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Hi Kathi - I have never had kidney stones or kidney infections. From the

time I was diagnosed with RP last November, my urine tests just always came

back with traces of blood. Even when I had a kidney biopsy last December I

had never had any symptoms where I could say my kidneys bothered me. The

only thing that happened that may be related is in March I went to the

hospital with what they thought was appendicitis and then after a CT they

decided it was a kidney stone (turned out it wasn't). Never really knew

what caused all the pain in my right side but a week later my left side did

the same thing. Still don't know for sure but both my nephrologist and

rehumatologist suspect it was a kidney flare caused by the RP.

I'm seeing my rheumatologist next week and will ask her for any information

I might pass on to you about renal involvement. I definitely think you

should bring it up with your doctor(s). The only thing I can tell you is

that my nephrologist prescribed blood pressure medicine to help insulate the

kidneys. He said anytime kidneys are having problems, it directly affects

blood pressure. Also, since I've been taking Methotrexate there is less

blood in my urine.

This has been very educational -- never knew what a nephrologist was, let

alone thought I'd use one.

Best wishes for a Happy Turkey Day!

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Hi Kathi - I have never had kidney stones or kidney infections. From the

time I was diagnosed with RP last November, my urine tests just always came

back with traces of blood. Even when I had a kidney biopsy last December I

had never had any symptoms where I could say my kidneys bothered me. The

only thing that happened that may be related is in March I went to the

hospital with what they thought was appendicitis and then after a CT they

decided it was a kidney stone (turned out it wasn't). Never really knew

what caused all the pain in my right side but a week later my left side did

the same thing. Still don't know for sure but both my nephrologist and

rehumatologist suspect it was a kidney flare caused by the RP.

I'm seeing my rheumatologist next week and will ask her for any information

I might pass on to you about renal involvement. I definitely think you

should bring it up with your doctor(s). The only thing I can tell you is

that my nephrologist prescribed blood pressure medicine to help insulate the

kidneys. He said anytime kidneys are having problems, it directly affects

blood pressure. Also, since I've been taking Methotrexate there is less

blood in my urine.

This has been very educational -- never knew what a nephrologist was, let

alone thought I'd use one.

Best wishes for a Happy Turkey Day!

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In a message dated 11/27/01 2:36:32 PM Pacific Standard Time,

angelhearts61@... writes:

<< 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

>>

Kathi, see, I should read all my mail before replying. LOL I was on metho

for a year and it didn't help me at all. Couldn't get the pred down and was

still flaring. Was put on Imuran and was praying it would work... It made me

terribly sick...think I'm the only one it has done that to. LOL I tried it

two time and was in bed and vomiting for two days none stop. The new drs.

just put me on Plaquenil. Haven't started it yet... Im a chicken. LOL Will

try this week.

This is just my opinion, but I think that you need to be on something

stronger than tums for your stomach while on pred and metho. Has your dr

ever mentions Prevacid or Prilosec or somthing similar. It is sooo important

to protect your stomach with pred and the other drugs. Just my 2 cents.

I sure hope you are feeling better soon.... Know I'm thinking of you.

hugs

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In a message dated 11/27/01 2:36:32 PM Pacific Standard Time,

angelhearts61@... writes:

<< 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

>>

Kathi, see, I should read all my mail before replying. LOL I was on metho

for a year and it didn't help me at all. Couldn't get the pred down and was

still flaring. Was put on Imuran and was praying it would work... It made me

terribly sick...think I'm the only one it has done that to. LOL I tried it

two time and was in bed and vomiting for two days none stop. The new drs.

just put me on Plaquenil. Haven't started it yet... Im a chicken. LOL Will

try this week.

This is just my opinion, but I think that you need to be on something

stronger than tums for your stomach while on pred and metho. Has your dr

ever mentions Prevacid or Prilosec or somthing similar. It is sooo important

to protect your stomach with pred and the other drugs. Just my 2 cents.

I sure hope you are feeling better soon.... Know I'm thinking of you.

hugs

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Kathi

sure, the more the merrier, not sure what my husband

or dogs would say, but why not.

dawn

--- Kathi Goodwin wrote:

> Dawn,

> I used to live in Virginia, but always went camping

> in West Virginia!! What

> beautiful country that is!! By the way, if I move

> in, could I bring my

> husband and children???? They have this tendency to

> follow me whereever I

> go!!!

> Kathi

>

> >

> >Reply-To: Rpolychondritis

> >To: Rpolychondritis

> >Subject: Re: [Rpolychondritis

> kathi

> >Date: Tue, 27 Nov 2001 04:22:15 -0800 (PST)

> >

> >kathi

> >i live in west virginia. come on down. would

> love

> >to meet you.

> >

> >dawn

> >\

> >--- Kathi Goodwin

> wrote:

> > > Okay Dawn-- where do you live?? The way I feel

> > > right now, I may just move

> > > in with you!!

> > > Kathi

> > >

> > >

> > > >

> > > >Reply-To: Rpolychondritis

> > > >To: Rpolychondritis

> > > >Subject: Re: Heidi & Dawn

> > > >Date: Mon, 26 Nov 2001 12:41:57 -0800 (PST)

> > > >

> > > >Oh lu

> > > >not flaring, anything but that. if i lived

> closer

> > > i

> > > >would come and help. how about if you move up

> > > here,

> > > >you and claudia and kathi, and well heck how

> about

> > > the

> > > >whole group, then we could take care of each

> other.

> > > >dawn

> > > >

> > > >--- Lu1953@... wrote:

> > > > > LOL Oh Dawn,

> > > > > I'm trying, I can't do much without just

> > > totally

> > > > > giving out. We did put up

> > > > > the tree, no, it's not finished but up.

> > > Christmas

> > > > > will be at my house again

> > > > > this year. Gosh I have to get on the ball.

> Punch

> > > me

> > > > > a big kick from your

> > > > > house to mine.

> > > > > But don't kick my ears I am flaring again. I

> > > promise

> > > > > I have been taking my

> > > > > medicine.

> > > > > Love you

> > > > > Lu

> > > > >

> > > > > > NOW IF WE CAN GET

> > > > > > CLAUDIA AND LU ON THE BALL WE'LL HAVE IT

> MADE.

> > > > > >

> > > > > > DAWN

> > > > > >

> > > > > >

> > > > >

> > > > >

> > > > >

> > > >

> > > >

> > >

> >__________________________________________________

> > > >

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Kathi

sure, the more the merrier, not sure what my husband

or dogs would say, but why not.

dawn

--- Kathi Goodwin wrote:

> Dawn,

> I used to live in Virginia, but always went camping

> in West Virginia!! What

> beautiful country that is!! By the way, if I move

> in, could I bring my

> husband and children???? They have this tendency to

> follow me whereever I

> go!!!

> Kathi

>

> >

> >Reply-To: Rpolychondritis

> >To: Rpolychondritis

> >Subject: Re: [Rpolychondritis

> kathi

> >Date: Tue, 27 Nov 2001 04:22:15 -0800 (PST)

> >

> >kathi

> >i live in west virginia. come on down. would

> love

> >to meet you.

> >

> >dawn

> >\

> >--- Kathi Goodwin

> wrote:

> > > Okay Dawn-- where do you live?? The way I feel

> > > right now, I may just move

> > > in with you!!

> > > Kathi

> > >

> > >

> > > >

> > > >Reply-To: Rpolychondritis

> > > >To: Rpolychondritis

> > > >Subject: Re: Heidi & Dawn

> > > >Date: Mon, 26 Nov 2001 12:41:57 -0800 (PST)

> > > >

> > > >Oh lu

> > > >not flaring, anything but that. if i lived

> closer

> > > i

> > > >would come and help. how about if you move up

> > > here,

> > > >you and claudia and kathi, and well heck how

> about

> > > the

> > > >whole group, then we could take care of each

> other.

> > > >dawn

> > > >

> > > >--- Lu1953@... wrote:

> > > > > LOL Oh Dawn,

> > > > > I'm trying, I can't do much without just

> > > totally

> > > > > giving out. We did put up

> > > > > the tree, no, it's not finished but up.

> > > Christmas

> > > > > will be at my house again

> > > > > this year. Gosh I have to get on the ball.

> Punch

> > > me

> > > > > a big kick from your

> > > > > house to mine.

> > > > > But don't kick my ears I am flaring again. I

> > > promise

> > > > > I have been taking my

> > > > > medicine.

> > > > > Love you

> > > > > Lu

> > > > >

> > > > > > NOW IF WE CAN GET

> > > > > > CLAUDIA AND LU ON THE BALL WE'LL HAVE IT

> MADE.

> > > > > >

> > > > > > DAWN

> > > > > >

> > > > > >

> > > > >

> > > > >

> > > > >

> > > >

> > > >

> > >

> >__________________________________________________

> > > >

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  • 2 weeks later...

Kathi, they sprayed a whole bunch of stuff down my nose....I mean I was numb

for hours..LOL I couldn't even swallow, or feel myselfswallow...Don't know

what it was, but it really worked well. I too have a sensitive gag

reflex..... but this was great. They waited about 15 minutes for it to take

and then went through my nose and down the throat.

The Plaquenil is doing fine... I don't know if it is working, but it isn't

making me sick. (and that's a good sign) lol

hugs

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Kathi, they sprayed a whole bunch of stuff down my nose....I mean I was numb

for hours..LOL I couldn't even swallow, or feel myselfswallow...Don't know

what it was, but it really worked well. I too have a sensitive gag

reflex..... but this was great. They waited about 15 minutes for it to take

and then went through my nose and down the throat.

The Plaquenil is doing fine... I don't know if it is working, but it isn't

making me sick. (and that's a good sign) lol

hugs

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In a message dated 12/7/01 4:00:33 PM Pacific Standard Time,

angelhearts61@... writes:

<< Unless of course, they are dealing

with the purchase of ashtrays or toilet seats!!

Kathi >>

Kathi. LOL I'll tell you what... next time I'm there I will just happen to

have that little bottle drop into my purse and I will send it to you... You

can take it to your military drs and show them what they should be doing. LOL

You poor thing... Don't think I could have done it like you did...You get a

great BIG Star for bravery.

hugs

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In a message dated 12/7/01 4:00:33 PM Pacific Standard Time,

angelhearts61@... writes:

<< Unless of course, they are dealing

with the purchase of ashtrays or toilet seats!!

Kathi >>

Kathi. LOL I'll tell you what... next time I'm there I will just happen to

have that little bottle drop into my purse and I will send it to you... You

can take it to your military drs and show them what they should be doing. LOL

You poor thing... Don't think I could have done it like you did...You get a

great BIG Star for bravery.

hugs

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