Systemic JRA

[Guest guest]

Just jumping in quickly here – I agree

with everything that’s been posted about MTX. It was a great drug for my

son. Once it kicked in he was able to run again. I did want to clarify one

thing though – JRA is a different disease than RA. The JRA does not

become RA once the child is an adult. They are different. Many drs are now

beginning to use JIA – juvenile idiopathic arthritis – to better

differentiate between them. When researching, it helps to find info for JRA/JIA

rather than applying what you read about RA to a child’s situation.

One other suggestion I have is to have

your granddaughter’s eyes examined. There is a form of arthritis that can

affect the eyes – uveitis. It can only be detected by doing a slit lamp

test. The highest incidence is with girls who have pauci jra, but it can happen

to anyone with a form of the disease. Not sure if your dr mentioned about it,

but it is something that should be checked out. If the eyes are clear, the dr

will probably check 2x a year and then eventually once a year. At least that is

how it has gone for my son.

Please let us know how she is doing and

definitely get that bike back! Good luck to you all, Michele ( 20,

spondy)

From: [mailto: ] On Behalf Of oshkanawa

Sent: Thursday, April 24, 2008

8:22 PM

Subject: Re: systemic JRA

god bless you for answering me,

helen. we are so lost...and afraid. i cannot even begin to

comprehend your journey discovering this in your " four year

old " ...but give many thanks to hear that she is doing so well at this

point. i've heard that methotrexate is the protocol for jra...but have

also read there are alternatives to try first. did you get a second

opinion before starting her on this? ~you seem very pleased with the

results of it. i'm so very confused....and thought it should only be

used if ra was life threatening. thank you for you words of inspiration

that it IS possible to give her a life back without comprimising her

longetivity. but, i must admit....i'm a believer of having a full

young life instead of a dreadful long one.

thank you.

~osh

Helen Pense

<hpense > wrote:

Welcome to the group Osh!

I am not much help to your questions, but in our case. My daughter has

polyarticular jra, and they started her on naproxen only at

first. That was our miracle drug at the time, she was

wheelchair bound when we first found out, as it hurt too bad to

walk. With the naproxen, she was up and out of the wheel chair and

walking again, with not too many compliants of pain. It did

help the swelling, but after some time the doctor added on methotrexate in

conjunction with the naproxen. that seemed to help her out

tremdendously. In our case, the naproxen took down the

swelling and gave her more mobility, where as the methotrexate gave her more

pain free days, and got her jra under control better. We are

now off of the naproxen and doing Enbrel shots and

methotrexate. she was diagnosed at age 4, and finally at age

9, we are in a " medical remission " . Meaning as long as

she takes her meds, she has no problems.

Metotrexate is once a week, and naproxen is daily, so the combo maybe

right for her. I know it helped my daughter for years!

I hope your granddaughter get her jra under control soon.

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.

[Guest guest]

Hi - I just have to say that I am really impressed by your

knowledge of Juvenile arthritis!!! I just recently learned the

major difference between osteo and Rheumatoid. I felt good knowing

and being able to explain that. Now I need to research the

difference between Jra and RA. (unless you can explain it briefly!)

Thanks for sharing your knowledge.

& Grant (11, PsA/Uveitis)

>

> Welcome to the group Osh! I am not much help to your

questions,

> but in our case. My daughter has polyarticular jra, and they

started

> her on naproxen only at first. That was our miracle drug at the

time,

> she was wheelchair bound when we first found out, as it hurt too

bad to

> walk. With the naproxen, she was up and out of the wheel chair

and

> walking again, with not too many compliants of pain. It did

help the

> swelling, but after some time the doctor added on methotrexate in

> conjunction with the naproxen. that seemed to help her out

> tremdendously. In our case, the naproxen took down the swelling

and

> gave her more mobility, where as the methotrexate gave her more

pain

> free days, and got her jra under control better. We are now off

of

> the naproxen and doing Enbrel shots and methotrexate. she was

> diagnosed at age 4, and finally at age 9, we are in a " medical

> remission " . Meaning as long as she takes her meds, she has no

> problems.

>

>

>

> Metotrexate is once a week, and naproxen is daily, so the

combo

> maybe right for her. I know it helped my daughter for years!

>

>

>

> I hope your granddaughter get her jra under control soon.

>

>

>

> 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.

>

<http://us.rd./evt=51733/*http:/mobile./;_ylt=Ahu06

i62

> sR8HDtDypao8Wcj9tAcJ>

>

[Guest guest]

Thanks but truly what I have learned

was for the most part learned through this list. The articles that have been

posted, the experiences everyone shares have taught me a lot. I have been

coming here for over 7 years, so there have been many chances to learn. I am

also a pack rat, so I have old articles that I have saved and do re-read from

time to time. It is interesting how treatments have changed over the short time

I have been here.

I was looking for an article or two

that might explain the differences, I can repost a few. Differences have to do

with remission possibilities, degree of organ involvement and the possibility

for growth problems that affect kids from what I have read. With so many

different types of rheumatic autoimmune diseases there are many possible

outcomes from treatment.

By sharing what I do know, I hope that

people might benefit. Believe me there are many here who have much knowledge,

its just who posts it first I guess! LOL

Michele ( 20, spondy)

From: [mailto: ] On Behalf Of toivonen4

Sent: Friday, April 25, 2008 10:57

AM

Subject: Re: systemic JRA

Hi - I just have to say that I am really

impressed by your

knowledge of Juvenile arthritis!!! I just recently learned the

major difference between osteo and Rheumatoid. I felt good knowing

and being able to explain that. Now I need to research the

difference between Jra and RA. (unless you can explain it briefly!)

Thanks for sharing your knowledge.

& Grant (11, PsA/Uveitis)

>

> Welcome to the group Osh!

I am not much help to your

questions,

> but in our case. My daughter has polyarticular jra, and they

started

> her on naproxen only at first. That was our miracle drug at the

time,

> she was wheelchair bound when we first found out, as it hurt too

bad to

> walk. With the naproxen, she was up and out of the wheel chair

and

> walking again, with not too many compliants of pain. It did

help the

> swelling, but after some time the doctor added on methotrexate in

> conjunction with the naproxen. that seemed to help her out

> tremdendously. In our case, the naproxen took down the swelling

and

> gave her more mobility, where as the methotrexate gave her more

pain

> free days, and got her jra under control better. We are now off

of

> the naproxen and doing Enbrel shots and methotrexate. she was

> diagnosed at age 4, and finally at age 9, we are in a " medical

> remission " . Meaning as long as she takes her meds, she has no

> problems.

>

>

>

> Metotrexate is once a week, and naproxen is daily, so the

combo

> maybe right for her. I know it helped my daughter for years!

>

>

>

> I hope your granddaughter get her jra under control soon.

>

>

>

> 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.

>

<http://us.rd./evt=51733/*http:/mobile./;_ylt=Ahu06

i62

> sR8HDtDypao8Wcj9tAcJ>

>

[Guest guest]

I only have a second, but your granddaughter has certain rights.  You may want to check into 504s.  It is a good idea to have one in place every year.   (n, 19, systemic)On Apr 25, 2008, at 7:21 AM, oshkanawa wrote: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. ~oshcarneyvalaol 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 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.Plan your next roadtrip with MapQuest.com: America's #1 Mapping Site.

[Guest guest]

thank you for your confirmation re: mtx treatments. thank you also for the heads up on the type of eye test she should have. i did find out that inflamm in the eyes can be asymptomatic...but did not know how many times per year they should be checked. so thank you so much for that too. ~osh"Tepper, Michele" <MTepper@...> wrote: Just jumping in quickly here – I agree with everything that’s been posted about MTX. It was a great drug for my son. Once it kicked in he was able to run again. I did want to clarify one thing though – JRA is a different disease than RA. The JRA does not become RA once the child is an adult. They are different. Many drs are now beginning to use JIA – juvenile idiopathic arthritis – to better differentiate between them. When researching, it helps to find info for JRA/JIA rather than applying what you read about RA to a child’s situation. One other suggestion I have is to have your

granddaughter’s eyes examined. There is a form of arthritis that can affect the eyes – uveitis. It can only be detected by doing a slit lamp test. The highest incidence is with girls who have pauci jra, but it can happen to anyone with a form of the disease. Not sure if your dr mentioned about it, but it is something that should be checked out. If the eyes are clear, the dr will probably check 2x a year and then eventually once a year. At least that is how it has gone for my son. Please let us know how she is doing and definitely get that bike back! Good luck to you all, Michele ( 20, spondy)

[Guest guest]

thank you - i'll google 504s!!! ~osh Price <bc.price@...> wrote: I only have a second, but your granddaughter has certain rights. You may want to check into 504s. It is a good idea to have one in place every year. (n, 19, systemic)