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In a message dated 11/28/01 3:35:49 PM Pacific Standard Time,

angelhearts61@... writes:

<< and won't let me do it

UNLESS DR. TRENTHAM says to. >>

Kathi, your dr sounds wonderful... she sounds like a real keeper. I sure

wish she would put you on something to protect your stomach. that scares

me... I also had great results with the folic acid with the metho as to the

side effects. Dr T. is a wonderful dr but we have to have some lee way

here..We are all different. I was put on Prevacid because they thought my

hoarseness was caused by acid reflux too. NOT. It didn't help my throat

but sure helped my stomach. So I have stayed on it...Haven't had any

problems with my stomach since..

I sure hope they can come up with something to help you... I know how

miserable it can be.. Maybe if you copied some of the posts from members,

......do you think she'd read those.... There are some wonderful old posts

from Hobb to newbies in the archives...if you can't find them I will

send them to you...

Hope you have good news on the 13th....

Sending lots of hugs and support

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In a message dated 11/28/01 3:35:49 PM Pacific Standard Time,

angelhearts61@... writes:

<< and won't let me do it

UNLESS DR. TRENTHAM says to. >>

Kathi, your dr sounds wonderful... she sounds like a real keeper. I sure

wish she would put you on something to protect your stomach. that scares

me... I also had great results with the folic acid with the metho as to the

side effects. Dr T. is a wonderful dr but we have to have some lee way

here..We are all different. I was put on Prevacid because they thought my

hoarseness was caused by acid reflux too. NOT. It didn't help my throat

but sure helped my stomach. So I have stayed on it...Haven't had any

problems with my stomach since..

I sure hope they can come up with something to help you... I know how

miserable it can be.. Maybe if you copied some of the posts from members,

......do you think she'd read those.... There are some wonderful old posts

from Hobb to newbies in the archives...if you can't find them I will

send them to you...

Hope you have good news on the 13th....

Sending lots of hugs and support

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Lu,

The zofran is of little help to me with the nausea. SOMETIMES, but not very

often, I have some nausea associated with the methotrexate and the zofran

does help for that. That is a totally different type of nausea though. I

can't describe the difference, I just know it when I feel it. No, I have

never been on Imuran. The Dr. I see here is a Rhuematologist who has NO

experience with RP. She is a wonderful Dr./person and is one of the most

compassionate human beings (especially for a Dr.--and I can say that because

I am a nurse) that I have ever met. She just won't do anything not

recommended by Dr. Trentham and that is where my problem is. He doesn't

prescribe Folic Acid or any medications for protection of your stomache so

she won't write me a prescription for them. I was on Prilosec for about 3

years because they thought I was loosing my voice because of Reflux disease

but it didn't help at all-- my voice or the nausea. When I called my Dr. on

Monday morning about the 12 days of N/V she did ask me if I was having a

heart burn sensation-- which I am not-- and that if I was she thought I

should be on reglan. She ended up giving me compazine because I needed

something that was going to work a lot faster than reglan but when I go back

to the Dr. on Dec. 13th, I am going to ask her about the reglan. She is

such a sweetie but has no clue about RP. She doesn't realize that I have to

increase my Prednisone at the first sign of a flare-- and won't let me do it

UNLESS DR. TRENTHAM says to. My other big barrier is the fact that I have

little to no voice to be able to be able to really communicate with her. I

am not sure what the answer is, I just know that Iam about over the edge

with all of this. The only thing the Dr.s want to discuss with me is

quitting work and going on disability. I am having trouble accepting that

at this point. I don't feel like we have done enough to try and get control

of this disease. Maybe I am wrong about working, but.....

Kathi

>From: Lu1953@...

>Reply-To: Rpolychondritis

>To: Rpolychondritis

>Subject: Re: Lu/Kathi

>Date: Wed, 28 Nov 2001 17:06:14 EST

>

>Hi Kathi,

>Wow, I can't believe that was your first symptom. What a horrible one to

>have, there is nothing worse than nausea..or ear pain. or heck all of it.

>Have you ever been on Imuran? That is what they switched me to, although

> in our group couldn't take it, It made her sick. It helps, I have

>less flares but I still do flare just not as much. Maybe a different drug

>would help some. Did the zofran not help either? I lived on that stuff

>while

>on metho, and It helped some. What kind of doctor are you using is he a

>rheumatologist?

>love you,

>Lu

>

>

> > medicines haven't changed it a bit. I do wonder if I should change to

> > something besides the methotrexate, not because of the nausea, but

>becasue

> > I

> > just don't seem to be improving. I just don't know what to try next.

>Any

> > input would be greatful!!

> > Kathi

> >

> >

>

>

_________________________________________________________________

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Lu,

The zofran is of little help to me with the nausea. SOMETIMES, but not very

often, I have some nausea associated with the methotrexate and the zofran

does help for that. That is a totally different type of nausea though. I

can't describe the difference, I just know it when I feel it. No, I have

never been on Imuran. The Dr. I see here is a Rhuematologist who has NO

experience with RP. She is a wonderful Dr./person and is one of the most

compassionate human beings (especially for a Dr.--and I can say that because

I am a nurse) that I have ever met. She just won't do anything not

recommended by Dr. Trentham and that is where my problem is. He doesn't

prescribe Folic Acid or any medications for protection of your stomache so

she won't write me a prescription for them. I was on Prilosec for about 3

years because they thought I was loosing my voice because of Reflux disease

but it didn't help at all-- my voice or the nausea. When I called my Dr. on

Monday morning about the 12 days of N/V she did ask me if I was having a

heart burn sensation-- which I am not-- and that if I was she thought I

should be on reglan. She ended up giving me compazine because I needed

something that was going to work a lot faster than reglan but when I go back

to the Dr. on Dec. 13th, I am going to ask her about the reglan. She is

such a sweetie but has no clue about RP. She doesn't realize that I have to

increase my Prednisone at the first sign of a flare-- and won't let me do it

UNLESS DR. TRENTHAM says to. My other big barrier is the fact that I have

little to no voice to be able to be able to really communicate with her. I

am not sure what the answer is, I just know that Iam about over the edge

with all of this. The only thing the Dr.s want to discuss with me is

quitting work and going on disability. I am having trouble accepting that

at this point. I don't feel like we have done enough to try and get control

of this disease. Maybe I am wrong about working, but.....

Kathi

>From: Lu1953@...

>Reply-To: Rpolychondritis

>To: Rpolychondritis

>Subject: Re: Lu/Kathi

>Date: Wed, 28 Nov 2001 17:06:14 EST

>

>Hi Kathi,

>Wow, I can't believe that was your first symptom. What a horrible one to

>have, there is nothing worse than nausea..or ear pain. or heck all of it.

>Have you ever been on Imuran? That is what they switched me to, although

> in our group couldn't take it, It made her sick. It helps, I have

>less flares but I still do flare just not as much. Maybe a different drug

>would help some. Did the zofran not help either? I lived on that stuff

>while

>on metho, and It helped some. What kind of doctor are you using is he a

>rheumatologist?

>love you,

>Lu

>

>

> > medicines haven't changed it a bit. I do wonder if I should change to

> > something besides the methotrexate, not because of the nausea, but

>becasue

> > I

> > just don't seem to be improving. I just don't know what to try next.

>Any

> > input would be greatful!!

> > Kathi

> >

> >

>

>

_________________________________________________________________

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Hey lu

you aren't far off track, it was named after my

husbands great, great, great,???? grandfather, his

name was , get this, MORGAN , funny right.

dawn

--- Lu1953@... wrote:

> In a message dated 11/27/2001 2:10:40 PM Central

> Standard Time,

> dmorgan26347@... writes:

>

>

> > i live close to morgantown, in a small town next

> to

> > grafton, wv. home of the mothers day shrine.

> > if you get this way give a yell maybe we can get

> > together

> >

> > dawn

> >

> >

>

> Dawn is it named after you? town?

> Lu

>

__________________________________________________

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Hey lu

you aren't far off track, it was named after my

husbands great, great, great,???? grandfather, his

name was , get this, MORGAN , funny right.

dawn

--- Lu1953@... wrote:

> In a message dated 11/27/2001 2:10:40 PM Central

> Standard Time,

> dmorgan26347@... writes:

>

>

> > i live close to morgantown, in a small town next

> to

> > grafton, wv. home of the mothers day shrine.

> > if you get this way give a yell maybe we can get

> > together

> >

> > dawn

> >

> >

>

> Dawn is it named after you? town?

> Lu

>

__________________________________________________

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Wow Dawn, They must have had trouble thinking of any other names. lol huh? lol yes, its funny. I have been searching my family tree lately and it has been a lot of fun.

How are you feeling? Are you doing okay? Oh at least you can rest! You have your shopping done. lol

Love ya

Lu

Hey lu

you aren't far off track, it was named after my

husbands great, great, great,???? grandfather, his

name was , get this, MORGAN , funny right.

dawn

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Wow Dawn, They must have had trouble thinking of any other names. lol huh? lol yes, its funny. I have been searching my family tree lately and it has been a lot of fun.

How are you feeling? Are you doing okay? Oh at least you can rest! You have your shopping done. lol

Love ya

Lu

Hey lu

you aren't far off track, it was named after my

husbands great, great, great,???? grandfather, his

name was , get this, MORGAN , funny right.

dawn

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happy birthday to you

happy birthday to you

happy birthday to luuuuu

happy birthday to you

and many more--- Rpolychondritis wrote: > > We would like to remind you of this upcoming event. > > Birthday Announcement > > Date: Tuesday, December 4, 2001 > Time: All Day > > Today is Lu's birthday. > HAPPY BIRTHDAY LU!!!!! > > > > >

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happy birthday to you

happy birthday to you

happy birthday to luuuuu

happy birthday to you

and many more--- Rpolychondritis wrote: > > We would like to remind you of this upcoming event. > > Birthday Announcement > > Date: Tuesday, December 4, 2001 > Time: All Day > > Today is Lu's birthday. > HAPPY BIRTHDAY LU!!!!! > > > > >

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