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Werner,

Welcome to the group. Sorry to hear you are having problems. Hopefully

they will get it all straightened out for you. It was very nice to read

your story and I too am a newbie as they call us. This group of people is

the greatest and yes I have learned a lot about RP since I joined the group.

Hope to hear from you again.

Glenda

Lots of Love

On Sun, 3 Sep 2000 10:58:23 -0000, Rpolychondritisegroups wrote:

>

> Forwarded

>

> > Hello Heidi,

> >

> > I send many congratulations to your husband for his 65th birthday. I

hope

> he

> > will enjoy his day and that he makes a sucessfull switch to a new part

of

> his

> > life going into retirement. Many greetings also from Gaby.

> >

> > I have been very happy last Sunday when you phoned me. I suscribed the

RP-

> goup

> > and get now as you told me every day lots of emails. Its for me

impossible

> to

> > follow all storys. So I`m deleting most of the mails immediately.

> >

> > I also want to say thank-you to Woods who first took notice of me

and

> who

> > introduced me to you as I understood.

> >

> > Hello ,

> >

> > may I just call you in this way?

> >

> > I want to tell a little bit my story. It was October last year when I

> started

> > with a cough that did not end. My doctor checked a lot and identified a

> narrow

> > trachea by CT. The diagnostic process took several months. All together

I

> was 9

> > weeks in two hospitals, where I was checked completely. First no

specific

> > diagnosis could not be stated exept to have an idea of an autoimmun

> disease.

> > That is why already in february this year a therapy wiht prednisone was

> started.

> > Finally in May a Professor in Heidelberg stated Polychondritis. With me

> only the

> > repiratory tract is involved, not nose or ears. And my problem is

" only "

> the

> > limited ventilation of my lungs. This is a severe change in my life, as

I

> was

> > before a sportsman in my free time where I enjoyed jogging and biking.

> Several

> > times I run Marathon distances. This is no longer possible now. But I

try

> with

> > my wife to regain some fitness (Walking, biking on a tandem, power

> training). I

> > feel very well as I experience some progress.

> >

> > A trial to substitute prednisone by Imurek (Azathioprin) went wrong as

to

> some

> > side effects (fever, vomiting, blood parameters). I am back now with

> prednisone

> > on a level of 50 mg/day. The next trial will probably be with

Methotrexat.

> In

> > addition I inhale three times a day after the meals with an expectorant

to

> keep

> > my trachea and bronchi clean from secretion. So my limited pulmonary

> function

> > is kept on a level that I need no further support when I´m sitting or

> walking.

> >

> > I´m 52 years old, married for 27 years with my wife Gaby. I have two

> daughters

> > in the age of 19 and 20 years. The elder, Sabine, is making her studies

on

> the

> > University of Karlsruhe, the younger just finished her bachelors degree

and

> > start her study in October this year at the University of Mainz. I am

by

> > profession a Chemist, working as a Manager in a fiber producing

company. My

> wife

> > Gaby is a teacher.

> >

> > Heidi told me, that there are also members of the group in Germany and

> > Switzerland. Can you give me an adress or a e-mail-contact?

> > Heidi, as you told me, at the University of Erlangen (Hautklinik) there

> would be

> > some interest on RP. Do you know a name to contact? I would appreciate

to

> have

> > some support and contacts more nearby.

> >

> > Heidi and , so far some information about my family and me. I

repeat

> that I

> > enjoyed to come into contact with you. I gives me hope to learn better

to

> live

> > with RP.

> > Many greetings from Germany and a happy birthday to Heidis husband!

> >

> > 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

>

_______________________________________________________

Say Bye to Slow Internet!

http://www.home.com/xinbox/signup.html

Link to comment
Share on other sites

Hello Glenda,

just read your mail making me happy learning about others in a similar

situation. Before I thought to be a single case. The group give me hope to

learn and understand more of my sickness. I would like to know a little bit

more from you. Where do you live, whats about your RP: since what time, your

experience with therapeutic means? and so on...

" eyeoreluv@... " said:

>

> Werner,

> Welcome to the group. Sorry to hear you are having problems. Hopefully

> they will get it all straightened out for you. It was very nice to read

> your story and I too am a newbie as they call us. This group of people is

> the greatest and yes I have learned a lot about RP since I joined the group.

> Hope to hear from you again.

>

> Glenda

> Lots of Love

>

>

> On Sun, 3 Sep 2000 10:58:23 -0000, Rpolychondritisegroups wrote:

>

> >

> > Forwarded

> >

> > > Hello Heidi,

> > >

> > > I send many congratulations to your husband for his 65th birthday. I

> hope

> > he

> > > will enjoy his day and that he makes a sucessfull switch to a new part

> of

> > his

> > > life going into retirement. Many greetings also from Gaby.

> > >

> > > I have been very happy last Sunday when you phoned me. I suscribed the

> RP-

> > goup

> > > and get now as you told me every day lots of emails. Its for me

> impossible

> > to

> > > follow all storys. So I`m deleting most of the mails immediately.

> > >

> > > I also want to say thank-you to Woods who first took notice of me

> and

> > who

> > > introduced me to you as I understood.

> > >

> > > Hello ,

> > >

> > > may I just call you in this way?

> > >

> > > I want to tell a little bit my story. It was October last year when I

> > started

> > > with a cough that did not end. My doctor checked a lot and identified a

>

> > narrow

> > > trachea by CT. The diagnostic process took several months. All together

> I

> > was 9

> > > weeks in two hospitals, where I was checked completely. First no

> specific

> > > diagnosis could not be stated exept to have an idea of an autoimmun

> > disease.

> > > That is why already in february this year a therapy wiht prednisone was

>

> > started.

> > > Finally in May a Professor in Heidelberg stated Polychondritis. With me

>

> > only the

> > > repiratory tract is involved, not nose or ears. And my problem is

> " only "

> > the

> > > limited ventilation of my lungs. This is a severe change in my life, as

> I

> > was

> > > before a sportsman in my free time where I enjoyed jogging and biking.

> > Several

> > > times I run Marathon distances. This is no longer possible now. But I

> try

> > with

> > > my wife to regain some fitness (Walking, biking on a tandem, power

> > training). I

> > > feel very well as I experience some progress.

> > >

> > > A trial to substitute prednisone by Imurek (Azathioprin) went wrong as

> to

> > some

> > > side effects (fever, vomiting, blood parameters). I am back now with

> > prednisone

> > > on a level of 50 mg/day. The next trial will probably be with

> Methotrexat.

> > In

> > > addition I inhale three times a day after the meals with an expectorant

> to

> > keep

> > > my trachea and bronchi clean from secretion. So my limited pulmonary

> > function

> > > is kept on a level that I need no further support when I´m sitting or

> > walking.

> > >

> > > I´m 52 years old, married for 27 years with my wife Gaby. I have two

> > daughters

> > > in the age of 19 and 20 years. The elder, Sabine, is making her studies

> on

> > the

> > > University of Karlsruhe, the younger just finished her bachelors degree

> and

> > > start her study in October this year at the University of Mainz. I am

> by

> > > profession a Chemist, working as a Manager in a fiber producing

> company. My

> > wife

> > > Gaby is a teacher.

> > >

> > > Heidi told me, that there are also members of the group in Germany and

> > > Switzerland. Can you give me an adress or a e-mail-contact?

> > > Heidi, as you told me, at the University of Erlangen (Hautklinik) there

>

> > would be

> > > some interest on RP. Do you know a name to contact? I would appreciate

> to

> > have

> > > some support and contacts more nearby.

> > >

> > > Heidi and , so far some information about my family and me. I

> repeat

> > that I

> > > enjoyed to come into contact with you. I gives me hope to learn better

> to

> > live

> > > with RP.

> > > Many greetings from Germany and a happy birthday to Heidis husband!

> > >

> > > 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

> >

>

>

>

>

>

> _______________________________________________________

> Say Bye to Slow Internet!

> http://www.home.com/xinbox/signup.html

>

>

> 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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Share on other sites

Werner,

I am a mother of two grown children and raising one of my grandchildren. I

am 43 yrs old and have had RP for 7 yrs. I was luck had was diagnose early.

I have hardly any damage from RP. I have had flares in my

ears,nose,wrist,ribs,and tail bone. I work a 40 hour week and get around

real good. Some of the others in the group aren't so luck. I live in

Springfield, Oregon. It is located on the Pacific coast of the United

States.

It is one of the beautiful states here. Green year round because of the

evergreen trees here.

I take 100mg of Imuran and pred. as needed. I take calcuim 1500mg and multi

viatimns for " D " . I have been on Imuran since the onset without

complications. I was on high doses of predizone for the first 3yrs and then

tapered off to only when I need it. Only problems I have are being more

suseptable to colds and everything that goes around. I can live with that.

It's a lot easier that suffering from the flares of RP.

Once they get your system regulated maybe you will be able to go back to the

marathons. Sometimes it just takes awhile to get your medications right for

you.

Hope this helps you. It is so great to realy hear from Germany. Germany is

one of the places that I would love to visit. The History there is just

fabulous. My maiden name was Frederick. And My grandma's maiden name was

Deiterle.

Keep in touch!

Lots of Love

Glenda

On Sun, 3 Sep 2000 19:03:23 -0000, Werner Klostermeier wrote:

> Hello Glenda,

> just read your mail making me happy learning about others in a similar

> situation. Before I thought to be a single case. The group give me hope

to

> learn and understand more of my sickness. I would like to know a little

bit

> more from you. Where do you live, whats about your RP: since what time,

your

> experience with therapeutic means? and so on...

>

>

> " eyeoreluv@... " said:

>

> > -------------------------- eGroups Sponsor

> >

> > Werner,

> > Welcome to the group. Sorry to hear you are having problems.

Hopefully

> > they will get it all straightened out for you. It was very nice to

read

> > your story and I too am a newbie as they call us. This group of people

is

> > the greatest and yes I have learned a lot about RP since I joined the

group.

> > Hope to hear from you again.

> >

> > Glenda

> > Lots of Love

> >

> >

> > On Sun, 3 Sep 2000 10:58:23 -0000, Rpolychondritisegroups wrote:

> >

> > >

> > > Forwarded

> > >

> > > > Hello Heidi,

> > > >

> > > > I send many congratulations to your husband for his 65th birthday.

I

> > hope

> > > he

> > > > will enjoy his day and that he makes a sucessfull switch to a new

part

> > of

> > > his

> > > > life going into retirement. Many greetings also from Gaby.

> > > >

> > > > I have been very happy last Sunday when you phoned me. I suscribed

the

> > RP-

> > > goup

> > > > and get now as you told me every day lots of emails. Its for me

> > impossible

> > > to

> > > > follow all storys. So I`m deleting most of the mails immediately.

> > > >

> > > > I also want to say thank-you to Woods who first took notice

of me

> > and

> > > who

> > > > introduced me to you as I understood.

> > > >

> > > > Hello ,

> > > >

> > > > may I just call you in this way?

> > > >

> > > > I want to tell a little bit my story. It was October last year

when I

> > > started

> > > > with a cough that did not end. My doctor checked a lot and

identified a

> >

> > > narrow

> > > > trachea by CT. The diagnostic process took several months. All

together

> > I

> > > was 9

> > > > weeks in two hospitals, where I was checked completely. First no

> > specific

> > > > diagnosis could not be stated exept to have an idea of an

autoimmun

> > > disease.

> > > > That is why already in february this year a therapy wiht

prednisone was

> >

> > > started.

> > > > Finally in May a Professor in Heidelberg stated Polychondritis.

With me

> >

> > > only the

> > > > repiratory tract is involved, not nose or ears. And my problem is

> > " only "

> > > the

> > > > limited ventilation of my lungs. This is a severe change in my

life, as

> > I

> > > was

> > > > before a sportsman in my free time where I enjoyed jogging and

biking.

> > > Several

> > > > times I run Marathon distances. This is no longer possible now.

But I

> > try

> > > with

> > > > my wife to regain some fitness (Walking, biking on a tandem, power

> > > training). I

> > > > feel very well as I experience some progress.

> > > >

> > > > A trial to substitute prednisone by Imurek (Azathioprin) went

wrong as

> > to

> > > some

> > > > side effects (fever, vomiting, blood parameters). I am back now

with

> > > prednisone

> > > > on a level of 50 mg/day. The next trial will probably be with

> > Methotrexat.

> > > In

> > > > addition I inhale three times a day after the meals with an

expectorant

> > to

> > > keep

> > > > my trachea and bronchi clean from secretion. So my limited

pulmonary

> > > function

> > > > is kept on a level that I need no further support when I´m sitting

or

> > > walking.

> > > >

> > > > I´m 52 years old, married for 27 years with my wife Gaby. I have

two

> > > daughters

> > > > in the age of 19 and 20 years. The elder, Sabine, is making her

studies

> > on

> > > the

> > > > University of Karlsruhe, the younger just finished her bachelors

degree

> > and

> > > > start her study in October this year at the University of Mainz. I

am

> > by

> > > > profession a Chemist, working as a Manager in a fiber producing

> > company. My

> > > wife

> > > > Gaby is a teacher.

> > > >

> > > > Heidi told me, that there are also members of the group in Germany

and

> > > > Switzerland. Can you give me an adress or a e-mail-contact?

> > > > Heidi, as you told me, at the University of Erlangen (Hautklinik)

there

> >

> > > would be

> > > > some interest on RP. Do you know a name to contact? I would

appreciate

> > to

> > > have

> > > > some support and contacts more nearby.

> > > >

> > > > Heidi and , so far some information about my family and me. I

> > repeat

> > > that I

> > > > enjoyed to come into contact with you. I gives me hope to learn

better

> > to

> > > live

> > > > with RP.

> > > > Many greetings from Germany and a happy birthday to Heidis

husband!

> > > >

> > > > 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

> > >

> >

> >

> >

> >

> >

> > _______________________________________________________

> > Say Bye to Slow Internet!

> > http://www.home.com/xinbox/signup.html

> >

> >

> > 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

> >

> >

> >

>

>

>

_______________________________________________________

Say Bye to Slow Internet!

http://www.home.com/xinbox/signup.html

Link to comment
Share on other sites

Werner,

Welcome to the RP. list.It's so difficult having to give up the things we

love doing because of this disease. Hopefully

things will improve for you.

My name is Sandy and I live in Ohio. I have 5 kids and 5 grandkids.

I am on many different meds, Methotrexate, Prednisone,

Arava, Carafate, Bactrum, Minocin, folic acid and a

nebulizer to keep my lungs clear and Prilosec.

Looking forward to more of your posts.

Sandy

PS. My Grandmother was from Germany, her maiden name was Disch

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

-------------------------- eGroups Sponsor -------------------------~-~>

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---------------------------------------------------------------------_->Rpol

ychondritisegroups wrote:

> >

> > >

> > > Forwarded

> > >

> > > > Hello Heidi,

> > > >

> > > > I send many congratulations to your husband for his 65th birthday.

I

> > hope

> > > he

> > > > will enjoy his day and that he makes a sucessfull switch to a new

part

> > of

> > > his

> > > > life going into retirement. Many greetings also from Gaby.

> > > >

> > > > I have been very happy last Sunday when you phoned me. I suscribed

the

> > RP-

> > > goup

> > > > and get now as you told me every day lots of emails. Its for me

> > impossible

> > > to

> > > > follow all storys. So I`m deleting most of the mails immediately.

> > > >

> > > > I also want to say thank-you to Woods who first took notice

of me

> > and

> > > who

> > > > introduced me to you as I understood.

> > > >

> > > > Hello ,

> > > >

> > > > may I just call you in this way?

> > > >

> > > > I want to tell a little bit my story. It was October last year

when I

> > > started

> > > > with a cough that did not end. My doctor checked a lot and

identified a

> >

> > > narrow

> > > > trachea by CT. The diagnostic process took several months. All

together

> > I

> > > was 9

> > > > weeks in two hospitals, where I was checked completely. First no

> > specific

> > > > diagnosis could not be stated exept to have an idea of an

autoimmun

> > > disease.

> > > > That is why already in february this year a therapy wiht

prednisone was

> >

> > > started.

> > > > Finally in May a Professor in Heidelberg stated Polychondritis.

With me

> >

> > > only the

> > > > repiratory tract is involved, not nose or ears. And my problem is

> > " only "

> > > the

> > > > limited ventilation of my lungs. This is a severe change in my

life, as

> > I

> > > was

> > > > before a sportsman in my free time where I enjoyed jogging and

biking.

> > > Several

> > > > times I run Marathon distances. This is no longer possible now.

But I

> > try

> > > with

> > > > my wife to regain some fitness (Walking, biking on a tandem, power

> > > training). I

> > > > feel very well as I experience some progress.

> > > >

> > > > A trial to substitute prednisone by Imurek (Azathioprin) went

wrong as

> > to

> > > some

> > > > side effects (fever, vomiting, blood parameters). I am back now

with

> > > prednisone

> > > > on a level of 50 mg/day. The next trial will probably be with

> > Methotrexat.

> > > In

> > > > addition I inhale three times a day after the meals with an

expectorant

> > to

> > > keep

> > > > my trachea and bronchi clean from secretion. So my limited

pulmonary

> > > function

> > > > is kept on a level that I need no further support when I´m sitting

or

> > > walking.

> > > >

> > > > I´m 52 years old, married for 27 years with my wife Gaby. I have

two

> > > daughters

> > > > in the age of 19 and 20 years. The elder, Sabine, is making her

studies

> > on

> > > the

> > > > University of Karlsruhe, the younger just finished her bachelors

degree

> > and

> > > > start her study in October this year at the University of Mainz. I

am

> > by

> > > > profession a Chemist, working as a Manager in a fiber producing

> > company. My

> > > wife

> > > > Gaby is a teacher.

> > > >

> > > > Heidi told me, that there are also members of the group in Germany

and

> > > > Switzerland. Can you give me an adress or a e-mail-contact?

> > > > Heidi, as you told me, at the University of Erlangen (Hautklinik)

there

> >

> > > would be

> > > > some interest on RP. Do you know a name to contact? I would

appreciate

> > to

> > > have

> > > > some support and contacts more nearby.

> > > >

> > > > Heidi and , so far some information about my family and me. I

> > repeat

> > > that I

> > > > enjoyed to come into contact with you. I gives me hope to learn

better

> > to

> > > live

> > > > with RP.

> > > > Many greetings from Germany and a happy birthday to Heidis

husband!

> > > >

> > > > 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

> > >

> >

> >

> >

> >

> >

> > _______________________________________________________

> > Say Bye to Slow Internet!

> > http://www.home.com/xinbox/signup.html

> >

> >

> > 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

> >

> >

> >

>

>

>

_______________________________________________________

Say Bye to Slow Internet!

http://www.home.com/xinbox/signup.html

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

Link to comment
Share on other sites

Werner, from California here. My RP started with one red swollen

ear. They diagnosed me with cellulitis. It didn't come back for 1 year then

did it again, then again 6 weeks later. They had been treating me with

antibiotics. Finally dx with RP. Was put on Pred for 2 weeks. It came back

again and I was put back on pred and vioxx. That kept it in control for a

while then the flares started back and I was put on Methotexate in Jan 2000

along with pred and folic acid and calcium. Is still have flares and now

they have appeared in my ribs, nose, and now I think my throat. I up my pred

when I feel a flare coming on and it usually takes care of it. I started out

on 80 mg of pred and am now down to 9mg, or was until last week. I had to up

it. My goal is to get totally off the pred and then I'll start working on

the decreasing of the methotrexate. Always an optimistic. I'm sure with the

right medication you will be up and running again in no time. I also have

fibromyalgia, chronic fatigue and valvular heart disease. So the RP isn't

all that is making me tired. I believe with all the information that we have

available in this group, that we will educate our doctors and we can win this

battle. We have strength in numbers and in our humor.

Please take care and ask all the ? you need to.

Hope your weekend is a great one.

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Werner, from California here. My RP started with one red swollen

ear. They diagnosed me with cellulitis. It didn't come back for 1 year then

did it again, then again 6 weeks later. They had been treating me with

antibiotics. Finally dx with RP. Was put on Pred for 2 weeks. It came back

again and I was put back on pred and vioxx. That kept it in control for a

while then the flares started back and I was put on Methotexate in Jan 2000

along with pred and folic acid and calcium. Is still have flares and now

they have appeared in my ribs, nose, and now I think my throat. I up my pred

when I feel a flare coming on and it usually takes care of it. I started out

on 80 mg of pred and am now down to 9mg, or was until last week. I had to up

it. My goal is to get totally off the pred and then I'll start working on

the decreasing of the methotrexate. Always an optimistic. I'm sure with the

right medication you will be up and running again in no time. I also have

fibromyalgia, chronic fatigue and valvular heart disease. So the RP isn't

all that is making me tired. I believe with all the information that we have

available in this group, that we will educate our doctors and we can win this

battle. We have strength in numbers and in our humor.

Please take care and ask all the ? you need to.

Hope your weekend is a great one.

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,

Arava is an immunosuppressant. I take this along with Metho.

Hugs,

Sandy

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

> -------------------------- eGroups Sponsor

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>

> Sandy, I know that you told me before, but here goes that memory thing

> again.LOL What is Arava for? Is it an anti inflamatory?

>

> Love

>

>

> 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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