Systemic JRA

[Guest guest]

,

Welcome!

My daughter has polyarticular JRA so her diagnosis and disease process are

not the same as your son's. There are many systemic parents here, though,

and you'll hear from lots of them in the next few days.

Duke University Medical Center has an outstanding reputation and I believe

you are in good hands there. But there is absolutely nothing wrong with

looking for a second opinion. You need to do whatever makes you most

comfortable as you move forward.

Unfortunately parents can't make predictions any more than the docs can.

That's one of the very frustrating things about this disease. Research is

beginning to identify markers that predict disease severity, but I don't

think we're " there " yet. All I can tell you is that aggressive treatment is

best. The meds are frightening, but they are your child's best hope for

regaining the quality of life that we all want for our kids.

Liz

Systemic JRA

Help! My son who is age 6 was at Duke Hosp for 4 weeks and dx w/

systemic jra. He has had high fevers for 6 weeks. Now, with steroids

that is under control. We've had him home for 3 weeks, so were 7

weeks into this. We're frightened to death. Sad about his changed

body, demeanor etc. I would love for anyone in the group to share

their similar stories. I have so many questions? Should we go with a

2nd opinion? was this really Lyme disease and they blew the

diagnosis? what can I expect 2 months from now, 7 months from now?

the doctors do not make predictions.

Thanks, so much

Sokol

in NC

[Guest guest]

, Our daughter, n, is in her sixth year with systemic jra. She

is 15 years old. I always explain the disease like it is a roaring fire

that has to be contained at the beginning. You are at a good hospital, but

if a second opinion makes you feel better, then do it. We have sought out

up to three opinions. I find the most difficult part of this disease are

the decisions that we have to make about medications. Do you throw the

nuclear arsenal at the child, or go with a less aggressive approach? There

is no way for the doctors to know if your child's disease is a really

stubborn one or one that responds easier to the medication. As Liz said, we

can't tell you how long your child will be on steroids. There are some kids

that have been on low dose for years, and others that use them just to get

over the bumps in the road. n has been on them three times. The first

was for 13 months, then 9 months, and then 5 months. You want to taper

pretty slow or you will end up right where you started off with.

Keep a diary on your childs symptoms, medications, rashes, etc. We have

kept one for five years and it is invaluable. This disease can become a

blur. We are off to the hospital in a few minutes to get n some joint

injections. (n, 15, systemic)

Systemic JRA

>

>

>

> Help! My son who is age 6 was at Duke Hosp for 4 weeks and dx w/

> systemic jra. He has had high fevers for 6 weeks. Now, with steroids

> that is under control. We've had him home for 3 weeks, so were 7

> weeks into this. We're frightened to death. Sad about his changed

> body, demeanor etc. I would love for anyone in the group to share

> their similar stories. I have so many questions? Should we go with a

> 2nd opinion? was this really Lyme disease and they blew the

> diagnosis? what can I expect 2 months from now, 7 months from now?

> the doctors do not make predictions.

>

> Thanks, so much

> Sokol

> in NC

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Welcome, . I agree that you are at a great facility (my son's

first rheumy is there and she is excellent. We miss her!) and of course,

if you feel the need a second opinion cannot hurt. For us, it took 7

months of various drs before one visit with the rheumy and she knew

right off it was JRA for my son. You have come to a list with lots of

info and support, especially for systemics. I well remember the fear of

the beginning with this disease. I can tell you that with proper meds,

your son will feel better. It may take time to get the right combo to

figure out what works for him. When this started with my son, he could

not walk without a limp and running was out. He was 13. Imagine being a

13 year old baseball player and you can't run. Two years into it, and

the right combo of meds and he was running again. Now, four years after

diagnosis and almost five years of disease (his symptoms began in March,

2000), you cannot tell by looking at him that he has

JRA/Spondyloarthropy. Yes, he needs meds to keep it up, but we are

hopeful that we can continue to reduce them and soon the word remission

may be one we can use. I know that this is a hard time for you and your

family. I suggest you educate yourself the best you can and this list,

with all the info Georgina posts and everyone's personal experiences is

a great place to start. I am sorry you family is going through this, but

glad you have found us. Michele ( 17, pauci & spondy)

Systemic JRA

Help! My son who is age 6 was at Duke Hosp for 4 weeks and dx w/

systemic jra. He has had high fevers for 6 weeks. Now, with steroids

that is under control. We've had him home for 3 weeks, so were 7

weeks into this. We're frightened to death. Sad about his changed

body, demeanor etc. I would love for anyone in the group to share

their similar stories. I have so many questions? Should we go with a

2nd opinion? was this really Lyme disease and they blew the

diagnosis? what can I expect 2 months from now, 7 months from now?

the doctors do not make predictions.

Thanks, so much

Sokol

in NC

[Guest guest]

--

HI again ,

I know there are many parents on his list who can completely relate

to what you are feeling right now, and I am one of them! It is so

devistating to see your child suffer with this difficult illness, my

son too was diagnosed with systemic JRA in the summer of 2003. He

was unable to walk, could barely move, had lung, spleen, and heart

issues, and had fevers of 106, along with a rash that covered his

body. My husband and I were never so scared in our lives than we

were during that time. You have found a great place here for lots of

info. I am glad that the steroid has brought down your son's fever,

I am sure your doctor will begin to try other medications soon so

that he can slowly wean your child off the steroid. Is he seeing a

pediatric rheumatologist? About getting a second opinion, getting a

diagnosis of JRA is a process of illimination, as well as gathering

information about symptoms, there are many other illnesses that

mimic the symptoms of systemic JRA, so testing for every possible

disease is necessary. If you feel uncertain that enough testing was

done, then question your doctor. As far as what the future holds,

there is no way to know what will happen from one day to the next,

you will learn to try and take things one day at a time, and

thankfully, there are many medications out there that really do work

and can give your child a normal, healthy, active life. My son now

is doing extremely well, he takes naproxen occasionally, and he is

active, does well in school, and feels good, we feel very lucky, but

we also take this one day at a time, because we never know what may

happen. I hope your son continues to improve, hang in there.

Jodi, Bronson, age 9, systemic

- In , " asokol5 " <asokol5@y...> wrote:

>

>

> Help! My son who is age 6 was at Duke Hosp for 4 weeks and dx w/

> systemic jra. He has had high fevers for 6 weeks. Now, with

steroids

> that is under control. We've had him home for 3 weeks, so were 7

> weeks into this. We're frightened to death. Sad about his changed

> body, demeanor etc. I would love for anyone in the group to share

> their similar stories. I have so many questions? Should we go with

a

> 2nd opinion? was this really Lyme disease and they blew the

> diagnosis? what can I expect 2 months from now, 7 months from now?

> the doctors do not make predictions.

>

> Thanks, so much

> Sokol

> in NC

[Guest guest]

a second opinion is always a good idea

as far as I'm concerned. and I am not one who is in favor of long term

usage of steroids, especially for children. Even though steroids are most

often the best treatment for combatting this jra...

And as Liz said, there are systemic children who have to treated with

steroids for long periods of time and it is a decision that the doctor

and parents have to make...of course weighting the long term effects and

benefits of the treatment.

There is a lot of wonderful folks here who can really offer a lot of

advise and opinions as to many treatments for this disease....

many prayers and good wishes for you and your little one....

Rusty (36 1/2 years vet of jra systemic)

[Guest guest]

-HI ..

Sorry you had to join the group, but we are glad to have you anyway..

My son Nick has been on prednisone since last Jan.. coming up to a

year.

He was only suppose to be on them a short while, but we have had a

tough time tapering him off. Everytime we have tried to cut them

down his symtoms would get worse...hes now on 3mg a day, but we

tried to take 1/2mg away a few months ago and this caused the high

temps to return.

It can be a long and frustating road, especially in the beginning,

but hopefully they can find the right drug cocktail quickly. Nicks

doctor describes it as always chasing our tails and it doesn feel

like that sometimes.

Nick is currently taking Enbrel,MTX,prednisone,vioxx( switching to

mobic next week) and folic acid. We have been dealing with this for

nearly 2 yrs....

keep a journal of the temos, rash, take pictures of the rashes and

document all you can. This will really help at appt times...

Good luck and ask any questions you might have, you are sure to get

an answer here..

Again, Welcome

Hugs Helen and (7,systemic)

-- In , " asokol5 " <asokol5@y...> wrote:

>

>

> Help! My son who is age 6 was at Duke Hosp for 4 weeks and dx w/

> systemic jra. He has had high fevers for 6 weeks. Now, with

steroids

> that is under control. We've had him home for 3 weeks, so were 7

> weeks into this. We're frightened to death. Sad about his changed

> body, demeanor etc. I would love for anyone in the group to share

> their similar stories. I have so many questions? Should we go with

a

> 2nd opinion? was this really Lyme disease and they blew the

> diagnosis? what can I expect 2 months from now, 7 months from now?

> the doctors do not make predictions.

>

> Thanks, so much

> Sokol

> in NC

[Guest guest]

- you have received lots of great advice here. I thought I

would chime in since we are going through much of the same thing. My

daughter, who is 1.5 years old, suffered from weeks of high fevers

and we also spent 3+ weeks at Stanford hospital. Along with the high

fevers, she had an enlarged spleen, was anemic and had a very high

ferratin rate. The doctors ran MANY tests - including testing for

all sorts of viral and bacterial infections. All the tests came out

negative, so the doctor's tentative diagnosis is systems JRA. They

also treated her with steroids, which has brought the fever down and

her other symptoms have also improved. We are slowly tapering the

steroids (its been 1.5 months and we have 1 month to go), and so far

so good. The doctors have not treated my daughter with any other

medication (other than prilosec to help her tummy handle the

steroids) at this time because they are not convinced that it is JRA,

since she has not had any joint swelling or pain that we have been

able to recognize. We are playing the wait and see game. I'm

curious that you have received a positive diagnosis so quickly. Does

your son show signs of joint swelling, rash etc. as well as the

fevers?

To answer some of your questions - I would recommend getting a second

opinion. We got a second and third opinion, both of whom agreed with

the original doctors. But it was reassuring to have them look over

her file, to hear that they thought the tests that had been done were

complete and that the doctor's plan was a good one. As to your other

questions, as everyone else indicated, there doesn't appear to be any

rhyme or reason as to how this disease proceeds and effects each

individual child, so there is now way to predict what we can expect

next month, in 6 months, a year, etc. We are trying to learn to

appreciate where we are at today, and hope for the best in the

future. I have found it very helpful to educate myself about this

condition - it has enabled me to ask lots of questions of the doctor

so I understand why they are treating this as they are. Its

overwhelming, but the more information the better.

Good luck with this! You are not alone. I've found this group very

helpful to getting lots of information about systemic JRA.

am

Northern California

(mom to Layla, 1.5 years old)

>

>

> Help! My son who is age 6 was at Duke Hosp for 4 weeks and dx w/

> systemic jra. He has had high fevers for 6 weeks. Now, with

steroids

> that is under control. We've had him home for 3 weeks, so were 7

> weeks into this. We're frightened to death. Sad about his changed

> body, demeanor etc. I would love for anyone in the group to share

> their similar stories. I have so many questions? Should we go with

a

> 2nd opinion? was this really Lyme disease and they blew the

> diagnosis? what can I expect 2 months from now, 7 months from now?

> the doctors do not make predictions.

>

> Thanks, so much

> Sokol

> in NC

[Guest guest]

Hello,

My daughter is 17 with poly and our road on the journey has been different but I

still know the pain you feel. It is overwhelming learning of this disease, its

treatments, prognosis etc. I wish you peace and comfort. Please know that the

beginning is the worse with the not knowing. Things seem easier after awhile

because it is not as frightening. A second opinion is always an option. It can

not hurt anything at all to have a second opinion. We spent months searching for

an answer. When the doctor gave us the diagnosis everything seemed to fit and

make sense even though the treatment, medications etc were scary. I wish you and

your family comfort at this time.

e, mom to joe 17 poly

__________________________________________________

[Guest guest]

am,

My son did have rashes, along with the high fevers and

joint swelling. But, early on they did not have a clue

what it was. We went from ecoli, rocky mtn spotted

fever, lukemia ( no test was dome for ymes...uuuggghh

), kawasaki, staff. Finally, as a last resort they

tried steroids..because he responded to them, they

felt like it was JRA ).

dad of Mitch..6 yrs old...7 weeks JRA

--- maryamjn <maryamjn@...> wrote:

>

> - you have received lots of great advice

> here. I thought I

> would chime in since we are going through much of

> the same thing. My

> daughter, who is 1.5 years old, suffered from weeks

> of high fevers

> and we also spent 3+ weeks at Stanford hospital.

> Along with the high

> fevers, she had an enlarged spleen, was anemic and

> had a very high

> ferratin rate. The doctors ran MANY tests -

> including testing for

> all sorts of viral and bacterial infections. All the

> tests came out

> negative, so the doctor's tentative diagnosis is

> systems JRA. They

> also treated her with steroids, which has brought

> the fever down and

> her other symptoms have also improved. We are

> slowly tapering the

> steroids (its been 1.5 months and we have 1 month to

> go), and so far

> so good. The doctors have not treated my daughter

> with any other

> medication (other than prilosec to help her tummy

> handle the

> steroids) at this time because they are not

> convinced that it is JRA,

> since she has not had any joint swelling or pain

> that we have been

> able to recognize. We are playing the wait and see

> game. I'm

> curious that you have received a positive diagnosis

> so quickly. Does

> your son show signs of joint swelling, rash etc. as

> well as the

> fevers?

>

> To answer some of your questions - I would recommend

> getting a second

> opinion. We got a second and third opinion, both of

> whom agreed with

> the original doctors. But it was reassuring to have

> them look over

> her file, to hear that they thought the tests that

> had been done were

> complete and that the doctor's plan was a good one.

> As to your other

> questions, as everyone else indicated, there doesn't

> appear to be any

> rhyme or reason as to how this disease proceeds and

> effects each

> individual child, so there is now way to predict

> what we can expect

> next month, in 6 months, a year, etc. We are trying

> to learn to

> appreciate where we are at today, and hope for the

> best in the

> future. I have found it very helpful to educate

> myself about this

> condition - it has enabled me to ask lots of

> questions of the doctor

> so I understand why they are treating this as they

> are. Its

> overwhelming, but the more information the better.

>

> Good luck with this! You are not alone. I've found

> this group very

> helpful to getting lots of information about

> systemic JRA.

>

> am

> Northern California

> (mom to Layla, 1.5 years old)

>

>

> >

> >

> > Help! My son who is age 6 was at Duke Hosp for 4

> weeks and dx w/

> > systemic jra. He has had high fevers for 6 weeks.

> Now, with

> steroids

> > that is under control. We've had him home for 3

> weeks, so were 7

> > weeks into this. We're frightened to death. Sad

> about his changed

> > body, demeanor etc. I would love for anyone in the

> group to share

> > their similar stories. I have so many questions?

> Should we go with

> a

> > 2nd opinion? was this really Lyme disease and they

> blew the

> > diagnosis? what can I expect 2 months from now, 7

> months from now?

> > the doctors do not make predictions.

> >

> > Thanks, so much

> > Sokol

> > in NC

>

>

>

>

__________________________________________________

[Guest guest]

Hello there,

I know this is a very difficult time for you, your son and

family....Many of the parents that will respond to your email have

been in your shoes. If your son has been diagnosed with systemic

jra...this will quite possibly be one of the biggest challenges of

your life...not to scare you but it is a marathon and not a sprint.

One wonderful thing is that you have found this list and many people/

children that have ALSO been down this path..you are not alone.

My son was diagnosed at a year of age with fever, rash, anemia,

and eventually joint inflammation and pain. He had a severe course

of systemic symptoms. Some children (maybe your son?) can have one

episode (monocyclical) and bascially get over the disease in a fairly

short peroid of time...others may have peroids of relief and periods

of flare (polycyclical) and others have a constant flare

(persistent). Our son had more of a persistent flare requiring

IV steroids, motrin for pain and methotrexate. He was a very sick

little guy (especially in the beginning...twice daily fevers for 8

months solid....sed rate of 115...you'll get to know more about labs

than you ever dreamed). Systemic kids have the inflammation in their

whole bodies....sometimes organs, joints, you'll see it in their

blood work, etc. Anyways we just kind of treaded water with for

about 3 1/2 years...things would get a little better but the fevers

would always seem to come back...and when they get a fever they feel

very sick....his joints seemed to be more and more affected as time

went on (mainly his wrist, knees and ankles). He never lost the

rash...it would be gone in the mornings...and by afternoon and

evening it was anywhere on his body. Not sure if your son has had a

rash?

To fast forward this long story....he is now five and earlier this

year (january) he started on a biologic agent called Kineret (drugs

like Enbrel, Remicade, Kineret are all fairly new drugs to treat

JRA).He responded DRAMATICALLY!!!!! HAVE HOPE THAT THINGS WILL GET

BETTER, THEY CAN. His rash was gone after one dose....his lab work is

normal...he has no arthritis....It has truly been a miracle for

and our family. He looks and feels great! You will hear other

stories of children responding to different therapies and all of

these kids are unique in what works for one might not work for

another.... is seen at Texas ish Rite in Dallas and they

are very excited about Kineret for systemic children. You might look

at a post I made a week or so ago about their research and experience

with Kineret in systemic kids.

If you have any questions about systemic jra ....don't hesitate to

email me directly at mwestfal " at " ktc.com. I always welcome any

questions from parents and feel it is so helpful to talk with

families that have been in the same position. Hope things are going

okay for the holidays.....Sincerely, Marguerite and (5

systemic)

>

>

> Help! My son who is age 6 was at Duke Hosp for 4 weeks and dx w/

> systemic jra. He has had high fevers for 6 weeks. Now, with

steroids

> that is under control. We've had him home for 3 weeks, so were 7

> weeks into this. We're frightened to death. Sad about his changed

> body, demeanor etc. I would love for anyone in the group to share

> their similar stories. I have so many questions? Should we go with

a

> 2nd opinion? was this really Lyme disease and they blew the

> diagnosis? what can I expect 2 months from now, 7 months from now?

> the doctors do not make predictions.

>

> Thanks, so much

> Sokol

> in NC

[Guest guest]

,

I am sorry to hear about the diagnosis, but we've all been there and

can help. The good news seems to be that you got a diagnosis very

quickly. It may not seem like it to you, but some of us have gone

months and years before diagnosis.

My son started having problems when he was three and we got

diagnosis of systemic onset JRA when he was 7 1/2. He couldn't

walk, had all kinds of skin rashes, tummy and GI problems, fevers on

and off up to 106, swollen liver and spleen. We had been bounced

from rheumatologist to allergist to ophthalmologist, ENT, infectious

disease and hematology and oncology for all this time.

He was immediately put on methotrexate and prednisone. We saw

improvement after about 2 months, then changed from oral mtx. to

injections and that did the trick. He is now 8 1/2, completely off

prednisone for 4 months, looking and acting like a completely normal

kid.

I hope you get there quickly.

Stacia and Hunter 8 systemic, iritis

[Guest guest]

,

A little late here replying but try and help when I can.

My own son was 2 months shy of his 3rd b-day when he crashed his new bike.All

was fine except a reopened strawberry with blood running down his arm.Later

that night he complained about his ankle hurting and the next morning couldn't

stand up.His ankle was huge and he had some strange pale pink spots on the

inside of his lft thigh.Ped thought he sprained it and the rash was just contact

from the wet grass.All went well for about 5 days just like a sprained ankle

should.Then all of a sudden the fevers hit at night the rash was spreading and

not so pale pink and the wrist was involved.We were 2 days into the screaming

and crying all the time and getting worried,realy worried.

Within just a couple more days my son quit eating,drinking,walking and kept

screaming.He was put back in diapers and bottle fed and fed food just like a

baby.It took a few days to realise his hands were clawed up and still feal

guilty for not knowing.My son also suffered severe Myalgas so you couldn't even

comfort him.Any touch caused excrusiating pain.In this time frame we seen the

ped

about every other day and heard of Serum sickness,JRA,Lupas and Rheumatic

fever.SoJRA became the prime suspect very early on and on day 21 we carried our

son into the ped rheumy contracted in the fetal posistion burning up with

fever,major gland inflimation but luckily no organ involvement but covered from

head to toe in hives and welts.His labs were majorly off and a SED of 109 which

actualy measured his inflimation about a week after all problems started.Takes

a couple weeks for the SED to detect inflimation.

Started high doses of Prelone and 3 weeks later started

Methotreaxate.Eventualy maxed out on Ibuprofin and Methotreaxate .Added the max

amount of Plaquenil

and six months later added Enbrel.Low and behold a miricle happened.A huge

coctail for a 4 yr old but it worked.He spent 21 months on the pred and has been

off for 22 and complete control of symptoms ever since starting the Enbrel.

Think of it like this.At first it may take a whole army but when things are

under control it just takes a couple of soldiers.

Believe it or not you got the condenced version.

I just pray you get your son in complete control but know it will take

time.Just attack it with all your might now while it's still early.You can

always

taper and discontinue later.

Hugs

Becki and 6 systemic

[Guest guest]

Stacia,

Thanks, for the note. It's nice to know there's hope several years

from now.

>

> ,

>

> I am sorry to hear about the diagnosis, but we've all been there

and

> can help. The good news seems to be that you got a diagnosis very

> quickly. It may not seem like it to you, but some of us have gone

> months and years before diagnosis.

>

> My son started having problems when he was three and we got

> diagnosis of systemic onset JRA when he was 7 1/2. He couldn't

> walk, had all kinds of skin rashes, tummy and GI problems, fevers

on

> and off up to 106, swollen liver and spleen. We had been bounced

> from rheumatologist to allergist to ophthalmologist, ENT,

infectious

> disease and hematology and oncology for all this time.

>

> He was immediately put on methotrexate and prednisone. We saw

> improvement after about 2 months, then changed from oral mtx. to

> injections and that did the trick. He is now 8 1/2, completely

off

> prednisone for 4 months, looking and acting like a completely

normal

> kid.

>

> I hope you get there quickly.

>

> Stacia and Hunter 8 systemic, iritis

[Guest guest]

I'm new to this JRA group message chat and I wanted to ask a few

questions about my daughter's JRA hoping someone else's child has it

and can give me some insight to how they react to the meds.

was diagnosed with Sytsemic JRA and has taken Prednisone,

Sulfasalazine, Naproxen, Vioxx, Enalapril, Hydrochlorathyazide, Motrin,

Methotrexate, and Remicade. Several others but they were for only a

short time. I was wondering about side effects of these meds. She's had

nearly every one possible. I know all of the text-book effects that

come with the RXs but she is STILL always soooo tired and has trouble

moving around (getting up and being dizzy). The doctors say they don't

think these are side effects and that she is just clumsy and should get

more sleep. Really, she sleeps about 15 hours a day.

I guess I just want to talk with anyone who has similar circumstances.

I like the idea of this online support group.

Thanks so much!!!

Missy

[Guest guest]

Missy - how old is your daughter? What is medications is she taking right

now and the dosage. How often does she get lab work done? What are the level -

normal vs abnormal? With that info we might be able to give you more info.

Sandi, Ken Hunter (6 SYstemic)

[Guest guest]

hello missy

my name is Rosetta and my son dakota is systemic as

well. he was very tired as well in the begining from

meds to the disease and he even got very low iron so

the drs put him on iron drops and a multi vitamian .

it has helped a lot with some of his tiredness . he

was as well on a lot of meds in the begining but it

look like we might be on the right track . we havce

been able to get him off the steriods and hopefuly

soon get to start decreaseing his other meds . the

road is a long and scary one but having this grup has

been a life saver . it has taken a while to get to

were we are at in his treatment with many set back but

i just wanted to let you know keep your hipe up this

do get better and if you need anything just post here

or you can eamil me dirctly everyone here is great you

will met many new friends here

loves and hugs

rosetta and dakota (3 systemic)

--- katieandemilysmom <katieandemilysmom@...>

wrote:

>

>

> I'm new to this JRA group message chat and I wanted

> to ask a few

> questions about my daughter's JRA hoping someone

> else's child has it

> and can give me some insight to how they react to

> the meds.

>

> was diagnosed with Sytsemic JRA and has taken

> Prednisone,

> Sulfasalazine, Naproxen, Vioxx, Enalapril,

> Hydrochlorathyazide, Motrin,

> Methotrexate, and Remicade. Several others but they

> were for only a

> short time. I was wondering about side effects of

> these meds. She's had

> nearly every one possible. I know all of the

> text-book effects that

> come with the RXs but she is STILL always soooo

> tired and has trouble

> moving around (getting up and being dizzy). The

> doctors say they don't

> think these are side effects and that she is just

> clumsy and should get

> more sleep. Really, she sleeps about 15 hours a day.

>

>

> I guess I just want to talk with anyone who has

> similar circumstances.

> I like the idea of this online support group.

> Thanks so much!!!

> Missy

>

>

>

>

>

>

>

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[Guest guest]

Yikes, when doctorts talk that way it is mind boggling why they say such things!

Fatigue is a huge issue with chronic diseases. And the dizziness is a very

common side effect. When my daughter fell down the stairs and we went to the ped

since he is local, they ran all her meds through the computer and fatigue was a

red flag on all of them. Have her labs checked for problems. Remind her to

always sit up for a minute to get her bearings befor standing. If dizzy when

first stands, then stand for a minute or two then walk. Also dehydration can be

a real issue so drink plenty of fluids. Hope she is feeling better soon. My

daughter still has problems with dizziness and fatigue but these things do help

some.

e, mom to joe 18 poly

katieandemilysmom <katieandemilysmom@...> wrote:

I'm new to this JRA group message chat and I wanted to ask a few

questions about my daughter's JRA hoping someone else's child has it

and can give me some insight to how they react to the meds.

was diagnosed with Sytsemic JRA and has taken Prednisone,

Sulfasalazine, Naproxen, Vioxx, Enalapril, Hydrochlorathyazide, Motrin,

Methotrexate, and Remicade. Several others but they were for only a

short time. I was wondering about side effects of these meds. She's had

nearly every one possible. I know all of the text-book effects that

come with the RXs but she is STILL always soooo tired and has trouble

moving around (getting up and being dizzy). The doctors say they don't

think these are side effects and that she is just clumsy and should get

more sleep. Really, she sleeps about 15 hours a day.

I guess I just want to talk with anyone who has similar circumstances.

I like the idea of this online support group.

Thanks so much!!!

Missy

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

[Guest guest]

Hi Osh,I agree with everything that Helen told you.  Yes, it can be scary at first.  Methotrexate has also really helped our daughter, n.  She was 10 when she was diagnosed.  She has been on several medications, but methotrexate has worked the best for her.  Mtx takes time to work.  It can take 6-8 weeks so don't get discouraged.  Your granddaughter can live a very full, rich life.  We are in our 9th year with the disease, and n has never been in remission.  She skis, snowboards, was on the high school track team, and is now a freshman in college in another state.  Life isn't perfect, but a lot has been learned in just the 9 years that n has had the disease.  I do believe it is best to be aggressive with the disease.  It is like a fire, and it needs to be put out.  Good luck,   (n, 19, systemic)On Apr 24, 2008, at 6:34 PM, oshkanawa wrote:thank you, thank you, thank you.... what a relief to have some responses... yes, an aggressive treatment does make sense to me - i've got health issues myself and know it makes sense...but guess i needed to be "told".  fear out rules common sense sometimes - and i'm so terrified that i can't think.  (if it's my health...that's one thing...but i'm old ~ she's only 12, ya know?)(and her mom is a single mom unable to spend time "researching" and "asking".) yes, she's fortunate enough to have a pediatric rheumy...i've learned that it's a luxury via the internet.  geez, her white blood count hit 51,000 - and i thought i was gonna die ....just from the stress of hearing about it. i just can't wrap my mind around this.  i'm brain numb all over. sincerely,~osh  carneyvalaol wrote:Hello and welcome to the group.  As many have said, it always is so disheartening to welcome someone here - becasue it means that another child is suffering, but it is good that you found this site - this is an awesome group that possesses a wealth of experience and knowledge along with kindness and understanding that I haven't found anywhere else.I am so sorry to hear of your granddaughter's diagnosis. I don't know of any one website that will give step by step guidelines on which meds to use in what order to treat any type of arthritis, because different physicians will probably have different opinions.  There are very distinct symptoms as well as clinical findings that go along with each type of JRA, but there are also those children whose symptoms vary just enough to keep the docs guessing.  As you have probably already seen, reaching this diagnosis itself can be quite a journey of testing and determining what it isn't.  A good source of information would be the Arthritis Foundation at www.arthritis.org.Naproxen is an NSAID a Non-steroidal anti-inflammatory drug.  Methotrexate is a DMARD, a Disease-modifying antirheumatic drug.  It is not likely that an NSAID alone will be effective in controlling the systemic symptoms of your granddaughter's JRA.  Using a DMARD can help control the symptoms/inflammation as well as slow down teh progression of joint damage.  With this said, I am certainly not a physician and can only share what knowledge I have gained through my experiences dealing with this disease with my son, and from my own personal research and from those here on the list. Everything I have read has indicated that aggressive early treatment of this disease results in the best outcome.  It is my opinion that typically with Systemic Onset JRA that an NSAID alone may not be the most aggressive treatment.  However, I don't know what your granddaugther's symptoms are, nor her history, so I would hesitate to say more. My first questions would be what physicians are recommending which treatment and has she been seen by a Pediatric Rheumatologist? My son was diagnosed at age 4, 6 years ago with Systemic Onset JRA.  The first few years were quite rough - he was treated with steriods and another DMARD, cyclosporine.  He was very ill at onset, and it took some time to determine what was making his so very ill.  He was hospitalized many times and flared frequently when we would try to wean him from the steriods.  I fought to add another DMARD to try to stop the horrible cycle of steriod dosage and finally went to another doctor to get them to prescribe Methotrexate.  Methotrexate isn't necessarily the medication of choice for Systemic onset - but it is typically the 1st to try.  In my son's case, it seemed to be the right choice, as he has done very well since we started the medication over two years ago. I hope this has been of some help - please feel free to ask me any specific questions that you may have. I wish the best for your granddaughter.ValRob's Mom (10,systemic) systemic JRAhello ~ i'm a new member. my 12 yr old granddaughter just diagnosed two mths ago with systemic JRA. they found a minor heart anamoly that they say she could have been born with or it could be the rhuematic fever that they also discovered.my questions - as i'm sure everyone's was at this point - 1. is there a website that will advise step by step which medications should be tried before others?2. can you recommend a good website for "kids only" to discuss their issues - that specifically doesn't "deal with" the scary adult stuff that we're all discussing here?3. did anyone get a second opinion before putting their child on methorextate - and did the second opinion differ from the first?we had one doc say "put her on methorextate" but another doc said she should take Naproxen daily. this was all in the same week. it seems to me that until we find out if the Naproxen can control the inflammation - we shouldn't even think about methorextate...unless of course, the RA is damaging her heart and they've not told us that it is. (i'm just the grandma and get all the news second hand.) ~sighany help would be appreciated so very much.~osh Plan your next roadtrip with MapQuest.com: America's #1 Mapping Site.

[Guest guest]

wow...thanks. i will tell holly that she didn't need to sell her bike! we will get her a new one. (she told me she sold it because her knees can't take it anymore) thank you for the hope and inspiration. i'll continue it with my family. ~osh Price <bc.price@...> wrote: Hi Osh, I agree with everything that Helen told you. Yes, it can be scary at first. Methotrexate has also really helped our daughter, n. She was 10 when she was diagnosed. She has been on several medications, but methotrexate has worked the best for her. Mtx takes time to work. It can take 6-8 weeks so don't get

discouraged. Your granddaughter can live a very full, rich life. We are in our 9th year with the disease, and n has never been in remission. She skis, snowboards, was on the high school track team, and is now a freshman in college in another state. Life isn't perfect, but a lot has been learned in just the 9 years that n has had the disease. I do believe it is best to be aggressive with the disease. It is like a fire, and it needs to be put out. Good luck, (n, 19, systemic) On Apr 24, 2008, at 6:34 PM, oshkanawa wrote: thank you, thank you, thank you.... what a relief to have some responses... yes, an aggressive treatment does make sense to me - i've got health issues myself and know it makes sense...but guess i needed to be "told". fear out rules common sense sometimes - and i'm so terrified that i can't think. (if it's my health...that's one thing...but i'm old ~ she's only 12, ya know?)(and her mom is a single mom unable to spend time "researching" and "asking".) yes, she's fortunate enough to have a pediatric rheumy...i've learned that it's a luxury via the

internet. geez, her white blood count hit 51,000 - and i thought i was gonna die ....just from the stress of hearing about it. i just can't wrap my mind around this. i'm brain numb all over. sincerely, ~osh carneyvalaol wrote: Hello and welcome to the group. As many have said, it always is so disheartening to welcome someone here - becasue it means that another child is suffering, but it is good that you found this site - this is an awesome group that possesses a wealth of experience and knowledge along with kindness and understanding that I haven't found anywhere else.I am so sorry to hear of your granddaughter's diagnosis. I don't know of any one website that will give

step by step guidelines on which meds to use in what order to treat any type of arthritis, because different physicians will probably have different opinions. There are very distinct symptoms as well as clinical findings that go along with each type of JRA, but there are also those children whose symptoms vary just enough to keep the docs guessing. As you have probably already seen, reaching this diagnosis itself can be quite a journey of testing and determining what it isn't. A good source of information would be the Arthritis Foundation at www.arthritis.org.Naproxen is an NSAID a Non-steroidal anti-inflammatory drug. Methotrexate is a DMARD, a Disease-modifying antirheumatic drug. It is not likely that an NSAID alone will be effective in controlling the systemic

symptoms of your granddaughter's JRA. Using a DMARD can help control the symptoms/inflammation as well as slow down teh progression of joint damage. With this said, I am certainly not a physician and can only share what knowledge I have gained through my experiences dealing with this disease with my son, and from my own personal research and from those here on the list. Everything I have read has indicated that aggressive early treatment of this disease results in the best outcome. It is my opinion that typically with Systemic Onset JRA that an NSAID alone may not be the most aggressive treatment. However, I don't know what your granddaugther's symptoms are, nor her history, so I would hesitate to say more. My first questions would be what physicians are recommending which treatment and has she been seen by a Pediatric Rheumatologist? My son was diagnosed at age 4, 6 years ago with Systemic Onset JRA. The first few years were quite rough - he was treated with steriods and another DMARD, cyclosporine. He was very ill at onset, and it took some time to determine what was making his so very ill. He was hospitalized many times and flared frequently when we would try to wean him from the steriods. I fought to add another DMARD to try to stop the horrible cycle of steriod dosage and finally went to another doctor to get them to prescribe Methotrexate. Methotrexate isn't necessarily the medication of choice for Systemic onset - but it is typically the 1st to try. In my son's case, it seemed to be the right choice, as he has done very

well since we started the medication over two years ago. I hope this has been of some help - please feel free to ask me any specific questions that you may have. I wish the best for your granddaughter.ValRob's Mom (10,systemic) systemic JRA hello ~ i'm a new member. my 12 yr old granddaughter just diagnosed two mths ago with systemic JRA. they found a minor heart anamoly that they say she could have been born with or it could be the rhuematic fever that they also discovered.my questions - as i'm sure everyone's was at this point - 1. is there a website that will advise step by step which medications should be tried before others?2. can you recommend a good website for "kids only" to discuss their issues - that specifically doesn't "deal with" the scary adult stuff that we're all discussing here?3. did anyone get a second opinion before putting their child on methorextate - and did the second opinion differ from the first?we had one doc say "put her on methorextate" but another doc said she should take Naproxen daily. this was all in the same week. it seems to me that until we find out if the Naproxen can control the inflammation - we shouldn't even think about methorextate...unless of course, the RA is damaging her heart and they've not told us that it is. (i'm just the grandma and get all the news second hand.) ~sighany help would be appreciated so very much.~osh Plan your next roadtrip with MapQuest.com: America's #1 Mapping Site.

[Guest guest]

Osh, that is what we are all here for, to help each other out. We didn't get a second opinion before starting the mtx. We just trusted our doctor and knew that she needed something else to help her out. She had 12 joints effected at the time, so we were pretty much willing to try anything. It was very hard hearing that my 4 yr old had JRA, but it has made us stronger in the end. She is 9 now, and is active as can be. She overcame a lot of obstacles along the way. She tried to play sports growing up, but always had pain. It is just now, that she is pain free and willing to play sports again. She finally told me

that she didn't want to play basketball last year, because last time she played, she had to sit out a lot, due to some back pains. We were on MTX for years, and it did wonders for us......Every time we move (were military) and see a new doctor, we think, Gosh that person was so much better then the last. But being military we are only allowed to see certain doctors and can't really get a second opinion. One thing we didn't know about till last year, was as your granddaughter grows, the dose of her meds need to change. It makes sense now, but having her on the same dose of mtx for years seemed like the right thing to do, according to the doc. The last doc we seen, said oh no, she has grown so much that she is still on a small child dose....We still take mtx but no longer take it with the naproxen. We take it with Enbrel shots (2X a week). Our doc explained that this was the next step

for us, since she was still having problems with the mtx.

This doctor noticed a difference in her leg legths as well. My daughter has had back pains for years, and no one ever knew why.....just said it was bad posture, or something...but it wasn't related to jra. Come to find out, she has 1 inch longer in her right leg! We went to the podiatrist and he recommended a shoe insert. We got that a few months back, and have had no problems since.

In the end, I think I would listen to the doctor, and get an agressive start on her treatment. They are deciding her meds with your granddaughter's best interest in mind. Like someone else said, it does take 6-8 weeks to work....and they do have to check her blood often, to make sure it isn't effecting her liver. My daughter has hers done once a month now.

I hope you find the best meds for your grandaughter and that she gets started on her teatment quickly, to get some relief from the pain.

Helen

systemic JRA

hello ~ i'm a new member. my 12 yr old granddaughter just diagnosed two mths ago with systemic JRA. they found a minor heart anamoly that they say she could have been born with or it could be the rhuematic fever that they also discovered.my questions - as i'm sure everyone's was at this point - 1. is there a website that will advise step by step which medications should be tried before others?2. can you recommend a good website for "kids only" to discuss their issues - that specifically doesn't "deal with" the scary adult stuff that we're all discussing here?3. did anyone get a second opinion before putting their child on methorextate - and did the second opinion differ from the first?we had one doc say "put her on methorextate" but another doc said she should take Naproxen daily. this was all in the same week. it seems to me that until we find out if the Naproxen can control the

inflammation - we shouldn't even think about methorextate. ..unless of course, the RA is damaging her heart and they've not told us that it is. (i'm just the grandma and get all the news second hand.) ~sighany help would be appreciated so very much.~osh

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[Guest guest]

Hi Osh,

You are welcome. Yes, we do look at things differently when it's a child's health vs our own. I too am a single mom, as are many here. Your granddaughter's mother will more than likely find the time for research - as we all do - once getting over the initial shock her daughter's illness. There are resources out there, some good books and the Arthritis Foundation has many free pamphlets that can be ordered online (some specifically about arthritis in children). There is one I get for my son's teachers every year titled "When Your Student Has Arthritis"

Val

Rob's Mom (10,systemic)

systemic JRA

hello ~ i'm a new member. my 12 yr old granddaughter just diagnosed

two mths ago with systemic JRA. they found a minor heart anamoly

that they say she could have been born with or it could be the

rhuematic fever that they also discovered.

my questions - as i'm sure everyone's was at this point -

1. is there a website that will advise step by step which

medications should be tried before others?

2. can you recommend a good website for "kids only" to discuss their

issues - that specifically doesn't "deal with" the scary adult stuff

that we're all discussing here?

3. did anyone get a second opinion before putting their child on

methorextate - and did the second opinion differ from the first?

we had one doc say "put her on methorextate" but another doc said she

should take Naproxen daily. this was all in the same week. it seems

to me that until we find out if the Naproxen can control the

inflammation - we shouldn't even think about methorextate...unless of

course, the RA is damaging her heart and they've not told us that it

is. (i'm just the grandma and get all the news second hand.) ~sigh

any help would be appreciated so very much.

~osh

Plan your next roadtrip with MapQuest.com: America's #1 Mapping Site.

Plan your next roadtrip with MapQuest.com: America's #1 Mapping Site.

[Guest guest]

Hi Helen,

I don't mean to butt in here - but I wanted to let you know that second opinions are obtainable in military medicine. I was a hospital corpsman in the Navy for 20 years, and worked as a civilian at a military hospital for five years after leaving the military. It isn't always simple - just as it isn't when getting them approved through other insurance plans - but you can arrange them through TRICARE. If you need assistance within the military facility, they all have a Patient Representative offices than can provide assistance. With that said, there may be times when the specialty you are looking for the second opinion with isn't available within the military system, and you may need to go outside - but with TRICARE there are many civilian providers in the "system:". Of course, there are areas where all specialties aren't available in the civilian sector - but even then travel can be arranged to see someone outside your geographical area (though that would more than likely result in some out of pocket expense). This, of course would be more difficult when stationed overseas, but even then it can be arranged. Just wanted to let you know - many people are under the impression that you can't get a second opinion in the military medicine system.

Val

Rob's Mom (10, systemic)

Re: systemic JRA

Osh, that is what we are all here for, to help each other out. We didn't get a second opinion before starting the mtx. We just trusted our doctor and knew that she needed something else to help her out. She had 12 joints effected at the time, so we were pretty much willing to try anything. It was very hard hearing that my 4 yr old had JRA, but it has made us stronger in the end. She is 9 now, and is active as can be. She overcame a lot of obstacles along the way. She tried to play sports growing up, but always had pain. It is just now, that she is pain free and willing to play sports again. She finally told me that she didn't want to play basketball last year, because last time she played, she had to sit out a lot, due to some back pains. We were on MTX for years, and it did wonders for us......Every time we move (were military) and see a new doctor, we think, Gosh that person was so much better then the last. But being military we are only allowed to see certain doctors and can't really get a second opinion. One thing we didn't know about till last year, was as your granddaughter grows, the dose of her meds need to change. It makes sense now, but having her on the same dose of mtx for years seemed like the right thing to do, according to the doc. The last doc we seen, said oh no, she has grown so much that she is still on a small child dose....We still take mtx but no longer take it with the naproxen. We take it with Enbrel shots (2X a week). Our doc explained that this was the next step for us, since she was still having problems with the mtx.

This doctor noticed a difference in her leg legths as well. My daughter has had back pains for years, and no one ever knew why.....just said it was bad posture, or something...but it wasn't related to jra. Come to find out, she has 1 inch longer in her right leg! We went to the podiatrist and he recommended a shoe insert. We got that a few months back, and have had no problems since.

In the end, I think I would listen to the doctor, and get an agressive start on her treatment. They are deciding her meds with your granddaughter's best interest in mind. Like someone else said, it does take 6-8 weeks to work....and they do have to check her blood often, to make sure it isn't effecting her liver. My daughter has hers done once a month now.

I hope you find the best meds for your grandaughter and that she gets started on her teatment quickly, to get some relief from the pain.

Helen

systemic JRA

hello ~ i'm a new member. my 12 yr old granddaughter just diagnosed

two mths ago with systemic JRA. they found a minor heart anamoly

that they say she could have been born with or it could be the

rhuematic fever that they also discovered.

my questions - as i'm sure everyone's was at this point -

1. is there a website that will advise step by step which

medications should be tried before others?

2. can you recommend a good website for "kids only" to discuss their

issues - that specifically doesn't "deal with" the scary adult stuff

that we're all discussing here?

3. did anyone get a second opinion before putting their child on

methorextate - and did the second opinion differ from the first?

we had one doc say "put her on methorextate" but another doc said she

should take Naproxen daily. this was all in the same week. it seems

to me that until we find out if the Naproxen can control the

inflammation - we shouldn't even think about methorextate. ..unless of

course, the RA is damaging her heart and they've not told us that it

is. (i'm just the grandma and get all the news second hand.) ~sigh

any help would be appreciated so very much.

~osh

Be a better friend, newshound, and know-it-all with Mobile. Try it now.

Be a better friend, newshound, and know-it-all with Mobile. Try it now.

Plan your next roadtrip with MapQuest.com: America's #1 Mapping Site.

[Guest guest]

Thanks for the info Val. I didn't know that you were allowed to get that second opinion. I don't feel that we have needed it so far, but it is good to know for future. We have seen several civilian doctors for this, and some military docs as well. Over all, we have been satisfied with the doc's.

Helen

systemic JRA

hello ~ i'm a new member. my 12 yr old granddaughter just diagnosed two mths ago with systemic JRA. they found a minor heart anamoly that they say she could have been born with or it could be the rhuematic fever that they also discovered.my questions - as i'm sure everyone's was at this point - 1. is there a website that will advise step by step which medications should be tried before others?2. can you recommend a good website for "kids only" to discuss their issues - that specifically doesn't "deal with" the scary adult stuff that we're all discussing here?3. did anyone get a second opinion before putting their child on methorextate - and did the second opinion differ from the first?we had one doc say "put her on methorextate" but another doc said she should take Naproxen daily. this was all in the same week. it seems to me that until we find out if the Naproxen can control the

inflammation - we shouldn't even think about methorextate. ..unless of course, the RA is damaging her heart and they've not told us that it is. (i'm just the grandma and get all the news second hand.) ~sighany help would be appreciated so very much.~osh

Be a better friend, newshound, and know-it-all with Mobile. Try it now.

Be a better friend, newshound, and know-it-all with Mobile. Try it now.

Plan your next roadtrip with MapQuest.com: America's #1 Mapping Site.

Be a better friend, newshound, and know-it-all with Mobile. Try it now.

[Guest guest]

oh wow! what an awesome idea!! the school is treating my daughter like she's a criminal because her daughter isn't able to attend school. it was only after i told my daughter that by state law....if Holly can't go to school - then it's the school's responsibility to bring "school" home to Holly - that they finally shut up!! ~we are hoping that once the condition is under control....that Holly will be able to go back to school - and i'll make SURE her teachers have this pamphlet!! thank you so MUCH! Holly has been in "gifted" classes for six years...she's not a slumper! ya know??? i'm so glad i came here. thank you all so much. ~osh carneyval@...

wrote: Hi Osh, You are welcome. Yes, we do look at things differently when it's a child's health vs our own. I too am a single mom, as are many here. Your granddaughter's mother will more than likely find the time for research - as we all do - once getting over the initial shock her daughter's illness. There are resources out there, some good books and the

Arthritis Foundation has many free pamphlets that can be ordered online (some specifically about arthritis in children). There is one I get for my son's teachers every year titled "When Your Student Has Arthritis"ValRob's Mom (10,systemic)

systemic JRA hello ~ i'm a new member. my 12 yr old granddaughter just diagnosed two mths ago with systemic JRA. they found a minor heart anamoly that they say she could have been born with or it could be the rhuematic fever that they also discovered.my questions - as i'm sure everyone's was at this point - 1. is there a website that will advise step by step which medications should be tried before others?2. can you recommend a good website for "kids only" to discuss their issues - that specifically doesn't "deal with" the scary adult stuff that we're all discussing here?3. did anyone get a second opinion before putting their child on methorextate - and did the second opinion differ from the first?we had one doc say "put her on methorextate" but another doc said she should

take Naproxen daily. this was all in the same week. it seems to me that until we find out if the Naproxen can control the inflammation - we shouldn't even think about methorextate...unless of course, the RA is damaging her heart and they've not told us that it is. (i'm just the grandma and get all the news second hand.) ~sighany help would be appreciated so very much.~osh Plan your next roadtrip with MapQuest.com: America's #1 Mapping Site. Plan your next roadtrip with MapQuest.com: America's #1 Mapping Site.

[Guest guest]

it's great that the doctors found out about the different leg lengths so early in her life. my sister was 42 when she found out! it's actually extremely common...or so we were told. ~osh Helen Pense <hpense@...> wrote: This doctor noticed a difference in her leg legths as well. My daughter has had back pains for years, and no one ever knew

why.....just said it was bad posture, or something...but it wasn't related to jra. Come to find out, she has 1 inch longer in her right leg! We went to the podiatrist and he recommended a shoe insert. We got that a few months back, and have had no problems since.