your posts.

How is the wife? It is always hard on our spouses to figure us out.

Tell her Hi for me and you take care! There should be a zillion

pictures when we get back. You will all be saying no more please!LOL

Lots of love

Glenda

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Werner,

So happy to here you are doing better. Could you tell me what it is that you

do to improve your breathing? Do you do some type of breathing exercise?

Hugs,

Sandy

> Hi,

> this is Werner from Germany. I want to tell you after a long time of not

> posting, that I am doing quite well. The warm summer temperatures are good

> for my breathing.

> For all new members: I am 53, live with my wife near furt. RP have I

> since end of 1999, it was diagnosed last year in May. For the time being I

am

> on Pred (25 mg/day). I inhale to manage my mucous and to support my

> breathing. Rp destroyed the cartilage of my trachea and bronchi. I have no

> problems with ear, nose or eyes so far. I am again on my job and try to

> follow all emails (thats not possible all time)

> Unfortunately I am not in Oklahoma next weekend. I wish you a great and

> wonderful meeting. Will it be possible to get a few pictures?

>

> Jean, I read, that you are not doing well. Es tut mir sehr leid und ich

bin

> traurig das zu hören. So sorry.

> Heidi, ich drücke Dir die Daumen, dass alles gut mit der ersten convention

> klappt. Du hast eine wunderbare Arbeit geleistet. Schade, dass ich nicht

bei

> Euch bin!

>

> Viele herzliche Grüße, I love you all

> Werner

>

>

>

>

> DISCLAIMER!!

> WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS

RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR

BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR

PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND

TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

>

>

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Werner,

So happy to here you are doing better. Could you tell me what it is that you

do to improve your breathing? Do you do some type of breathing exercise?

Hugs,

Sandy

> Hi,

> this is Werner from Germany. I want to tell you after a long time of not

> posting, that I am doing quite well. The warm summer temperatures are good

> for my breathing.

> For all new members: I am 53, live with my wife near furt. RP have I

> since end of 1999, it was diagnosed last year in May. For the time being I

am

> on Pred (25 mg/day). I inhale to manage my mucous and to support my

> breathing. Rp destroyed the cartilage of my trachea and bronchi. I have no

> problems with ear, nose or eyes so far. I am again on my job and try to

> follow all emails (thats not possible all time)

> Unfortunately I am not in Oklahoma next weekend. I wish you a great and

> wonderful meeting. Will it be possible to get a few pictures?

>

> Jean, I read, that you are not doing well. Es tut mir sehr leid und ich

bin

> traurig das zu hören. So sorry.

> Heidi, ich drücke Dir die Daumen, dass alles gut mit der ersten convention

> klappt. Du hast eine wunderbare Arbeit geleistet. Schade, dass ich nicht

bei

> Euch bin!

>

> Viele herzliche Grüße, I love you all

> Werner

>

>

>

>

> DISCLAIMER!!

> WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS

RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR

BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR

PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND

TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

>

>

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Sue,

I just want to tell you that you are having the same problems that my Dad has. His doctor put him on a new inhaler, Advir. Can't decide if it is better than the old ones and it is very expensive. Dad is 77 and has medicare. His gap filler has a $50 deductable. They finally diagnosed the problem by doing a CT scan of his throat and got a good look at the surrounding structures. He often throws up when eating because the airway is so small now and food gets stuck. At least now he can't blame it on my cooking! Now we know it is RP. When the mucous gets really bad he also takes Zithromax. The CT scan was the real help. He had all kinds of other stuff and didn't find anything. Cathy

Re: Hello from Germany

Dear Werner, this is Sue Marth in Wisconsin, USA. I have had this horrible mucus problem for months. Doctor is treating me for sinus infection but nothing works. I actually throw up once a day because of the mucus. Could you please tell me what kind of inhalers your taking and other things that could help me too....My mucus is in the upper part of my throat, but I do think my other problem is treachea or bronchi. How did you get that diagnosed? Thank you for your help....Sue DISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

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Sue,

I just want to tell you that you are having the same problems that my Dad has. His doctor put him on a new inhaler, Advir. Can't decide if it is better than the old ones and it is very expensive. Dad is 77 and has medicare. His gap filler has a $50 deductable. They finally diagnosed the problem by doing a CT scan of his throat and got a good look at the surrounding structures. He often throws up when eating because the airway is so small now and food gets stuck. At least now he can't blame it on my cooking! Now we know it is RP. When the mucous gets really bad he also takes Zithromax. The CT scan was the real help. He had all kinds of other stuff and didn't find anything. Cathy

Re: Hello from Germany

Dear Werner, this is Sue Marth in Wisconsin, USA. I have had this horrible mucus problem for months. Doctor is treating me for sinus infection but nothing works. I actually throw up once a day because of the mucus. Could you please tell me what kind of inhalers your taking and other things that could help me too....My mucus is in the upper part of my throat, but I do think my other problem is treachea or bronchi. How did you get that diagnosed? Thank you for your help....Sue DISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

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