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Re: Welcome Ann

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In a message dated 7/29/01 9:50:44 PM Pacific Daylight Time, mokie@...

writes:

<<

recently changed insurance plans so this was a new doctor to me. He

took one look at my ear and told me I had RP and to go home and look

it up on the internet. Which I did then made app. to talk to him >>

Ann, welcome to the group... YOu have come to the right place!! Boy it

sounds like you went to the dr that diagnosed me.LOL He was an ENT and told

me to look it up too. I didn't have a computer at the time, and when I

finally did look it up boy was I ever scared.... He said that he knew how to

dx it but didn't know how to treat it..LOL Well, needless to say, a

million drs. later, I found out more information from this group than from

any doctor.. In fact I take the informatin from here to my doctors now....

At least I've found some that are interested and willing to listen and read

what I take in.

No, RP will not just go away..... You need to be treated for it... It is not

as terrible as some of the information says....You will see that it effects

us all differently and we are all on a variety of different drugs... Some

work better for some than others. Its just kind of a try and find out which

one works for you... Prednisone is usually the first drug of choice... But

there are others, methotrexate, Imuran, Plaquinel, Dapsone, etc... the list

goes on.......I have been on pred for three years straight and am now trying

to get off of it.. It is now causing me more harm than good... It is a slow

process to get off of it when you have taken it long term, but I am

determined to do it... So far, so good... I am down to 10mg a day from 80mg I

was once on.

First thing is to find a good dr that is willing to work with you and get you

started on a treatment ASAP...Every time you flare, there is damage done...

Where do you live? Maybe someone in the group knows of a dr close to you...

Please keep posting and asking questions... You will find a great deal of

information here and in the process make a lot of wonderful friends... We

have over 200 members so there are lots of shoulders to vent to...LOL We

have lots of laughs too and that is so important.

Keep in touch and ask, ask , ask...... that's what we are all here for. If

we don't know the answer, someone will get you headed in the right direction

to find it..

Again welcome, can't wait to get to know you better.

hugs

Clauda

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