Re: New Member

[Guest guest]

Hi and Welcome to the group:

Has your doctor given you any medication to help with the wired feeling

while on Pred?

I didn't sleep for 4 night while on 80mg of Pred and doc put me on

Ativan 0.5% 2-3 times a day and that did help.

How much prednisone are you taking? Sounds like you may need more.

From my experience and others SED rate does not have to be elevated in

an active flair.

Yes there has been significant information shared since I joined a little

over a year ago

and many in this group are invaluable with their knowledge and information.

The group has really grown so we have alot of valuable resources and people

with experience when our docs don't know what to do.

Welcome to the group and don't be afraid to ask questions.

Take care,

krussell42@... wrote:

Hi! I am a 58 year old female, and have

had RP for about 14 years,

with no disfiguring side effects....so far. Over the years,

I have

many episodes, and have been treated with Prednisone and

Methotrexzate. Last week, I once again came out of remission,

and

once again the target area is my right ear. Ouch..it hurts! My

sed

rate last Thursday was normal, and my physician did not suspect

that

another episode was coming on.

This past Monday, my ear started to turn red and I was put on the

Medrol dose pack and Keflex (500mg. 3x a day). She also gave me

a RX

for Prednisone, which I was suppose to start after I finished the

dose pack. Since then, my ear has gotten puffy and redder. Things

don't seem to be improving. I'm going to call her back this morning

with an update. I can honestly say that I know what brings on an

RP

episode...STRESS! For the past two years, I have been doing great

until a week ago, when I had to deal with rushing my mother to

the

ER, and trying to visit her while she was in the hospital, and

still

maintaining my job. While I sit here at 4 A.M., "wired" on steroids,

I dread the thought of having to increase the dosage. I'll be a

walking zombie!!! When I am in remission, I really don't think

or

dwell on this disease. Needless to say, for the past two

years, I

have loss touch with news about any new medications that may help.

Is there any?

hi and welcome. maybe we can come up with answers that our doctors

can't

[Guest guest]

Welcome to our group!!!

I can relate to the fact that you can be in a major flare and your sed rate

be normal. During one of my worst flares my sed rate was normal, so this

isn't a good determining factor for flares in RP.

Have you visited our web site yet? We have lots of great info listed there,

including some of the drugs we are currently taking. The address is:

http://rpolychondritis.tripod.com/index.html

Again, welcome to our group!!

>>>>>>>>>>>>>>>>>>>>>>>>>>

Hi! I am a 58 year old female, and have had RP for about 14 years,

with no disfiguring side effects....so far. Over the years, I have

many episodes, and have been treated with Prednisone and

Methotrexzate. Last week, I once again came out of remission, and

once again the target area is my right ear. Ouch..it hurts! My sed

rate last Thursday was normal, and my physician did not suspect that

another episode was coming on.

This past Monday, my ear started to turn red and I was put on the

Medrol dose pack and Keflex (500mg. 3x a day). She also gave me a RX

for Prednisone, which I was suppose to start after I finished the

dose pack. Since then, my ear has gotten puffy and redder. Things

don't seem to be improving. I'm going to call her back this morning

with an update. I can honestly say that I know what brings on an RP

episode...STRESS! For the past two years, I have been doing great

until a week ago, when I had to deal with rushing my mother to the

ER, and trying to visit her while she was in the hospital, and still

maintaining my job. While I sit here at 4 A.M., " wired " on steroids,

I dread the thought of having to increase the dosage. I'll be a

walking zombie!!! When I am in remission, I really don't think or

dwell on this disease. Needless to say, for the past two years, I

have loss touch with news about any new medications that may help.

Is there any?

[Guest guest]

Hi New Member,

Welcome ! My husband has been dx w/ rp since April 99 but had symptoms

since '92. You will find great info on this list. I love your attitude

about RP. My husband does not dwell on the disease at all but recently the

flares have gotten really bad. His Dr. only has him on pred. He is 38.

B.

At 09:13 AM 5/11/2000 -0000, you wrote:

>Hi! I am a 58 year old female, and have had RP for about 14 years,

>with no disfiguring side effects....so far. Over the years, I have

>many episodes, and have been treated with Prednisone and

>Methotrexzate. Last week, I once again came out of remission, and

>once again the target area is my right ear. Ouch..it hurts! My sed

>rate last Thursday was normal, and my physician did not suspect that

>another episode was coming on.

>This past Monday, my ear started to turn red and I was put on the

>Medrol dose pack and Keflex (500mg. 3x a day). She also gave me a RX

>for Prednisone, which I was suppose to start after I finished the

>dose pack. Since then, my ear has gotten puffy and redder. Things

>don't seem to be improving. I'm going to call her back this morning

>with an update. I can honestly say that I know what brings on an RP

>episode...STRESS! For the past two years, I have been doing great

>until a week ago, when I had to deal with rushing my mother to the

>ER, and trying to visit her while she was in the hospital, and still

>maintaining my job. While I sit here at 4 A.M., " wired " on steroids,

>I dread the thought of having to increase the dosage. I'll be a

>walking zombie!!! When I am in remission, I really don't think or

>dwell on this disease. Needless to say, for the past two years, I

>have loss touch with news about any new medications that may help.

>Is there any?

>

>

>------------------------------------------------------------------------

>Win $500 at freewarranty.com!

>Click Here:

>http://click./1/4031/1/_/32049/_/958036418/

>------------------------------------------------------------------------

>

>hi and welcome. maybe we can come up with answers that our doctors can't

>

Burdick

Circulation/ILL Manager

Yale University Divinity Library email: susan.burdick@...

409 Prospect Street ph:

New Haven, CT 06511 fax:

USA

[Guest guest]

Welcome to the group. I have had flares and not elevated sed rate and have

felt fine but my sed rate comes up really high. My drs treat both of these

with pred. I am currently on meth and pred. This is a wonderful, supportive

group and they all have a vast source of knowledge. I didn't get your first

name. I'm C (there are 2 's) and I live in Calif. I'm 48

years old. Before I was dx I was put on Medrol and antibiotics, it didn't

work for me until I was on a high dose of pred. Good luck and hope you get

to feeling better. Welcome again.

C

[Guest guest]

Hi and welcome to the group. I hope you find the love and support here that I have. If you ever need answers to questions or just some one to talk to we are here. What is your name?

Love, Tammy F.

New MemberHi! I am a 58 year old female, and have had RP for about 14 years, with no disfiguring side effects....so far. Over the years, I have many episodes, and have been treated with Prednisone and Methotrexzate. Last week, I once again came out of remission, and once again the target area is my right ear. Ouch..it hurts! My sed rate last Thursday was normal, and my physician did not suspect that another episode was coming on.This past Monday, my ear started to turn red and I was put on the Medrol dose pack and Keflex (500mg. 3x a day). She also gave me a RX for Prednisone, which I was suppose to start after I finished the dose pack. Since then, my ear has gotten puffy and redder. Things don't seem to be improving. I'm going to call her back this morning with an update. I can honestly say that I know what brings on an RP episode...STRESS! For the past two years, I have been doing great until a week ago, when I had to deal with rushing my mother to the ER, and trying to visit her while she was in the hospital, and still maintaining my job. While I sit here at 4 A.M., " wired " on steroids, I dread the thought of having to increase the dosage. I'll be a walking zombie!!! When I am in remission, I really don't think or dwell on this disease. Needless to say, for the past two years, I have loss touch with news about any new medications that may help.Is there any?

hi and welcome. maybe we can come up with answers that our doctors can't

[Guest guest]

Hello, I'm glad to hear that you think STRESS brings

on your RP. I also can almost bet when I get stressed

that mine will flare up within days. I teach

kindergarten and oh well. I've been suffering with

red swollen ears for going on seven years. Do you get

blisters? I have horrible blisters that take forever

to heal. This is a great site and the people are so

nice. I have throughly enjoyed the humor that goes

along with some of the e-mail. I have really laughed

alot in the last couple of days. Hope you feel better

soon.

Cecelia

--- Enderle wrote:

> Hi and Welcome to the group:

>

> Has your doctor given you any medication to help

> with the wired feeling

> while on Pred?

> I didn't sleep for 4 night while on 80mg of Pred and

> doc put me on

> Ativan 0.5% 2-3 times a day and that did help.

>

> How much prednisone are you taking? Sounds like you

> may need more.

> From my experience and others SED rate does not have

> to be elevated in

> an active flair.

>

> Yes there has been significant information shared

> since I joined a

> little over a year ago

> and many in this group are invaluable with their

> knowledge and

> information. The group has really grown so we have

> alot of valuable

> resources and people with experience when our docs

> don't know what to

> do.

>

> Welcome to the group and don't be afraid to ask

> questions.

>

> Take care,

>

>

>

> krussell42@... wrote:

>

> > Hi! I am a 58 year old female, and have had RP

> for about 14 years,

> > with no disfiguring side effects....so far. Over

> the years, I have

> > many episodes, and have been treated with

> Prednisone and

> > Methotrexzate. Last week, I once again came out

> of remission, and

> > once again the target area is my right ear.

> Ouch..it hurts! My sed

> > rate last Thursday was normal, and my physician

> did not suspect that

> > another episode was coming on.

> > This past Monday, my ear started to turn red and I

> was put on the

> > Medrol dose pack and Keflex (500mg. 3x a day). She

> also gave me a RX

> > for Prednisone, which I was suppose to start after

> I finished the

> > dose pack. Since then, my ear has gotten puffy and

> redder. Things

> > don't seem to be improving. I'm going to call her

> back this morning

> > with an update. I can honestly say that I know

> what brings on an RP

> > episode...STRESS! For the past two years, I have

> been doing great

> > until a week ago, when I had to deal with rushing

> my mother to the

> > ER, and trying to visit her while she was in the

> hospital, and still

> > maintaining my job. While I sit here at 4 A.M.,

> " wired " on steroids,

> > I dread the thought of having to increase the

> dosage. I'll be a

> > walking zombie!!! When I am in remission, I really

> don't think or

> > dwell on this disease. Needless to say, for the

> past two years, I

> > have loss touch with news about any new

> medications that may help.

> > Is there any?

> >

> >

>

-----------------------------------------------------------------------

> >

> >

>

-----------------------------------------------------------------------

> > hi and welcome. maybe we can come up with answers

> that our doctors

> > can't

>

>

>

__________________________________________________

[Guest guest]

That's because they think were to stupid to understand whats going on and

over half the time it's the reverse.I have one rhuemy he keeps one foot in

the door during office visits of 2 minutes or less guess if he got fired.

Colna

Re: New Member

> Hi, Welcome to the group. Like you, my RP is centralized in my ears

(left). I haven't been given the remission word yet, but am hopeful. My dr

prescribes the same drugs meth and prednisone. Good luck with your flare.

Can I ask how long was your longest remission period and how many times have

you been there? This is a great group to receive all the information you

can't get from the doctors and the support is above and beyond. You

couldn't ask for a better bunch of cyber buddies to get you through

day-to-day " stuff " Just me, Kathleen

>

> ------------------------------------------------------------------------

> Remember four years of good friends, bad clothes, explosive chemistry

> experiments.

> http://click./1/4051/1/_/32049/_/958153153/

> ------------------------------------------------------------------------

>

> hi and welcome. maybe we can come up with answers that our doctors can't

>

[Guest guest]

Hi, Welcome to the group. Like you, my RP is centralized in my ears (left). I

haven't been given the remission word yet, but am hopeful. My dr prescribes the

same drugs meth and prednisone. Good luck with your flare. Can I ask how long

was your longest remission period and how many times have you been there? This

is a great group to receive all the information you can't get from the doctors

and the support is above and beyond. You couldn't ask for a better bunch of

cyber buddies to get you through day-to-day " stuff " Just me, Kathleen

[Guest guest]

, It's so good to have you back with us again. sorry to hear about the

flu bug. Please take care and rest. I'm so happy your mom is doing okay.

Our prayers were answered. Have a nice visit with your in laws and keep that

stress down. If you mother in law runs out of stuff to clean at your house,

PLEASE send her to mine.lol

Love ya lots

C

[Guest guest]

Dear group,

hello all. tought i'd ost a note before i try to read ye mail. ,

Plese4 put me o digest again. y in-laws are coming tomorrow for tw

weeks. next weekend we will traavel to springfield MO to see my

youngest graduae from college. I am so gratefuo to be able to attend.

two years go my younger two graduatedfrom college and i was in the

hosital at he te so i missd them both.

get along very well with my inlaws. His mother and I are very close.

however she likes to perseverate on topics such s problems======so i

have decided that if she starts taling abut soething that might upset me

i am just goiong to politely tell her hat i'd prefer not to talkabout

it. two weeks isa ong time. and yes it isgod stres, but sress is

stress. I am still trying to recover from my trip t GA. I have been

sick this week pickedup a flu bug or smething vomiting etc. not

sleeping well so he narcolepsy is kiccking in during the day as well as

at night.

My moter trip went well. they wet to do a angioplasty, anyway they

fondthatu nbeknowstd to us she had had a heart attack in the past tt

left a 100% blockage on the left. but get this--her bod created a

naatural bypass by growing new veins, artieries t compensae. she has a

50% blockage on the right and they will continue to watch it, and if it

gets wrse tey will do a by pass.

my husbnd has been cleaning house ,yard ec getting ready. My moter in

law is a meticulous housekeeper, when my children were young, and I was

so also hadthe time o kep a clean house. and always used to get

nervous when she wold come to visit. not anymore. as far as i am

concerned, i will had her a rag as whe walks in the door if it makes her

day.

two years ago when i was in he hospial, my nlaws came to visit. se

cleaned house fom topto bottom drapes andeverything nd my husband and

father in law painted the inside of the house, so i cam hoe to a

beautifuly clead freshly painted house. it wasnice.

when i do want to clean i sometimes i get frustrated because my back

lets me do so little, and then try to remember be rateful hat i can do

anything at all.

i will try to keep upw ith the e mail, utmyweb tv is n he den so that is

the room e al congregate in. pleasekeep me in your prayers.

welcome o the newcomer.

if anyone would like to get in touch with me pleas feel fre to call in

the next ople ofweeks.

love

denise

[Guest guest]

Welcome ! You have come to the right place if you are looking for support

and encouragement on your weight loss journey and you will make some dear

friends along the way. This is the best group on the net!!

A short bio on me: I am a 39 year old working mom of a beautiful 4 year old

daughter (). Hubby (Kevan), , and I live in a small town in western NC

called Brevard. Currently, I am an accounting specialist for Agfa Corporation

but will return to school after " downsizing " to pursue a degree in middle school

education (science). I, like you, have been off and on WW for a while. Since

re-committing myself to being totally OP on 4/28/02, I have lost 4.5 pounds. I

would like to lose a total of 77 pounds to a goal weight of 140.

Post often as I look forward to getting to know you!

|--------+----------------------->

| | " meganbaeza " |

| | <meganbaeza@y|

| | ahoo.com> |

| | |

| | 05/08/2002 |

| | 01:20 PM |

| | Please |

| | respond to |

| | wwliterside |

| | |

|--------+----------------------->

>-----------------------------------------------------------|

| |

| To: wwliterside |

| cc: (bcc: -C /BRE/AGFA/US/BAYER) |

| Subject: new member |

>-----------------------------------------------------------|

hi group..

i just joined ya'll on monday (texas girl, here) and have to say you

guys are super. my name is megan and i have been on and off

ww for a long long time...currently off b/c of financial reasons, but

i always have kept my habits pretty stable.

i sorta " lurked " about the messages and saw somebody's

" before payday supper " (i forgot who, sorry!). talk about great. i

made it last night and am eating it for lunch today at work.

just wanted to say hello!

~There are no strangers here... Only friends that haven't met yet~

[Guest guest]

Hello and Welcome !! I'm so glad you joined us!! The recipe came from me... we just love it too!! Be sure to check out the bookmarks and files for some very helpful links, recipes, and downloads!!

Post often so we can get to know you!!

~~mary@...

hi group..i just joined ya'll on monday (texas girl, here) and have to say you guys are super. my name is megan and i have been on and off ww for a long long time...currently off b/c of financial reasons, but i always have kept my habits pretty stable.i sorta "lurked" about the messages and saw somebody's "before payday supper" (i forgot who, sorry!). talk about great. i made it last night and am eating it for lunch today at work.just wanted to say hello!

[Guest guest]

Hi Meagan and welcome to the group! The payday supper was posted by Zotz. She owns the board and supplies us with a lot of wonderful recipies. THANKS MARY!!!

Be sure to check out our files to find lots of helpful tools (weight tracker, journals, recipies, etc). Post often and don't be afraid to ask questions.

Maureen

new member

hi group..i just joined ya'll on monday (texas girl, here) and have to say you guys are super. my name is megan and i have been on and off ww for a long long time...currently off b/c of financial reasons, but i always have kept my habits pretty stable.i sorta "lurked" about the messages and saw somebody's "before payday supper" (i forgot who, sorry!). talk about great. i made it last night and am eating it for lunch today at work.just wanted to say hello!~There are no strangers here... Only friends that haven't met yet~

[Guest guest]

In a message dated 10/21/2003 8:56:45 AM Central Standard Time,

billiefwaits@... writes:

this is my first time to ever get on this site, never posted message

anywhere before so you may have to talk me thru this.'

billie waits

surgery 10-16

weight 277

dr McCarty

Well welcome Billie. Glad to have you aboard. You will find the is without a

doubt the best support group you will ever be on. Very good people, very

informative, and even more compassionate.

Wolfie

Leeds, Alabama

Lap RNY

August 27,2003

Dr. Lee A. Schmitt, M.D.

Medical Center East

Beginning Weight: 336

" Keep Em Laughing! "

[Guest guest]

Thank you so much. I found all of you because I thought a little support and talking to people who understood would be good for me. I have Primary 's, Celiac, most likely Sjogren's, and now we are looking into ankylosing spondylitis and possibly (and hopefully not) scleroderma. Autoimmune stuff is awful and no one understands but those who have it so here I am.

I have two kids at home - one of them is autistic, and I have many hobbies, primarily kitting and reading. I am widowed as of 21 months ago and miss my DH more than words can say.

I am sure there is more but that gets you something so I am not just a lurker. Looking forward to meeting with everyone.

BlueDenim*********** REPLY SEPARATOR ***********

Welcome to bluedenimlady. Tell us a little about yourself. I'm ; I have Crohn's Disease & I'm on Remicade & a bunch of other meds.

____________________________________________________ IncrediMail - Email has finally evolved - Click Here Please visit our website at:http://ACES_Autoimmune.tripod.com

[Guest guest]

Maybe I can come live at your sanctuary, too? Sounds perfect to me.

> Welcome to our humble group. Nothing but religion and politics are

off limit. No question is to stupid or to off the wall for us. lol I

don't know what I would have done if I hadn't found this group. We're

great for a shoulder to lean on or cry on, and also good for a great

laugh. Everyone needs a good laugh every once in awhile. I'm , I

have OA, HPB, Fibro, some weird neuro problems that we're working on

right now among other things. I've been married to for 16

years, have two kids, is 24, a is 22 married and has the

sweetest lil grandbaby named Zaiden. We live in Oklahoma, very near a

beautiful lake and are out in the woods. I love it. I just got in

from feeding all our critters. We have 7 dogs, 5 cats, a turtle, we

also have numerous bird feeders for the birds, squirrels, chipmunks,

and deer. It doesn't take to long to make the route on the 4 wheeler

pulling a trailer loaded with the feed. lol I don't feel like doing

it every day so it makes it special when I feel like doing it.

>

>

>

>

> Please visit our website at:

> http://ACES_Autoimmune.tripod.com

>

>

>

[Guest guest]

Hi . . . mskahlee,

Would that be Ms. Kahlee? To me, it just feels friendlier if I can

address folks by name.

I can't help you with info about Harbor City Kaiser (is that in Souther

California?) - but I do want to welcome you to the group. The folks

here provide so much support and information that I'd be lost without

it. I hope that it proves to be as valuable to you.

I look forward to getting to know you and to hearing how your journey is

progressing. Please, feel free to ask anything that comes to mind. We

don't always have the answers - but we try.

All the best,

Kay

open RNY 12/1/03

mskahlee wrote:

> I'm currently in the last stages of test for the weight loss surgery.

> I'm having my surgery done in the Harbor City Kaiser Hospital. Has

> anyone in the group ever had surgery at this Kaiser facility? Which

> surgeon did the procedure? If, so what should I expect. You can email

> me privately if you like mskahlee@....

>

> Thanks