Hello

[Guest guest]

Was it tough for Holly to learn to walk, etc., as she was probably in pain?

[Guest guest]

Holly could not even sit up on her own till her first birthday, as she

started to feel better around march she did everything, so she wasn't very

late walking actually. It was a very difficult time for us, it is so hard to

see someone that little in such pain. One of the most difficult times, that

stands out most in my mind, was the night i decided to let her sleep

downstairs in her own room, and when i went to get her in the morning, she

was crying as she was laying on her arm and couldn't move at all to get it

out from under her, i felt so bad, that she never slept alone in her room

again for a very long time. I don't know as it was the best choice i ever

made, as now she is almost 6 and still sleeps with us most nights, even if

she goes to bed in her own bed, it isn't long before she is in with us. but

for so long if she wasn't in bed with us, then we weren't getting any sleep,

as you all well know a child with a temp of around 106 is not something you

just let go. I wasn't comfortable unless she was in reach at all times. Talk

to you later, n

[Guest guest]

I was reading your post and I can only say I know how you feel( about the

bed thing ) my daughter is 3 and she sleeps in my room in a toddler bed my

husband wont let me make her go to her on room he wants her where he can

reach her (LOL)

>From: Ajaomom@...

>Reply- onelist

> onelist

>Subject: Re: [ ] hello

>Date: Fri, 9 Jul 1999 01:46:11 EDT

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>From: Ajaomom@...

>

>Holly could not even sit up on her own till her first birthday, as she

>started to feel better around march she did everything, so she wasn't very

>late walking actually. It was a very difficult time for us, it is so hard

>to

>see someone that little in such pain. One of the most difficult times, that

>stands out most in my mind, was the night i decided to let her sleep

>downstairs in her own room, and when i went to get her in the morning, she

>was crying as she was laying on her arm and couldn't move at all to get it

>out from under her, i felt so bad, that she never slept alone in her room

>again for a very long time. I don't know as it was the best choice i ever

>made, as now she is almost 6 and still sleeps with us most nights, even if

>she goes to bed in her own bed, it isn't long before she is in with us. but

>for so long if she wasn't in bed with us, then we weren't getting any

>sleep,

>as you all well know a child with a temp of around 106 is not something you

>just let go. I wasn't comfortable unless she was in reach at all times.

>Talk

>to you later, n

>

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

[Guest guest]

your hubby and i would get along fine, lol

[Guest guest]

n,

When is flaring we too like to have her right there to monitor during

the night. My husband just moves out and she moves in. I can only be

thankful that she was not younger when this came on for she wouldn't have a

clue as to what is going on. How is your daughter now with pain as she has

grown up with it? Is she chubby from the steroids? And small for her age?

How is her temperament, is it different form other kids her age?

[Guest guest]

Okay lets see, she is not chubby from the steroids nor very small for her

age, fortunately she has not been on steroids in huge amounts as some of the

other children on the list. Holly has a very cyclical disease she does well

for about 6 months and then flares for about 6 months, September is never a

good time for her. When she flares, she doesn't grow much. Holly has always

dealt with the pain fairly well, she has a huge understanding for her

disease. She is very mature for her age, my grandmother likes to say she has

an old soul. her temperament is very good, she is very grown up in all she

does. n

[Guest guest]

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<html>

Hi,

<p>n, it's strange that you said that your daughter is an 'old soul'.

People have said that about my son Josh, too. Like he's been here before

and knows how to cope with things well. More mature for his years and a

wonderful temperament ... most times :-)

<p>Josh is very short for his age. And when he's on high dose prednisone

(over 15mgs) he does get very chubby. Fortunately, he slims down as the

dose gets lower.

<p>~Georgina

<p>Ajaomom@... wrote:

<blockquote TYPE=CITE>From: Ajaomom@...

<p>Okay lets see, she is not chubby from the steroids nor very small for

her

<br>age, fortunately she has not been on steroids in huge amounts as some

of the

<br>other children on the list. Holly has a very cyclical disease she does

well

<br>for about 6 months and then flares for about 6 months, September is

never a

<br>good time for her. When she flares, she doesn't grow much. Holly has

always

<br>dealt with the pain fairly well, she has a huge understanding for her

<br>disease. She is very mature for her age, my grandmother likes to say

she has

<br>an old soul. her temperament is very good, she is very grown up in

all she

<br>does. n</blockquote>

</html>

[Guest guest]

<!doctype html public " -//w3c//dtd html 4.0 transitional//en " >

<html>

Hi ,

<p>Wow, I can't believe they're already thinking of trying Enbrel for your

daughter. I'm so glad it's available as an option. Please keep us all updated

on how it goes, if they do decide to try it. From some of the things I've

read, I think they've had even better results when they use Enbrel right

along with methotrexate. You're right, they do usually want to stop using

it when there's an infection. I guess could try taking NSAID's if

she was really feeling sore during an off-period. Yes, the cost is definitely

a factor, too. That's a very expensive medicine. I hope your insurance

will pay for a big portion of it, at least.

<p>So, is down to only 9 mgs of prednisone? That's terrific! I'm

sorry to hear that she's having some break through pains but it shouldn't

last too long. Maybe a week or two? What's the highest amount of pred she's

been on? Thanks for your encouragement. I really hope that maybe this time

we will be more successful in lowering Josh's pred, too. Only time will

tell. I've definitely learned not to rush it all. Take each taper very

slowly and hopefully, there will be better results. We'll see :-)

<p>The doctor's always trying to reassure me, saying that long term use

is subjective. Some people are on it daily for 20 years! It was (is?) the

one drug that has been most effective in controlling Josh's inflammation,

over the long haul. But it's definitely a catch-22. I know what you mean

about wanting your daughter off it ASAP!

<p>Take care,

<br>Georgina

<p>SHANNON MARTINO wrote:

<blockquote TYPE=CITE>From: " SHANNON MARTINO " & lt;shancna@...>

<p>Georgina if my daughter is not handling the decrease of the pedie pred

thius

<br>time she will be coming of th metho and start on enbrle I am leary

only

<br>because if she gets any thing we wii have to stope until she is better

,and

<br>it costs about 1,ooo a month and my insurance does not cover it all

<br>is now down to 9 mg but she is starting to have some brake threw pain

so we

<br>have started the Motrin again ,so I hope to cotinue I hope that you

have

<br>better luck with your son!!! this time this is only our thierd try

to get

<br>here down you have had more tries then that by the sounds of it I am

very

<br>concerned about 's long term effects of pediepred I want her

off

<br>a.s.a.p!! well good luck & nbsp; & nbsp; & nbsp; & amp; </blockquote>

</html>

[Guest guest]

<!doctype html public " -//w3c//dtd html 4.0 transitional//en " >

<html>

Hi n,

<p>That story was so sad, about when Holly was sleeping on her arm :-( & nbsp;

I guess we've all had moments like that, when our children are suffering.

It's so hard to see them in pain and not know how to help immediately.

I bought a little plastic bell that was easy to ring and very loud. If

Josh needed me in the night time or anytime, I could hear that bell whereever

I was and would go running. Then, his sister got a little jealous and wanted

a bell of her own. So, I caved in and got her one and they both had me

running around for a while. Fortunately, his flare didn't last too long

and I was able to put both bells away until the next time we needed them.

They sort of took advantage a bit but were reassured to know that I'd be

there as soon as they needed.

<p>One night a few months ago, Josh woke up in the night not being able

to breathe too good. He was crying and hot and had a lot of pain in his

chest. We stayed up for most of the night together. Times like that, he

knows he can always come into my room. My daughter, if she wakes up to

use the bathroom, often wanders into my room instead of back into her own.

Not so much lately, though. I figure it's part of growing up and will happen

less frequently when they're college age :-)

<p>Take care,

<br>Georgina

<p>Ajaomom@... wrote:

<blockquote TYPE=CITE>From: Ajaomom@...

<p>Holly could not even sit up on her own till her first birthday, as she

<br>started to feel better around march she did everything, so she wasn't

very

<br>late walking actually. It was a very difficult time for us, it is so

hard to

<br>see someone that little in such pain. One of the most difficult times,

that

<br>stands out most in my mind, was the night i decided to let her sleep

<br>downstairs in her own room, and when i went to get her in the morning,

she

<br>was crying as she was laying on her arm and couldn't move at all to

get it

<br>out from under her, i felt so bad, that she never slept alone in her

room

<br>again for a very long time. I don't know as it was the best choice

i ever

<br>made, as now she is almost 6 and still sleeps with us most nights,

even if

<br>she goes to bed in her own bed, it isn't long before she is in with

us. but

<br>for so long if she wasn't in bed with us, then we weren't getting any

sleep,

<br>as you all well know a child with a temp of around 106 is not something

you

<br>just let go. I wasn't comfortable unless she was in reach at all times.

Talk

<br>to you later, n</blockquote>

</html>

[Guest guest]

Not till college age!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

ROFL

[Guest guest]

That's how it is with her exactly Georgina, wise beyond her years

[Guest guest]

Georgina,

Most of the messages that you send are empty? Is it something I need to

do?

The subjects are interesting, but no body! Hope to hear from you soon.

-Coady

----------

> From: Georgina <gmckin@...>

> onelist

> Subject: Re: [ ] hello

> Date: Saturday, July 10, 1999 9:18 PM

>

[Guest guest]

<!doctype html public " -//w3c//dtd html 4.0 transitional//en " >

<html>

Hi ,

<p>uh oh. Am I still invisible? I don't know what the problem might be.

When I get a copy of the messages I send, they look fine to me. If anybody

has any clues, HELP! & nbsp; :-)

<p>Thanks,

<br>Georgina

<p> Coady wrote:

<blockquote TYPE=CITE>From: " Coady " & lt;kacoady@...>

<p>Georgina,

<p>Most of the messages that you send are empty? & nbsp; Is it something

I need to

<br>do?

<br>The subjects are interesting, but no body! & nbsp; Hope to hear from

you soon.

<p> -Coady

<p>----------

<br>> From: Georgina & lt;gmckin@...>

<br>> onelist

<br>> Subject: Re: [ ] hello

<br>> Date: Saturday, July 10, 1999 9:18 PM</blockquote>

</html>

[Guest guest]

Lee Ann..welcome to the group. Yes, it is wonderful to have contact with

people who can actually know what you are going through. Glad you found us

too. Annette

[Guest guest]

Lee Ann..you sound like a very busy lady )))) Yes, the MTX is powerful

and will probably help you a great deal. You will, however, have to continue

the blood testing as long as you are on MTX, which is frequently many years.

I cannot answer your question about " mid-cycle " ....I am 53 and quit " cycling "

years ago. ))

I do notice that my face is often swollen after the MTX and I feel bad...just

like I had been poisoned...which of course I have. I will soon switch to the

shots to possibly help with the nausea.

You are fortunate to be at a stage where topical ointments help...they do not

help me at all. So far MTX has been the best.

Good luck and glad you have joined us. Annette

[Guest guest]

Lee Ann,All I can say is God Bless You. I am sure He will. We have 2

adopted children that were babies and we now have grandchildren and so

blessed. I am 66 and only had PA for 3 1/2 yrs. When I was put on mtx.,

pred, plaquinil, folic acid about 3yrs. ago I was like 'brand new " . Hope you

have a good RD that follows you closely. I have an excellent one and am so

thankful. I put myself in her hands. I am an RN, but let her call the shots

on this. She welcomes my thoughts and opinions. When I went for a 2nd.

opinion, she said " go ahead as I have no God complex " . You will be in my

prayers when I go to bed at nite. Do keep us posted. I feel so lucky when I

think of so many suffering from P and PA. The members of this board are just

wonderful and are so informative. Some things work for one person and not

for another. At least we are kept informed what's going on. God Bless,

Betty in Va

[Guest guest]

Hi Lee Ann --

I'm in my late thirties and was diagnosed a year and

a half ago. I imagine I had it some five or six years

before diagnosis, and saw lots of doctors who could

not get a grip on the problem -- so you are not

alone in this late diagnosis bit! My hands and feet

hurt quite a bit, and I have ankylosing spondylitis

in my SI joints.

You don't say what meds your RD (Rheumatoid Doctor)

had you on, but if you are on folic acid I'd imagine

s/he has you on methotrexate. I find MTX works

better than just about anything I have tried.

I used to take it orally @ 25 mg/week, but my doctor

recently switched me to the injectible form. You

might find the MTX upsets your stomach, and injections

help to minimize the upset. Indocin, a drug which is

good or pain, can also upset your stomach, and the way

out of that trouble is to switch to Celebrex.

There are lots of resources you should consider

consulting. One is the web page that accompanies

this list, at http://www.wpunj.edu/pa/ . While you

are

there you can visit the " web resources " page. Among

the many good webpages is the one for the Arhtitis

Foundation of America, at http://www.arthritis.org .

At that site you can become a member, which entitles

you to their magazine, " Arthritis Today. " The July/

August issue, on stands now, has a VERY good guide

to arthritis drugs.

And there are chats in where you can meet arthritis

people from all over the world and talk about

doctors, drugs, families, experiences, etc. You can

try the one at Dr. Koop, http://www.drkoop.com which

is open 24x7 but does not have a specific arthritis

room. They do feature a Psoriatic Arhritis chat on

Wednesday nights at 8-9p EDT. About.com,

http://www.about.com , has a room open specifically

for arthritis 24x7. All sorts of arthritis people

come to that room, often starting around 8p EDT just

about every night. They host a PA chat on Thursday at

8p, but is only loosely tied to PA. I was not a

" chat " person before I found these rooms, and they are

still the only places I " chat. " I have always thought

chat a waste of time, and think it largely is, but

directed, mature chats like the ones on About.com and

Drkoop.com are very useful, especially is you are new

to arthritis.

So, Lee Ann, if you have waded all the way through

this, welcome to the PA list! There are lots of

good people here, and with it and some of the other

resources I mentioned here I hope your detour to

arthritis-land will be that much more comfortable.

===

, NJ Highlands

raharris@...

_____________________________________________________________

>

[Guest guest]

Thanks Annette and ,

I am just starting my treatment. I have to get a baseline blood

test done on Monday and then I will start the medication.

Methotrexate is the medication I will be starting. I have to

have blood tests every month for a while. I am not happy about

this diagnosis but at least I know what is going on now. I have

been to several Doctors and none of them really had any answers

because my skin condition is not extremely bad and I was not that

old. So I gave up complaining for a few years. The Doctor I see

now is very good. His wife just recently died after a 10 year

battle with cancer. He is much more sympathetic than any other

doctor I have seen. My mother has Sjorgens syndrome and my

doctor is very interested in treating me early and more

aggressively than he would normally.

My husband and I have 5 children. Our oldest will be 16 in

September, our second one was just 14 - these are our birth

daughters. We also have 3 little ones by adoption. All came as

newborns - our oldest son is 2 years and 9 months, -- our

daughter is 2 years and 6 months and has Downs, -- our second son

is 11 months old, has Downs and was born drug addicted. Needless

to say I am VERY busy and having quite a time keeping up. We

bought a home just a year ago that has 4 levels. The laundry is

on the lowest floor and the bedrooms on the top. If I had known

I would be dealing with this health problem we would have looked

into a different style of home. I would like to adopt again but

I think since my health has taken this turn I have all I can

handle.

I have lower back pain, neck pain and hip pain. I go through a

lot of Ben Gay! My kids hate the way I smell but at least I am

not in pain all of the time! I was beginning to think my weight

was causing my pain since none of the DR's had an answer I have

never been any more than 25 pounds over my ideal weight. One

thing I have found is following a Lo carb diet really helps with

the pain. I don't have as much swelling in my hands on Lo carb

either. The problem is it is very hard to eat like that all of

the time.

Do any of the rest of you have swelling in your face in the

morning or a lot of pain around mid cycle?

Sorry for rambling but I have a lot of unanswered questions!

Lee Ann Walter

Wife of Steve;

Mom to: 15; Krystle 14;

Caleb 2; 2; 10 mo.

Home Page:

http://www.homestead.com/walter7/index.html

[Guest guest]

Hi Annette!

My Doc. plans on starting me at 7mg of MTX a week plus the folic

acid. What is the folic acid for anyway? He did not tell me.

I have not started the medication. I will pick it up tomorrow.

I already have face swelling. I hope the med. does not make it

worse. I feel like I have been hanging upside down and ridding a

horse all night!! What a nice picture that is!

I know the Doc. is hoping that starting me early on this

medication will delay the onset of the more uncomfortable stages

of this disease.

I was not too sure I wanted to do this at this point but he feels

with my history and my mothers health history I should start now.

I am hoping to see some relief. I would love to feel like I

actually have some energy!

Thanks!

Lee Ann Walter

Wife of Steve;

Mom to: 15; Krystle 14;

Caleb 2; 2; 10 mo.

-

[Guest guest]

Hi Betty,

Thanks! I am so glad to have found this list. I have been

searching for a month for a group like this. I did find many for

Psoriasis but not the type of Arthritic group support that I

needed. I never knew Psoriasis had anything to do with

Arthritis. I just thought it was a skin disorder. I am glad to

have a diagnosis finally and a plan of treatment. I had been

feeling that in 10 years if I kept on like I have been I would be

in bed or dead. It is horrible how this just zaps your energy

and zest for life. I definitely went through a time of

depression. I don't have time to be depressed now with our little

ones needing constant attention.

Did you have the skin rash problems your whole life?

-Lee Ann Walter

Wife of Steve;

Mom to: 15; Krystle 14;

Caleb 2; 2; 10 mo.

[Guest guest]

Lee Ann...the MTX will probably give you relief in several weeks. The dosage

you are going to take is very low so you might escape the unpleasant side

effects. Getting treatment early may spare you the deformity many of us

have. I waited 18 months after I got sick literally overnight with PA...and

much damage was already done. You are smart...good luck, Annette

[Guest guest]

Hello Iris!

Welcome to the group!

Kathy (AIH)

Seattle area

[Guest guest]

Iris:

Welcome to the group.

Sue AIH

Wisconsin

[Guest guest]

Welcome Iris, Lynn in Wa AIH

impsych@... wrote:

> From: impsych@...

>

> I JUST WANTED TO SAY HELLO TO EVERYONE.

>

> MY NAME IS IRIS, AND I JUST JOINED THIS GROUP. I AM VERY HAPPY TO FINALLY FIND

A SUPPORT GROUP WITH PEOPLE WHO SHARE THE SAME EXPERIENCES. I HOPE TO BE

SPEAKING WITH YOU AGAIN SOON.

>

> BYE FOR NOW,

>

> IRIS

>

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

[Guest guest]

Hello Iris

Nice to hear from you!! I have a sister called Iris!

Eileen

[ ] HELLO

> From: impsych@...

>

> I JUST WANTED TO SAY HELLO TO EVERYONE.

>

> MY NAME IS IRIS, AND I JUST JOINED THIS GROUP. I AM VERY HAPPY TO FINALLY

FIND A SUPPORT GROUP WITH PEOPLE WHO SHARE THE SAME EXPERIENCES. I HOPE TO

BE SPEAKING WITH YOU AGAIN SOON.

>

> BYE FOR NOW,

>

> IRIS

>

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