New Member

[Guest guest]

Welcome Judy, I'm and I am 49 and live in California. I was dx

almost 2 years ago. Mine started with just my one ear. They treated it as

cellulitis with antibiotics. I didn't have my second flare for one year

almost to the day. This time nothing seemed to work. I was sent to and ENT

and he dx me with RP. I know nothing about it or had ever heard of it, but

hey, how serious can a red ear be??? It might hurt like heck, but the

prednisone will take care of it...... Well it did for awhile, then they added

vioxx. that worked well too, then when that stopped working they put me on

metho and pred. I've been on these since Jan. Still adjusting doses of the

metho and have been trying to wean myself off the pred but I get down to 10

mg and flare. I know have flares in my ears, nose, ribs. My throat has been

bothering me, but haven't been dx with anything in my throat.

Everyone is scared when they join the group. You hear horrible stories and

are scared to death. Progress is being made everyday. This is a controlable

disease if caught early. Sounds like you have some wonderful doctors.

Please ask all the questions that you want. this is how we all learn new

things. Someone will give you the answer or at least tell you where to look.

YOu will be amazed at all we have in common. We all have different symptoms

and are treated by different medications. No one thing works for all.

Feel free to vent, rant, rave or whatever you need. We are here for you. We

encourage humor. This is what gets most of us by and helps to forget RP for

awhile.

We talk about our families, hobbies, work, whatever you want. You will see!

You may not know it yet, but you have just aquired 150+ new relatives.LOL

We'll be there for Thanksgiving.LOL

Again welcome to the most wondeful group there is. And rememeber to just

yell if you need something. Don't ever think that you are buttin in,

Glenda, Heidi and a few others have already taught us how to do that. So

that's just one less thing you have to learn.LOL

Please take care and remember that RP is not the end of the world. Just keep

it under control.

Hugs

C

[Guest guest]

Liz, so good to finally hear from you. I really miss your posts. Glad to

hear that you are doing so well. Are you staying out of trouble???????

Hope the girls keep their eyes on you and make you behave.LOL

How's the puppy doing. Getting big I bet. Please continue to stay well

and know that I think of you often.

Hugs

[Guest guest]

Hello Judy, nice to meet you, sorry you have RP. Any

chronic illness is difficult to cope with, personally

I find that understanding what is going on helps, this

group certainly helps!! I find I am not nearly as

scared as I was initially - everyone is different, but

if you and your rheumy find a good combination of meds

that suit you, your symptoms will damp down and quite

a lot of the time you can get on with your life. I

feel much better than before I was diagnosed. I take

20mg methotrexate, weekly, 50mg Imuran daily, and at

the moment am trying to get odd prednisone as I am

also diabetic and pred increases your blood sugar

levels. I also have asthma and an underactive

thyroid. However most of the time I feel pretty well,

I try and work out - walking and light weights, or

stationary bike. I find this helps me enormously,

except when my knees are playing up!! I also take a

load of other stuff (i.e. lipitor, metformin,

estrogen, progestin,calcium, vitamin D, multivitamin,

zantac, Xenical (for weight loss) EffexorXR

(antidepressant) but overall it seems to be working.

When you go to see Dr T make a list of questions you

want to ask, so you don't forget.

I live mostly in Saudi Arabia (I work for a Saudi

family) but we are in California as my boss has had

extensive back surgery, she is doing well but the docs

want her to stay here a bit longer, so of course we

are. I have also had to postpone my vacation, ah

well, these things are sent to try us! I have been

offline for a while and am so happy to be back - the

people on this group are like family and I really

missed everyone. The main problem is finding time to

read and send emails!!

Lots of love to everyone, I hope you are all as well

as possibe, Love Liz

--- JOstry93@... wrote:

> Thanks, I wasn't sure if I could jump right in. I

> guess I'm lucky(?) my RP

> was diagnosed quickly. I got a truly horrible

> sunburn in San Diego, when I

> got home to Hoffman Estates, IL and most of the

> other symptons had healed, my

> ears were still making me crazy from the pain. PC

> tried Prednisone which

> worked so long as the dose was high, every time he

> tried to bring it down,

> the pain came back. Sent me to the Rheumatologist

> who sent be for a biopsy,

> I couldn't believe he was biopsying my ears! Came

> back as RP and I've been

> on methotrexate ever since. It wasn't doing

> anything until he increased the

> dosage, now my ears feel much better...which my

> nervous system did.

>

> Some of your messages mentiond Dr. Trentham, I have

> an appointment with him

> on 11/29. Not sure what I want to hear, that I'veeen

> misdiagnosed and I'll be

> just fine would be nice, but I'm not expecting it.

> How did you all handle

> this? Do you learn to live with the fear? or what?

>

> I could certainly use some encouragement, this is

> pretty frightening. I've

> been trying to pretend it's nothing and it will go

> away, so far that has not

> been very effective. I'd love to hear how you all

> deal with this.

>

> Judy

>

__________________________________________________

[Guest guest]

I think what scares me the most is how much I don't know. I didn't realize

that my burning ears were part of the RP. Thought I was getting mega hot

flashes in my ears - why, why not. Now I'll not only get hot flashes when

I'm sitting in a meeting, but hot ears!! At least, with a hot nose, I could

do a Rudolph imitation, but who has hot ears besides us?

So far the increased dosage of Metho seems to be working - up from 4 pills to

6 - just once a week - which is not bad and for which I am grateful. When I

saw those pix of ears and noses, it scared me to death. One other thing I

got which is related to the RP is IRITIS - ever heard of it? My opthomoligist

said it was in infection in my eyeball. The joy, the joy!

Oh, well, I'll just lift my double chin and keep on going. Who said life was

a beauty contest? Every day I keep moving is a beautiful day.

Jere's to beautiful days for all of us!

XCan I say LOL yet, being a newby?

[Guest guest]

Just a thought, I've had three unexplained strokes. The latest thought is

that it was related to my Premarin - which I've since had to stop (hence the

hot flashes). I wonder if you should ask your Dr if it exacerbates your RP?

Thanks for the idea about the questions. If anyone has some specific ones,

please send them my way...I'd hate to spend all this time and money goint to

Boston to sit there and go 'duh'.

LOL Judy,

[Guest guest]

Sandy here,

I get hot ears. Sometimes I can tell when they are going to flare because

they itch first.

I didn't know about RP either, I had ear flares for ten years before I was

DX. Kept telling my Doc my ears burned but she ignored it. Told me all my

rib and joint pain was from Fibro. I started to develop saddlenose and

finally got dx.

Hugs,

Sandy

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

> I think what scares me the most is how much I don't know. I didn't

realize

> that my burning ears were part of the RP. Thought I was getting mega hot

> flashes in my ears - why, why not. Now I'll not only get hot flashes

when

> I'm sitting in a meeting, but hot ears!! At least, with a hot nose, I

could

> do a Rudolph imitation, but who has hot ears besides us?

>

> So far the increased dosage of Metho seems to be working - up from 4 pills

to

> 6 - just once a week - which is not bad and for which I am grateful. When

I

> saw those pix of ears and noses, it scared me to death. One other thing

I

> got which is related to the RP is IRITIS - ever heard of it? My

opthomoligist

> said it was in infection in my eyeball. The joy, the joy!

>

> Oh, well, I'll just lift my double chin and keep on going. Who said life

was

> a beauty contest? Every day I keep moving is a beautiful day.

>

> Jere's to beautiful days for all of us!

>

> XCan I say LOL yet, being a newby?

>

>

> 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

>

[Guest guest]

Maybe we can take a poll, all those with flaming ears sign here!

[Guest guest]

Hi !

Welcome to the group! I'm SO happy you finally got to sign on. I think you

can go to the RP and put yourself on digest mode --if not, one of the sart

people like will probably help you out.

Can't imagine living for 30+ years with burning in the ears. Well, maybe

I'm beginning to be able to.

Thanks again for signing on. I think you have so much to offer us!

Love

Carolyn

new member

> Hi, everyone-- I'm the new member from the Boston area. I may be the

> longest survivor of polychondritis since I have had it for 33 years. It

took

> three months and about three dozen doctors [lucky that I was in a good

> medical center] before they told me that I was the 76th case reported in

this

> country. Oh, the attention I got-- doctors were lined up at the hospital

> waiting to see my swollen red ears and inflamed trachea. At that time

there

> were only 8 articles in all the medical literature in this country. A

doctor

> from Boston University Medical Center was assigned to do followup studies

on

> me and I made personal appearances at medical school. Photos of my famous

> ears are now also shown in lectures at Harvard Medical School.

>

> They had me on high doses of prednisone which at the time they thought

was

> safe. So I ended up with osteoporosis and 19 fractured vertebrae - now

up

> to 27 fractures-- ribs, feet. But they saved my life.

>

> I had to leave my work as a children's librarian because of the fatigue.

> Every spring [is it the first burst of hot humid weather?] the flare up

> happens and I'm miserable all summer. But when I have to stay close to

home I

> work on writing, book reviewing and am the family historian.

>

> I now go to a Harvard teaching hospital that is five minutes away. My

> rheumatologist is in the same department as Dr. Trentham [whom I have

never

> met]. I depend on him and my very capable ENT who has other

polychondritis

> patients.

> I don't think I've had a day in all these years without having that

burning

> ear feeling.

>

> How many members are in the group?? And please put me in DIGEST MODE!

> The number of e-mails is a bit overwhelming! thanks!

> G

>

>

> 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

>

[Guest guest]

Welcome ,

Sorry you have RP but I'm happy you found us. My name is Sandy, I'm 52 and

married. I have 5 kids and 5 grandkids. I live in Northern Ohio.

I was DX. in May of 99 but the docs think I've had RP for at least 10 years

prior to DX.

I am glad to see you have good Doctors.

Looking forward to getting to know you better.

Hugs,

Sandy

> Hi, everyone-- I'm the new member from the Boston area. I may be the

> longest survivor of polychondritis since I have had it for 33 years. It

took

> three months and about three dozen doctors [lucky that I was in a good

> medical center] before they told me that I was the 76th case reported in

this

> country. Oh, the attention I got-- doctors were lined up at the hospital

> waiting to see my swollen red ears and inflamed trachea. At that time

there

> were only 8 articles in all the medical literature in this country. A

doctor

> from Boston University Medical Center was assigned to do followup studies

on

> me and I made personal appearances at medical school. Photos of my famous

> ears are now also shown in lectures at Harvard Medical School.

>

> They had me on high doses of prednisone which at the time they thought

was

> safe. So I ended up with osteoporosis and 19 fractured vertebrae - now

up

> to 27 fractures-- ribs, feet. But they saved my life.

>

> I had to leave my work as a children's librarian because of the fatigue.

> Every spring [is it the first burst of hot humid weather?] the flare up

> happens and I'm miserable all summer. But when I have to stay close to

home I

> work on writing, book reviewing and am the family historian.

>

> I now go to a Harvard teaching hospital that is five minutes away. My

> rheumatologist is in the same department as Dr. Trentham [whom I have

never

> met]. I depend on him and my very capable ENT who has other

polychondritis

> patients.

> I don't think I've had a day in all these years without having that

burning

> ear feeling.

>

> How many members are in the group?? And please put me in DIGEST MODE!

> The number of e-mails is a bit overwhelming! thanks!

> G

>

>

> 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

>

[Guest guest]

Wow ,

It kinda sounds like you might have RP along with the

other. RP is a serious disease but at least if you

know what you got and they get you dx. they can get

you on the appropriate meds. and control it. Take

care. There is another member of this group who lives

in Florida and she also is a single mother. Keep

posting and asking questions that is how we get to

know you. No question here is dumb or treated

lightly. You will get your answers.

Lot of Love

Glenda

__________________________________________________

[Guest guest]

I just wanted to say Hi and that I am a new member of the group. I

had my surgery on May 5th of 2003 I was 252 pounds and wearing a

26/28 and they were tight. I now am at 130 and wearing 8/10s. I do

have loose skin and was wondering if anyone really has been able to

tighten it up with exercise, I do walk over a mile a day so I am not

sitting around.

Thanks

Kim