To Anyone - I'm a new member with lots of questions

[Guest guest]

To anyone,

I have just found this group. I was diagnosed with RP November

2001 and have been on Pred. since along with Naproxen. I have been

decreasing my dosage gradually only to have to up it again. I am now

at 5 mg per day. My hope is to get off Pred. Has anyone had sucess

getting off Pred.? Does any one have any suggestions to help supress

this disease - diet etc? It is very hard to find information related

to this disease. I was a healthy 38 year old in Aug of 2001 when I

had my gall blatter removed and developed a bile leak which put me

into the hospital for two weeks - I was very very sick - after

recovering I developed a painful ear which was treated for 4 weeks as

an external ear infection (On antbiotics for 2 months) - ENT had me

put vinegar in my ear because he thought I had yeast infection from

anitbiotics. Infectious Disease Doctor finally sent me to

Dermatologist who immediately knew what I had - RP - Am now being

treat by Rheumatologist.

Am I in la la land thinking this disease will subside any and I will

be able to get off Steriods? My ears are fine now but I do tend to

get hoarse when I do not take the Naproxen. My Dr. is not the most

informative person - I feel out of control and for a person who likes

to be in control, this is terrible.

I would love to hear from anyone who can help me.

Barbara

[Guest guest]

Hi Marie,

Thank

you for your response. I am sorry

to hear that your

children have this disease. What I

know

About

it is very little but I thought it normally affected middle aged people. I have one daughter 2 1/2 and

I

would be devastated if she came down with this. My heart goes out to you and your

family.

How

do they handle this disease?

Barbara

Re: To

Anyone - I'm a new member with lots of questions

WELCOME BARBARA.

I think you can find all that you need I n this group

I'll not very helpfull for you because i'm french and my english

have to be improve I'm

44 i have four children and 3 with rp.Ben 11y, coralie 14 and nicolas 19 hopefully

24 is out of rp LOL.

bienvenue de France.

Marie-pia

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

Your

use of Yahoo! Groups is subject to the Yahoo! Terms of Service.

[Guest guest]

Barbara, welcome to the group. Sorry I'm late, I have been out of

town and haven't gotten all my mail. YOu have found a wonderful

group. Gosh, please keep on asking as many questions as you want.

This is how we all learn.

Yes, there are quite a few who are off the pred. I think that is a

goal for all of us. I was down to 6mg from 80 and just raised it

back to 10mg, but am very hopeful that I will make it off completely.

I was treated for cellulitus when my ear first flared. They treated

it the same way the second time and that is when I insisted on going

to and ENT. He dx me with RP. That was in 1998.

Finding the right team of doctors it the hard part, or at least it

was for me. For most of us we do need a few specialists. I have a

Primary Care, Cardiologist, Rheumatologist, Pulmonologist,

Opthamologis, ENT, I think that is it. LOL Most of them I only see

twice a year and that is to just check out this ol body. LOL

I am a believer in preventative medicine and want to stop something

before it starts. LOL

Where are you from? I live in Calif. We are scattered all around

the world and you will find out so much info. Just keep asking and

telling us a littla about yourself.

Looking forward to getting to know you better.

hugs

- In Rpolychondritis@y..., " cpamomma30179 " <bfields@h...> wrote:

> To anyone,

> I have just found this group. I was diagnosed with RP

November

> 2001 and have been on Pred. since along with Naproxen. I have been

> decreasing my dosage gradually only to have to up it again. I am

now

> at 5 mg per day

[Guest guest]

barbara,

It' hard for mother. of course.Coralie handle rp better than his brothers because sh''s ill since 12 y.

IT's harder for ben because the dr; dicovered her illness in 1998.And Nicolas was in "bad mood" since 2000 because of RP.

what about you ?

amitiés

M.P.

[Guest guest]

Marie-pia,

            I

am a trooper - I try not to let anything get me down.  I deal with issues as they come up to the

best of my ability - This disease though threw me for a loop - because it is so

uncommon and there was very little information to be had - what I did find was

not very promising - " live threatening " disease - But since I have

found additional information and my sister who is a nurse has helped me

some.  But there is still a lot I am

curious about - and I hope to find additional answers from this great group.

I would think

it would be hard for a child to deal with such a disease and the related side

effects of the medications you must take to control it.   Life with children is a very busy life - but

with 4 children and 3 with RP I can only imagine what a strong woman you are to

handle such.  It would be hard not to be

angry,  if I

were you.    

            I

hope your children are doing well and that you are also well.  By the way your English is just fine.  It's great corresponding to someone so far away  ( I am in the USA - Atlanta, Georgia). Where would we be without the internet

and its vast knowledge.  Take care

Always,

Barbara Fields

Re: To

Anyone - I'm a new member with lots of questions

barbara,

It' hard for mother. of course.Coralie handle rp better than his brothers

because sh''s ill since 12 y.

IT's harder for ben because the dr; dicovered her illness in 1998.And Nicolas

was in " bad mood " since 2000 because of RP.

what about you ?

amitiés

M.P.

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

Your

use of Yahoo! Groups is subject to the Yahoo! Terms of Service.