New member

[Guest guest]

Hi Patti:

Welcome. You will find a wonderful, caring and informative group of people

here. I am still a 'newbie' so I will let others define remission time. I am

glad your son is doing so well with the meds.

Take care.

Patty

[Guest guest]

Hi Patti,

will be 6 in July.He used to take 25mg Methotrexate,200mg Plaquenil,12.5mg Enbrel,900mg Ibuprofin a day and almost 2 years on steroids.

Now he takes 7.5mg Methotrexate and 12.5mg Enbrel.Ever since he started the Enbrel he has been symptom free and able to just taper off of stuff with no trouble at all.Ten more weeks of MTX and it will be gone also.

I hope Noah has the same luck.

Hugs

Becki and 5 systemic

[Guest guest]

In a message dated 3/15/04 1:51:01 PM Eastern Standard Time,

mazurs05@... writes:

<<

How old is Caitlin? What are her symptoms?

Patti & Noah, 2 1/2 - poly

>>

Hi Patti:

Caitlin is 11 years old (12 in May). She initially presented (in November)

with fever (105), rash, arthritis and fatigue. Most of her symptoms are gone

now. The only thing that is sticking around is the rash. It comes everyday

somewhere on her, usually her thighs, arms or hands.

Take care.

Patty

[Guest guest]

Welcome Patti and Noah!!

This is such a great place to learn and even to vent, if needed. My

son also responded very well to the MTX injections after getting to

only about 75% relief on the oral. It's only been two months of the

shots for us so far.

As far as remission goes, that's the question of the century. Even

if there is a formal definition out there that enough people agree

on, I still think there are about a zillion more opinions about it.

I am just so happy that Noah is pain free and let's hope he stays

that way.

BTW, have you tried EMLA cream when giving the shots. That's what

we use. It is a topical anesthetic. Your dr. can write a scrip. or

ask for any samples they may have. Leave it on for an hour or two

before the shot and they don't feel a thing.

Stacia and Hunter,7,systemic,iritis

[Guest guest]

Welcome Patti!

Just wanted to add to the welcomes, I am always sad to hear about

more kids affected with this disease, but it is great to hear that

Noah is doing well thanks to the mtx! My son Bronson rsponded really

well to mtx also, but unfortunately, he had to be taken off of it due

to stomach problems. I know many kids who have been taking mtx for

years and they do just fine. As far as how long the meds are needed,

from what my doctor has said, at least 6 months of normal blood work

and no symptoms is needed before considering stopping meds. I don't

know much about " remission " , but I am hoping it is possible! Again,

welcome, i am sure you are going to find this list very helpful!

Jodi (Bronson, age 9, systemic)

[Guest guest]

Patti,

Heck NO, don't wait for a next appt...call the rheumy office and

leave a message for the dr. to call in a prescription for emla or

talk to a nurse about what samples they have and go pick them up.

It really shouldn't be a big deal. Good luck.

Stacia and Hunter,7,systemic,iritis

[Guest guest]

hi sheila ,did you have a liver biopsy to diagnose your aih?are you under a liver specialist ?thanks jane

[ ] New Member

Hi, My name is Sheila, I'm 50 and I live in the UK.I was diagnosed as having AIH in Feb 04 after becoming ill in August last year with acute arthritis. In Feb I was prescribed 40mg prednisolone and 50mg azathioprine daily. After 28 days the pred was reduced to 30mg daily.I have to go to the hospital every week for blood tests and so far everything is going well. I worry about my condition/illness and seem to have put my life on hold, if you know what I mean. Did this happen to any of you? I don't know if I'm eating the right food and although I'm tired, should I be doing some exercises. I've read the messages over the past 3 days since joining and the help and advice you give and the concern the group shows for each other is touching and heart warming. If anyone as any tips or advice I would love to hear from you. Regards to all and take care. Sheila.

[Guest guest]

Hello and Welcome to the group.

It's always sad to hear that there is another child out there suffering from this horrible disease.. But this place is awesome... All of the support and information you need. Take Care..

(polyarticular JRA and Spondyloarthropathy, 19)

[Guest guest]

-Hi Sonya..

Its good to " meet " you, although im sad to hear of yet another child

suffering with this. it sounds like your daughter is doing well and

takes it all in her stride. Good to for her!!! What is your daughters

name??

YOuve been dealing with this for quite a few years so im sure you are

quite an expert and I food forward to your input and insight.

Hugs Helen, mom to (6,systemic)

-- In , " Sonya " <sroach0004@e...> wrote:

> Hello Everyone,

>

> I guess that I will just jump right in and tell you a tad about why

> I joined this group. My youngest daughter has Polyarticular JRA.

She

> was diagnosed when she was just 15 months old. The first signs of

> her JRA showed when I was 4 months pregnant. She had hydro-

nephritis

> in her left kidney which showed up during my first ultrasound.

>

> After she was born, the doctors did the usual run of tests, just to

> find out that her kidneys worked perfectly and was puzzled to why

> she had the inflamation in her kidney, but she continued the

monthly

> check-ups with a Nephrologist.

>

> I breastfed her until she was 15 months old. As soon as she was

> weaned, the joints started swelling. Her left knee was the first

> that I noticed. She woke from a nap and could barely walk

> afterwards. Then I noticed that her knee was almost the size of a

> navel orange! I took her straight to the family doctor, and he was

> just as puzzled as I was. He said that it looked like " an old

> football injury. " He then sent her to a Orthopaedic. He looked at

> her, said that he wouldn't have a clue as to how to treat her, and

> we were finally was sent to a Ped. Rheumatologist. It didn't take

> long at all to find out what was wrong after that. Her SED rate was

> so high, they stopped counting.

>

> She has a great doctor that keeps in contact with her weekly by

> phone and she sees him regulary every 8 weeks. Right now she is on

> Prednisolone, Methotrexate, Naprosen, and Enbrel.

>

> She has been on other medications in the past including Remicade,

> Sulfasalazine, and countless others.

>

> She has rheumatoid nodules on her wrists, and knees. Her worst

> joints are are knees, ankles, wrists, and most of her fingers.

>

> She lives her life as normal as she can. She is in 5th grade now,

> and is an excellant student. Her teachers and classmates are all

> helpful to her when needed. Her classmates will carry her bookbag,

> her lunchtray, or copy notes for her. She is also allowed to use a

> laptop computer at school since it is easier for her to type than

to

> handwrite.

>

> I look forward to reading more of your stories. Thank you for

> allowing me to be a part of this group!

[Guest guest]

Sonya,

Don't you wish you had this kind of access to wonderful information

and support for the last 11 years??? I only had to go through HE**

for almost 4 years before I found this place.

Welcome and we look forward to helping you and learning from you!!!

Stacia and Hunter,7,systemic.iritis

[Guest guest]

Hi, my name is Donna and I want to welcome you to the best place on the internet for JRA. I agree with the others in that we hate seeing another child with this disease but that this is an awesome place. You will find caring, compassionate parents, teens and adults like myself who are JRA vets. Jump in anytime we are here to support each other! Hugs and smiles and Welcome!!!

[Guest guest]

Sonya. Welcome to the group. I know that you will find comfort here.

How old is your daughter and what is her name? I pray that she feels

better and that all those meds work!

Alia and Caroline, age 2, pauci and uveitis

-- In , " Sonya " <sroach0004@e...> wrote:

> Hello Everyone,

>

> I guess that I will just jump right in and tell you a tad about why

> I joined this group. My youngest daughter has Polyarticular JRA.

She

> was diagnosed when she was just 15 months old. The first signs of

> her JRA showed when I was 4 months pregnant. She had hydro-

nephritis

> in her left kidney which showed up during my first ultrasound.

>

> After she was born, the doctors did the usual run of tests, just to

> find out that her kidneys worked perfectly and was puzzled to why

> she had the inflamation in her kidney, but she continued the

monthly

> check-ups with a Nephrologist.

>

> I breastfed her until she was 15 months old. As soon as she was

> weaned, the joints started swelling. Her left knee was the first

> that I noticed. She woke from a nap and could barely walk

> afterwards. Then I noticed that her knee was almost the size of a

> navel orange! I took her straight to the family doctor, and he was

> just as puzzled as I was. He said that it looked like " an old

> football injury. " He then sent her to a Orthopaedic. He looked at

> her, said that he wouldn't have a clue as to how to treat her, and

> we were finally was sent to a Ped. Rheumatologist. It didn't take

> long at all to find out what was wrong after that. Her SED rate was

> so high, they stopped counting.

>

> She has a great doctor that keeps in contact with her weekly by

> phone and she sees him regulary every 8 weeks. Right now she is on

> Prednisolone, Methotrexate, Naprosen, and Enbrel.

>

> She has been on other medications in the past including Remicade,

> Sulfasalazine, and countless others.

>

> She has rheumatoid nodules on her wrists, and knees. Her worst

> joints are are knees, ankles, wrists, and most of her fingers.

>

> She lives her life as normal as she can. She is in 5th grade now,

> and is an excellant student. Her teachers and classmates are all

> helpful to her when needed. Her classmates will carry her bookbag,

> her lunchtray, or copy notes for her. She is also allowed to use a

> laptop computer at school since it is easier for her to type than

to

> handwrite.

>

> I look forward to reading more of your stories. Thank you for

> allowing me to be a part of this group!

[Guest guest]

Thank you all for the warm welcome!

My daughter's name is Amber and she is now 11 years old.

> > Hello Everyone,

> >

> > I guess that I will just jump right in and tell you a tad about

why

> > I joined this group. My youngest daughter has Polyarticular JRA.

> She

> > was diagnosed when she was just 15 months old. The first signs of

> > her JRA showed when I was 4 months pregnant. She had hydro-

> nephritis

> > in her left kidney which showed up during my first ultrasound.

> >

> > After she was born, the doctors did the usual run of tests, just

to

> > find out that her kidneys worked perfectly and was puzzled to why

> > she had the inflamation in her kidney, but she continued the

> monthly

> > check-ups with a Nephrologist.

> >

> > I breastfed her until she was 15 months old. As soon as she was

> > weaned, the joints started swelling. Her left knee was the first

> > that I noticed. She woke from a nap and could barely walk

> > afterwards. Then I noticed that her knee was almost the size of a

> > navel orange! I took her straight to the family doctor, and he

was

> > just as puzzled as I was. He said that it looked like " an old

> > football injury. " He then sent her to a Orthopaedic. He looked at

> > her, said that he wouldn't have a clue as to how to treat her,

and

> > we were finally was sent to a Ped. Rheumatologist. It didn't take

> > long at all to find out what was wrong after that. Her SED rate

was

> > so high, they stopped counting.

> >

> > She has a great doctor that keeps in contact with her weekly by

> > phone and she sees him regulary every 8 weeks. Right now she is

on

> > Prednisolone, Methotrexate, Naprosen, and Enbrel.

> >

> > She has been on other medications in the past including Remicade,

> > Sulfasalazine, and countless others.

> >

> > She has rheumatoid nodules on her wrists, and knees. Her worst

> > joints are are knees, ankles, wrists, and most of her fingers.

> >

> > She lives her life as normal as she can. She is in 5th grade now,

> > and is an excellant student. Her teachers and classmates are all

> > helpful to her when needed. Her classmates will carry her

bookbag,

> > her lunchtray, or copy notes for her. She is also allowed to use

a

> > laptop computer at school since it is easier for her to type than

> to

> > handwrite.

> >

> > I look forward to reading more of your stories. Thank you for

> > allowing me to be a part of this group!

[Guest guest]

Sonya! You are welcome. We hope that you are able to find answers for

Amber here!

Alia and Caroline, age 2, pauci and uveitis

> > > Hello Everyone,

> > >

> > > I guess that I will just jump right in and tell you a tad about

> why

> > > I joined this group. My youngest daughter has Polyarticular

JRA.

> > She

> > > was diagnosed when she was just 15 months old. The first signs

of

> > > her JRA showed when I was 4 months pregnant. She had hydro-

> > nephritis

> > > in her left kidney which showed up during my first ultrasound.

> > >

> > > After she was born, the doctors did the usual run of tests,

just

> to

> > > find out that her kidneys worked perfectly and was puzzled to

why

> > > she had the inflamation in her kidney, but she continued the

> > monthly

> > > check-ups with a Nephrologist.

> > >

> > > I breastfed her until she was 15 months old. As soon as she was

> > > weaned, the joints started swelling. Her left knee was the

first

> > > that I noticed. She woke from a nap and could barely walk

> > > afterwards. Then I noticed that her knee was almost the size of

a

> > > navel orange! I took her straight to the family doctor, and he

> was

> > > just as puzzled as I was. He said that it looked like " an old

> > > football injury. " He then sent her to a Orthopaedic. He looked

at

> > > her, said that he wouldn't have a clue as to how to treat her,

> and

> > > we were finally was sent to a Ped. Rheumatologist. It didn't

take

> > > long at all to find out what was wrong after that. Her SED rate

> was

> > > so high, they stopped counting.

> > >

> > > She has a great doctor that keeps in contact with her weekly by

> > > phone and she sees him regulary every 8 weeks. Right now she is

> on

> > > Prednisolone, Methotrexate, Naprosen, and Enbrel.

> > >

> > > She has been on other medications in the past including

Remicade,

> > > Sulfasalazine, and countless others.

> > >

> > > She has rheumatoid nodules on her wrists, and knees. Her worst

> > > joints are are knees, ankles, wrists, and most of her fingers.

> > >

> > > She lives her life as normal as she can. She is in 5th grade

now,

> > > and is an excellant student. Her teachers and classmates are

all

> > > helpful to her when needed. Her classmates will carry her

> bookbag,

> > > her lunchtray, or copy notes for her. She is also allowed to

use

> a

> > > laptop computer at school since it is easier for her to type

than

> > to

> > > handwrite.

> > >

> > > I look forward to reading more of your stories. Thank you for

> > > allowing me to be a part of this group!

[Guest guest]

Hi Kim:

Welcome to the group. There are wonderful, supportive and informed people on

this list. They have been my lifeline since my daughter got sick.

I know that flares can happen at any time. Sorry to hear she flared after

three years of remission. I am glad the pain and swelling are gone. My

daughter's joints have swelled, but from visual, have no noticeable damage to

them.

What has your rheumy said about the condition of her joints in her knees?

My daughter, Caitlin, is still undiagnosed. She first presented with a sort

throat, fever of 105, rash and arthritis. She was hospitalized the day after

Thanksgiving of 2003 for five days. She was out of school for about three

months. The fevers, arthritis and sore throat are gone, thank God. Her rash

shows itself daily (although lately, there has been a few days that it hasn't

shown up at all:) with spots now. Because she had a positive ASO, they

initially

thought Rheumatic Fever. Now the rheumy believes she has Still's

Disease/SoJRA. She has a problem with fatigue and the fevers were with her for

about 2

months.

She was on Prednisone, Cefzil, Plaquenil and MTX. Others were tried, but

made her vomit. She was tapered down to 2mg of Prednisone and was taken off due

to sadness and crying (she was euphoric at 18mg). She also complained of

headaches and starting losing her hair, so she came off the MTX and Plaquenil.

We

added Folic Acid because of the hair loss and she was on it for three weeks.

As of Thursday, she is off of that too. She is on Cefzil only until our

rhuemy discusses her case with an ID doctor on whether or not to treat her with

prophylactic antibiotics.

Right now, Caitlin is doing wonderfully, but I do remember the bad times (all

to vividly). I know how heartwrenching it is to see your child in pain. How

we worry about the disease, their future and giving them these potent meds.

The hard decisions that we have to make.

Vent, ask questions, share your triumphs etc. We are all here for you.

Take care.

Patty

[Guest guest]

Welcome Kim,

Sadly and gladly, another member...

Your daughter must be adorable and very strong. That strength will

get her through life nicely.

If she's still in almost constant pain, can you share her

medications and doses with us? Hopefully she's on some of the

aggressive meds. to stop any further joint damage. What kind of JRA

does she have? Is she tripping a lot because her knees are not

functioning properly because of deformity or because of the pain?

Here you came to find answers and I am firing questions!! Sorry.

This is a fantastic place to not only get answers, opinions and

vent, but to be able learn from others experiences. I am so happy

to have found this site and I'm glad you did too. I went

throughalmost four years of isolation with the JRA before finding

this wonderful outlet.

Welcome again,

Stacia and Hunter,7,systemic,iritis

> Hello,

> My name is Kim and my daughter has JRA. She was diagnosed at 18

> months and she just turned 6 this week.

[Guest guest]

Kim. Welsome to the group, although we are all sad to see another

little kid inflicted with JRA!

I know you have a ton of questions and this group is definitely the

place to come for those! How long will this last? It's hard to say.

Each case is different. If you are one of the lucky one's it won't

last too long. It is very possible to have another flare up. Which

meds is she on? Have they began any tapering? I don't know about the

knee's. My daughter knee's are slightly misshapened. I have no idea

if that will change. PT will probably assist with that as well time.

Their little bodies are still growing...

Let us know how we can help!

Alia and Caroline, age 2, poly and uveitis

> Hello,

> My name is Kim and my daughter has JRA. She was diagnosed at 18

> months and she just turned 6 this week. My husband and I have been

> dealing with her symptoms for awhile and I thought we had it under

> control. When I read about her disease, I feel thankful she has

a "

> mild " case if you can call it that- although it doesn't seem that

> way to me. We thought she was in remission from 3 years old until

> last summer when she had a flare up and since then she has been on

> medicine. The pain and the swollen knees ( that's where it hits

> her) are gone. We are glad but ever so cautious.

> I guess I'm just looking for some answers, like how long will this

> last? Will she have another flare up? Are her knees which are

> completly mishapen, going to go back to " normal " ?

> When I tell someone that she has JRA they don't believe me because

> she is so active and looks fine. Only my family knows that she

> thinks of pain as normal and she doesn't even think to tell me

they

> hurt because that is all she has known. Only my family knows that

I

> have to carry my 6 year old out of bed some mornings, like a

baby.

> Only my family knows how sick the meds are making her, how she

wears

> tights to school becasue she doesn't want anyopne to see her

brusies

> from constantly tripping over herself.

> I am hoping not for answers, but for support from people who know

> what this is like. From people who live with what we do, or

worse.

> Thanks for listening,

> Kim

[Guest guest]

-HI Kim.

Welcome to the group, im sorry you had to join though.

You will find a wealth of information and answers here.. but more

than that you will find so much support. No one should have to go

though something like this without the support. Its been a godsend to

me...

hugs Helen and (6,systemic)

-- In , Kleeman3@a... wrote:

> Hello,

> My name is Kim and my daughter has JRA. She was diagnosed at 18

> months and she just turned 6 this week. My husband and I have been

> dealing with her symptoms for awhile and I thought we had it under

> control. When I read about her disease, I feel thankful she has

a "

> mild " case if you can call it that- although it doesn't seem that

> way to me. We thought she was in remission from 3 years old until

> last summer when she had a flare up and since then she has been on

> medicine. The pain and the swollen knees ( that's where it hits

> her) are gone. We are glad but ever so cautious.

> I guess I'm just looking for some answers, like how long will this

> last? Will she have another flare up? Are her knees which are

> completly mishapen, going to go back to " normal " ?

> When I tell someone that she has JRA they don't believe me because

> she is so active and looks fine. Only my family knows that she

> thinks of pain as normal and she doesn't even think to tell me they

> hurt because that is all she has known. Only my family knows that I

> have to carry my 6 year old out of bed some mornings, like a baby.

> Only my family knows how sick the meds are making her, how she

wears

> tights to school becasue she doesn't want anyopne to see her

brusies

> from constantly tripping over herself.

> I am hoping not for answers, but for support from people who know

> what this is like. From people who live with what we do, or

worse.

> Thanks for listening,

> Kim

[Guest guest]

I just want to say welcome to you and your family Heidi! I hope you find what you need here!

Randylullepulle <billerbill@...> wrote:

I just signed up for this group. I'm Heidi, living in southern california with my husband and our 2 1/2 year old son (plus a lot of 4 legged family members). I was diagnosed with Autoimmune hepatitis about 10 years ago, and am currently on prednisone and imuran. Glad to be here :)Heidi Gardarsson

[Guest guest]

In a message dated 7/19/2004 6:17:32 PM Eastern Daylight Time,

ahoose@... writes:

I would appreciate any response.

Dear Astrid,

Please go to our sister site, iThyroid.com, to learn about ways to treat

thyroid disease with nutrition, supplements and alternative medicine.

Best,

AntJoan

[Guest guest]

Ed it sound like young Ried has the kind of spirit it takes to

deal with this stuff! I have had joint injections and it does give some

relief. I can't say how long it with last, its different for everyone.

I'm glad they are getting him to the eye doc for the inflamation.

And this is a great group of caring people who will offer as much support

and understanding and information as possible. So pick their brains! and

Pryaers for young Ried.

Rusty O'Limbs

[Guest guest]

my best advise would to be keep doing as you are, keep a journal of

s symptons and ask and make the doctors answer your questions.

The parents on this list will for sure keep watch for your updates and be

ready to help with suggestions and advise.

Many prayers for young . as I too had experienced those very same

symptons in my 36 years of jra, since age 13.

Rusty

[Guest guest]

Hi ,

First let me say congradulations on getting the consult with another ped

rheumy.The one you have is just not aggressive enough.Trying only an NSAID is

old

school thought.

Stills is a very serious disease and needs to be treated as such.Start

keeping a journal of symptoms,if you haven't already.It can be realy helpful to

you

and the doctors.

Welcome to the group and feel free to ask anything and/or just vent,thats

what we are here for.

Hugs

Becki and 6 systemic

[Guest guest]

In a message dated 7/27/04 10:04:53 PM Central Daylight Time,

ed.herran@... writes:

> Has anyone had cortisone injections into their joints?

> If so, did they relieve some stiffness or all of it?

> How long did the injections last?

> Can we expect more joints to be effected?

>

>

Hi Ed,

Welcome to the group.

My son has had his lft ankle drained and injected twice with much relief.The

first one only lasted a month because he was non compliant about wearing his

brace the first few days but he was totaly pain and stiff free.The second time

they put him in a hard cast for 2 weeks with a walking shoe.He participated in

Gym class and ran allover the playground with cast in tow.The effects can

last 6 months and as long as a year or more.

A wonderful steroid called Aristopan was off the market for a long time but

it's back.It's a long acting drug and you need to tell the rheumy or ortho(who

ever is doing it) that you want it.We were stuck with Depo Medrol.

It is possible that more joints will become involved.You didn't say how long

since diagnosis but if 1 more joint pops up in the initial 6 months then it's

changed to Poly.After the first 6 months it's still Pauci JRA but with a Poly

cource.

Welcome to the group and ask any question you want and we are a good place to

vent also.

Hugs

Becki and 6 systemic

[Guest guest]

Welcome . I hope someone chimes in from the Northeast to help you.

I found on the Adult Still's listserve and recommended that she pop

over here. I told her how great Georgina is. Georgina is probably swamped

after all of the new people from AJAO. (n, 15, systemic)

New Member

> My 11 year old son has just been diagnosed with Still's disease. He has

ankle

> pain and at night he often feels as if he is on fire yet he has no

> Temperature.This past Dec he had high fever and his abdominal lymph

> nodes were swollen. That lasted about 5 weeks.At the time they thought it

was

> just a virus. Have been to a rheumatologist who put him on Naproxen which

> helps with the ankle pain but not the burning feeling at night. One day

> feels fine and the next day he feels awful. I have a consult with a pedi

> Rheumatolgist in Philadelphia (We are from NJ)Just looking for any advice

or

> assistance you can offer.

>

>

>

>

>

>

>