New to the Group

[Guest guest]

In a message dated 1/5/05 7:23:15 PM Central Daylight Time,

staciar@... writes:

> As far as meeting another JRA child, have you askekd your doctor to

> let all their other JRA patients know that you guys would like to

> talk? With the privacy issues, I'm sure the dos won't give you any

> names, but he can mention your name to them if you want.

>

>

Summer,

That reminds me.Early on our rheumy asked me if I would like another parent

to get in contact with me who has been where we were.Turned out her daughter

was 9 months younger then my son and lived less then 3 miles away.

As great as this list is it was nice to meet an actual person that knew what

I was going through.Turns out there are atleast 2 more children with JRA in my

city of 60,000 so it makes atleast 4.

Ask and you just might receive

Hugs

Becki and 6 systemic

[Guest guest]

Hi Summer,

I'm so glad you found this group. If you're like me, I wished I had

found it many years ago. Oh well, we move forward.

As far as meeting another JRA child, have you askekd your doctor to

let all their other JRA patients know that you guys would like to

talk? With the privacy issues, I'm sure the dos won't give you any

names, but he can mention your name to them if you want.

I agree with trying the AF, ask if there's a local support group.

Ask your doctor that also. There was nothing available through the

AF or docs or anywhere here when we got our diagnosis, so with the

help of our doctor, we got one going. I wrote a letter and

developed a little brochure and he mailed it to all his juvenile

patients. We have about 12 families that hook up every couple

months and it's really fun.

Anyway, it sound like you're in the right place here and we'll keep

helping. Oh yes, you must go tothe AJAO Conference next July.

You'll meet more families than you can talk to. It's wonderful.

Do you use EMLA cream to numb the injection site before the enbrel

and mtx shots and bloodwork? If not, it really does help reduce the

tears.

Stacia and Hunter 8 systemic, iritis

[Guest guest]

Stacia,

Thanks for the tip on the EMLA cream. Is it otc or prescription? We go to the

rhuemy on Fri, so I will ask about it. Everytime we go to the dr, I ask for

help in meeting another family. They always tell me that they will ask around

for me. I know that they are overwhelmed, so I try to be patient, and keep

asking! We are 80% sure that we will be able to go to Rhode Island in July. We

are really looking forward to it. I have two sons also who would benefit from

meeting other kids who have siblings struggling with JRA. I like your idea of

developing a letter and brochure.Hmmm, my little brain is clicking with

possibilities!

Summer-Gabi 7poly

staciar101 <staciar@...> wrote:

Hi Summer,

I'm so glad you found this group. If you're like me, I wished I had

found it many years ago. Oh well, we move forward.

As far as meeting another JRA child, have you askekd your doctor to

let all their other JRA patients know that you guys would like to

talk? With the privacy issues, I'm sure the dos won't give you any

names, but he can mention your name to them if you want.

I agree with trying the AF, ask if there's a local support group.

Ask your doctor that also. There was nothing available through the

AF or docs or anywhere here when we got our diagnosis, so with the

help of our doctor, we got one going. I wrote a letter and

developed a little brochure and he mailed it to all his juvenile

patients. We have about 12 families that hook up every couple

months and it's really fun.

Anyway, it sound like you're in the right place here and we'll keep

helping. Oh yes, you must go tothe AJAO Conference next July.

You'll meet more families than you can talk to. It's wonderful.

Do you use EMLA cream to numb the injection site before the enbrel

and mtx shots and bloodwork? If not, it really does help reduce the

tears.

Stacia and Hunter 8 systemic, iritis

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

[Guest guest]

Summer,

There was a time when Emla couldn't be bought because the FDA decided it had

to be in some sort of child proof tube.At the time there was no generic and we

had to have it compounded for us.Low and behold another company took the

oppurtunity and ran with it so YES it does come in generic form.Lucky Alia,we

pay

$15 for it but then again we have private insurance.

Becki and 6 systemic

PS)For shots or blood draws it says 1 hour but can be left on for 3 hours.We

usualy do the 2-3 hours and nothing is felt at all.

[Guest guest]

Hi Summer,

The EMLA cream is prescription and is the brand name. The generic

is prilocaine/lidocaine and you put a dab on the injection site 1 -

2 hours before injection. Everyone here knows that the enbrel and

mtx. medicine does not hurt when it enters your body, but the needle

prick does. (In contrast, meds like the biologic Kineret, the

medicine actually is quite painful as it enters the body). So if you

numb and get rid of the needle prick, other than the pressure of the

syringe, they really don't feel a thing. Their little brains may

still imagine things, but you can work through that over time and

with many distractions methods. Ours is to have him watch a

favorite TV program or video (which is a big treat round here) and

he's lost his brain to it and forgets the shot. Whatever it takes

to get through it!!!

Since you're seeing the rheumy tomorrow, be aggressive and ask for

his/her input on how you can connect with other patiens of

his/her!!!! It's really in their best interest to have more

psychologically healthy patients that aren't out there thinking

they're the only ones.....

Tell us more after the appt.

Stacia and Hunter 8 systemic, iritis

[Guest guest]

Stacia,

We went to the rhuemy on Friday. Gabi will be old enough for arthritis camp

this summer. Hopefully it won't fall around the same time as the conference in

Rhode Island, as we plan to attend. The doctor also referred her to talk to a

counselor about her depression over her jra. I did get the prescription for the

EMLA cream. Can't wait to try it! Overall the appointment went really well.

Thankfully they did not up her meds or add any! She did get sick when they drew

her blood. We had been in the car for 3 hours, and she gets worked up into such

a frenzy over having her blood taken,and well, she stood up after they drew her

blood and sat back down on my lap, and yep, puked all over me, her and

everywhere else! It was quite a stinky ride home!

Summer-Gabi 7 poly

staciar101 <staciar@...> wrote:

Hi Summer,

The EMLA cream is prescription and is the brand name. The generic

is prilocaine/lidocaine and you put a dab on the injection site 1 -

2 hours before injection. Everyone here knows that the enbrel and

mtx. medicine does not hurt when it enters your body, but the needle

prick does. (In contrast, meds like the biologic Kineret, the

medicine actually is quite painful as it enters the body). So if you

numb and get rid of the needle prick, other than the pressure of the

syringe, they really don't feel a thing. Their little brains may

still imagine things, but you can work through that over time and

with many distractions methods. Ours is to have him watch a

favorite TV program or video (which is a big treat round here) and

he's lost his brain to it and forgets the shot. Whatever it takes

to get through it!!!

Since you're seeing the rheumy tomorrow, be aggressive and ask for

his/her input on how you can connect with other patiens of

his/her!!!! It's really in their best interest to have more

psychologically healthy patients that aren't out there thinking

they're the only ones.....

Tell us more after the appt.

Stacia and Hunter 8 systemic, iritis

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

[Guest guest]

Welcome to the group. I myself am new also. I have found a great group of people

here and am so happy to have joined. I was diagnosed in April of 2003. Good Luck

to you.

hafwacked68 <haforbis@...> wrote:

I'd like to say hello to everyone and tell everyone here how much I

appreciate the presence of this group. I was diagnosed with Lyme

disease in June, 2004 after almost 9 years of suffering and

misdiagnosis and treatment. Since June I have been undergoing oral

antibiotic treatment, and at times, the cure has felt worse than the

disease, but I've stuck with it hoping that in the end, I'll be back

to my old, active, outgoing self.

I think I've been in denial about the disease, and I've been

fighting it tooth and nail, to my ultimate detriment. I've come to

realize in the past weeks that the stress and depression that come

from the inevitable setbacks only serve to make it worse. I am

coming to terms with the limitations imposed upon me by this

illness, and I am learning to take comfort in the increase in good

days and the lessening in duration of the bad days.

After reading a few dozen posts, I don't feel as if I am fighting

this alone anymore, and that, by itself, has lifted my spirits more

than any drug possibly can. So, thank you all, and I'm glad to be a

member.

[Guest guest]

Rusty--

How old were you when first diagnosed? We were told that Brad could

possibly outgrow the JRA--I guess you never outgrew it. He will

always have eye issues. What kind of pain are you in today? Are you

currently on any eye drops? Brad is on Lotemax in the inflammation

free eye--inflammation has touched that eye, but with treatment it

went away. They keep him on the lotemax as a preventative measure.

Brad's inflammation was thought to be a cold in his eye before he

was taken to a specialist. He has only been inflammation free at

two doctors appointments. As you know, with inflammation in the eye

you see the eye doctor sometimes weekly checking pressures. After

both his surgeries in November he experienced a eye infection

causing scarring to the eye--the doctors want his eye to sit still a

couple of months before they do the laser surgery again to clean the

len. His Ped Opt. just fitted him for glasses--I like the glasses

because it helps protect the good eye. He is currently on Pre-forte

in the bad eye but he still has inflammation in that eye. How bad

was your eye when first diagnosed? His was pretty bad. How long

have you been inflammation free? How often do you visit the eye

doctor? So things do get better one day--Can't wait. Brad has

GREAT doctors and I know he is in the best possible care. Thanks--

Talk to you soon! Chris

>

> welcome and my heart felt hugs to that young fella of

yours! I am

> known as Rusty or Uncle Rusty to some, i have been living with jra

for 37

> years now come this July. I first started with eye inflamation,

thought

> to be possibly pink eye at the time. But as things progressed it

was to

> be diagnosed as iritis-uvitis. I too suffered the onset of

cateracts, but

> lukly, (knock on wood) no glacoma. to your question whether the

> inflamation goes away/ I am inflamation free at this time and

opefully

> will continue to be. I even recieved lens inplants one year ago, no

> longer do i wear those thick heavy cateract glasses.

> I will keep young Bradley in my thoughts and prayers!

> hplta

> Rusty O'Limbs

[Guest guest]

welcome and my heart felt hugs to that young fella of yours! I am

known as Rusty or Uncle Rusty to some, i have been living with jra for 37

years now come this July. I first started with eye inflamation, thought

to be possibly pink eye at the time. But as things progressed it was to

be diagnosed as iritis-uvitis. I too suffered the onset of cateracts, but

lukly, (knock on wood) no glacoma. to your question whether the

inflamation goes away/ I am inflamation free at this time and opefully

will continue to be. I even recieved lens inplants one year ago, no

longer do i wear those thick heavy cateract glasses.

I will keep young Bradley in my thoughts and prayers!

hplta

Rusty O'Limbs

[Guest guest]

Hi, Chris!

I just joined the group early last week. I've already learned a lot.

My son Logan was diagnosed with poly JRA 12/20/04 and I've about

recovered from the shock. Your post reminded me I need to have his

eyes checked. ARGH! Too much to remember. I think I need a

secretary just to keep my personal life straight!

Jerry-Logan 5 poly

>

>

> Dear Group:

>

> I am new to this group--Just joined on Friday. I have been reading

> all the posting. I am not new to this disease--My son has

> JRA/Pauciarticular. He was diagnosed in June 2002. My son's case

> is different from the norm--He was diagnosed through his eye with

> Uveitis that started in January 2002. He also has what we thought

> was a sprain--WRONG!! Since this time he was on steriod drops to

> reduce the inflammation in his eye; needless to say, the steriod

> drops caused increased eye pressure which triggered a cataract to

> form and Glaucoma. In February 2004 he had Glaucoma surgery. The

> surgery went good, but too much fluid was passing through the new

> drain flaring up an existing cataract. In August 2004 he had an

> artifical lens put into his eye. Bradley experiences some joint

> pain, and he is currently on MTX by injection once a week. Bradley

> still has inflammation in his eye. My question is: Is there anyone

> out there going through the inflammation in the eye? Does the

> inflammation ever go away? Has anyone else been through

> Glaucoma/Cataracts due to JRA and Steriod? I wonder if his eye will

> ever be inflammation free. Thanks and I look forward to be a member

> of this group--Thanks Chris

[Guest guest]

I am so sorry to hear of the continuously flaring eyes. My son has

iritis that flared once, to our knowledge. It was about this time

last year. He was on pred forte drops for about 6 months and it did

clear up. My son is systemicJRA, which is unusual for the eyes to

be affected.

There are others on this list with eye inflammation and I'm sure

they'll pipe in here soon. One boy, in particular, has had many eye

surgeries, bless his heart.

I hope you find the answers, help and support you need here.

Stacia and Hunter 8 systemic, iritis

[Guest guest]

Hi Chris. I am glad you found this group. It sounds like Bradley has gone

through a lot with his Uveitis. My daughter also has a bad case of Uveitis.

She is poly and ANA negative which is a rare combination for Uveitis. She

has been on Methotrexate for about a year and Oral Prednisone and Pred Forte

drops for about 13 months. We have gotten very lucky and so far no

cataracts, but I know it's a high possibility.

For Caroline, her inflammation has FINALLY gone away. Her last appointment

three weeks ago was the first time in a year she has had ZERO cells. We have

discontinued all her meds except Prednisone due to her having pneumonia and

we go in for a recheck this week. More than likely she will have flared back

up since she has never had no inflammation without her meds. In Caroline's

Uveitis history she has gone from a 1+ up to a 4+ and back down again. We

are hoping that she doesn't re-flare, but her ophthalmologist said that her

chances of re-flaring in the next two years are extremely high.

Hopefully, Deadre will chime in here. Her son Chase, has a severe case of

Uveitis and has had many many struggles. If you get the chance go to

Uveitis.org and join the parent discussion group there. The people in that

group are also great and a wonderful source of knowledge and advice on

Uveitis.

Good luck!

Alia and Caroline, age 3, poly and Uveitis

New to the Group

Dear Group:

I am new to this group--Just joined on Friday. I have been reading

all the posting. I am not new to this disease--My son has

JRA/Pauciarticular. He was diagnosed in June 2002. My son's case

is different from the norm--He was diagnosed through his eye with

Uveitis that started in January 2002. He also has what we thought

was a sprain--WRONG!! Since this time he was on steriod drops to

reduce the inflammation in his eye; needless to say, the steriod

drops caused increased eye pressure which triggered a cataract to

form and Glaucoma. In February 2004 he had Glaucoma surgery. The

surgery went good, but too much fluid was passing through the new

drain flaring up an existing cataract. In August 2004 he had an

artifical lens put into his eye. Bradley experiences some joint

pain, and he is currently on MTX by injection once a week. Bradley

still has inflammation in his eye. My question is: Is there anyone

out there going through the inflammation in the eye? Does the

inflammation ever go away? Has anyone else been through

Glaucoma/Cataracts due to JRA and Steriod? I wonder if his eye will

ever be inflammation free. Thanks and I look forward to be a member

of this group--Thanks Chris

_____

[Guest guest]

Dear Alia:

Bradley is ANA positive. How is Caroline's eye pressure? Bradley

had problems with his eye pressures almost as soon as he was

diagnosed. They even had to change him from Pre-forte to Lotemax

which helped some. Prior to the Glaucoma surgery he was on 4

different eye drops to try and control the pressure, but the drops

didn't help at all. Since his Glaucoma surgery he is just on the

Pre-forte drops 4 times a day. We just increased the Mtx in hopes

of getting the inflammation out of the eye. He has been at 1 cell

now for the past couple of months. It is a never ending battle once

it gets into the eye.

Anyways, I hope your daughter's eye exam goes well. Hopefully she

will still be inflammation free. I will check out that Uveitis

site. Thanks--Chris

> Hi Chris. I am glad you found this group. It sounds like Bradley

has gone

> through a lot with his Uveitis. My daughter also has a bad case of

Uveitis.

> She is poly and ANA negative which is a rare combination for

Uveitis. She

> has been on Methotrexate for about a year and Oral Prednisone and

Pred Forte

> drops for about 13 months. We have gotten very lucky and so far no

> cataracts, but I know it's a high possibility.

>

> For Caroline, her inflammation has FINALLY gone away. Her last

appointment

> three weeks ago was the first time in a year she has had ZERO

cells. We have

> discontinued all her meds except Prednisone due to her having

pneumonia and

> we go in for a recheck this week. More than likely she will have

flared back

> up since she has never had no inflammation without her meds. In

Caroline's

> Uveitis history she has gone from a 1+ up to a 4+ and back down

again. We

> are hoping that she doesn't re-flare, but her ophthalmologist said

that her

> chances of re-flaring in the next two years are extremely high.

>

> Hopefully, Deadre will chime in here. Her son Chase, has a severe

case of

> Uveitis and has had many many struggles. If you get the chance go

to

> Uveitis.org and join the parent discussion group there. The people

in that

> group are also great and a wonderful source of knowledge and

advice on

> Uveitis.

>

> Good luck!

>

> Alia and Caroline, age 3, poly and Uveitis

>

> New to the Group

>

>

>

>

> Dear Group:

>

> I am new to this group--Just joined on Friday. I have been

reading

> all the posting. I am not new to this disease--My son has

> JRA/Pauciarticular. He was diagnosed in June 2002. My son's case

> is different from the norm--He was diagnosed through his eye with

> Uveitis that started in January 2002. He also has what we thought

> was a sprain--WRONG!! Since this time he was on steriod drops to

> reduce the inflammation in his eye; needless to say, the steriod

> drops caused increased eye pressure which triggered a cataract to

> form and Glaucoma. In February 2004 he had Glaucoma surgery. The

> surgery went good, but too much fluid was passing through the new

> drain flaring up an existing cataract. In August 2004 he had an

> artifical lens put into his eye. Bradley experiences some joint

> pain, and he is currently on MTX by injection once a week. Bradley

> still has inflammation in his eye. My question is: Is there

anyone

> out there going through the inflammation in the eye? Does the

> inflammation ever go away? Has anyone else been through

> Glaucoma/Cataracts due to JRA and Steriod? I wonder if his eye

will

> ever be inflammation free. Thanks and I look forward to be a

member

> of this group--Thanks Chris

>

>

>

>

>

>

>

>

> _____

>

>

[Guest guest]

- Caroline's pressure has always been excellent. That is the one area

where we have lucked out. Caroline is currently on 15mg weekly of injectable

MTX, 2 ml daily of Prednisone, and Pred Forte drops 4 times a day. It seems

to be the combination that is working. We tried to go down to 3 drops a day

several times, but she always ended up flaring.

Thanks for the good thoughts, I am also keeping my fingers crossed!

Alia and Caroline, age 3, poly and uveitis

New to the Group

>

>

>

>

> Dear Group:

>

> I am new to this group--Just joined on Friday. I have been

reading

> all the posting. I am not new to this disease--My son has

> JRA/Pauciarticular. He was diagnosed in June 2002. My son's case

> is different from the norm--He was diagnosed through his eye with

> Uveitis that started in January 2002. He also has what we thought

> was a sprain--WRONG!! Since this time he was on steriod drops to

> reduce the inflammation in his eye; needless to say, the steriod

> drops caused increased eye pressure which triggered a cataract to

> form and Glaucoma. In February 2004 he had Glaucoma surgery. The

> surgery went good, but too much fluid was passing through the new

> drain flaring up an existing cataract. In August 2004 he had an

> artifical lens put into his eye. Bradley experiences some joint

> pain, and he is currently on MTX by injection once a week. Bradley

> still has inflammation in his eye. My question is: Is there

anyone

> out there going through the inflammation in the eye? Does the

> inflammation ever go away? Has anyone else been through

> Glaucoma/Cataracts due to JRA and Steriod? I wonder if his eye

will

> ever be inflammation free. Thanks and I look forward to be a

member

> of this group--Thanks Chris

>

>

>

>

>

>

>

>

> _____

>

>

[Guest guest]

Is Shane being seen by Dr. Sanborge? She is the best pediatric

rheumatologist! Lucille Packard is a great place to be treated. A lot of his

symptoms

seems like systemic. I hope that they are able to treat him and get him

feeling better all the time without the pred.. its not the best thing to be on

long term.

Lots of love

(poly JRA and Spondy, 20)

Belmont, CA (also treated at LPCH)

[Guest guest]

I actually have an appointment with her tomorrow (march 11th) she is an

amazing doctor and has been treating me since I was 15. She is so caring and

great! I don't know a single kid who presents a text book case of JRA. I've

never had a sed rate greater then 10, but I still have presented with swollen

stiff joints.. she knows JRA when she sees it. \

(poly JRa and Spondy, 20)

[Guest guest]

,

Thanks for responding so quickly. Yes, we saw Dr. Sandborg. She

was awesome! I feel very blessed that we were able to see her

today. I guess time will tell if Shane has systemic JRA. I

suspected this for awhile and she confirmed by suspensions.

God bless,

Beverly

> Is Shane being seen by Dr. Sanborge? She is the best pediatric

> rheumatologist! Lucille Packard is a great place to be treated.

A lot of his symptoms

> seems like systemic. I hope that they are able to treat him and

get him

> feeling better all the time without the pred.. its not the best

thing to be on

> long term.

>

> Lots of love

> (poly JRA and Spondy, 20)

> Belmont, CA (also treated at LPCH)

>

>

>

[Guest guest]

Beverely - we also see the rheumatologist at Stanford - both Dr.

Sandborg and Dr. Lee. My daughter has not received a diagnosis for

systemic JRA yet - but that is what they (and I) suspect. I think I

remember you from the group. My daughter was originally

diagnosed with as well - but after one of the fevers didn't go

away after a week, and it turned out her liver and spleen were

enlarged they started looking into other possibilities and systemic

JRA is at the top of the list.

I'm sorry I can't help you regarding the rash - my daughter doesn't

actually have a rash. But I think I remember someone on here

mentioning their child's rash does itch. I think is right about

no child fitting the " textbook " case of systemic JRA - it really

seems like each child is different.

Anyhow, my daughter is on naprosyn and prilosec (like tagamet) as

well and it has really helped. She was on prednisone after that bad

episode - but we were able to wean her off of it.

This group is VERY helpful - there is so much information to learn

about systemic JRA. I'm reading Dr. Lehman's book - " Its not just

growing pains " and I'm really learning a lot - it talks about each of

the available medications in detail - including side effects, typical

course of action, etc.

I hope your son is feeling better soon!

take care,

am

(mom to Layla, 19 months, possible systemic JRA)

> > Is Shane being seen by Dr. Sanborge? She is the best pediatric

> > rheumatologist! Lucille Packard is a great place to be treated.

> A lot of his symptoms

> > seems like systemic. I hope that they are able to treat him and

> get him

> > feeling better all the time without the pred.. its not the best

> thing to be on

> > long term.

> >

> > Lots of love

> > (poly JRA and Spondy, 20)

> > Belmont, CA (also treated at LPCH)

> >

> >

> >

[Guest guest]

It does sound like systemic, but I have another question. Have you taken him to

an eye dr for a slit lamp test? This is done to check for inflammation in the

eye - a form of arthritis called uveitis. It is not common in kids with

systemic, but it certainly is possible. I would question the rheumy about it and

get him to an eye dr to check. My son does not have it, but goes every 6 months

for the test, as kids with pauci are more prone to it. He used to go every 3

months but after about 1 year of being clear, he is able to stretch it to 6

months. Good luck with figuring out a diagnosis soon, Michele ( 17, pauci

& spondy)

New to the group

Hi everyone,

I recently joined this group a few months ago. I suspected he might

have JRA. My son, Shane was diagnosed today with JRA. Probably

systemic JRA. He gets very high fevers (105°F) every 6 to 8 weeks.

The fever would last for a week if we didn't give him a dose of

prednisone. We give him the prednisone when he is at his sickest

time (high fever, vomiting, joint pain)it kicks the illness out of

his body within hours. It's like he was never sick!!!

He was originally diagnosed with (periodic fever syndrome).

But last April, he started getting rashes. He also gets eye pain

periodically, along with pain in his legs and feet off and on

throughout the months and in-between the fevers.

When he was younger, he would be " healthy " in between his fever

episodes. But now, in between his fevers, his legs/feet hurt, he

has abdominal pain (complains almost everyday), and his eyes

periodically hurt. He tells me that they feel like they are on fire

and they are extremely sensitive to light. He still gets the high

fevers, but now he gets a rash (usually after the prednisone has

been given and the fever has stopped).

Does any of this sound familiar to you??? I still wonder if Shane,

who is 7 yrs old has systemic JRA. The doctor at Standford today

feels JRA is a closer and more accurate diagnosis than his original

diagnosis of .

He is to take Naprocin (sp?) twice a day, along with Tagamet for his

stomach.

I would really appreciate any feedback you may have.

Thanks a bunch!!!

Beverly

Roseville, CA

mom to Nick (10), Shane (7) systemic?, and Maddy (5)

[Guest guest]

Hi Beverly,

Welcome to our group. I saw that you mentioned that Shane has had a

lot of eye pain. My daughter is 9. She started having flares 2

years ago. She often complained of burning pain in her eyes and

would actually have to go to the nurses station and put cold

compresses on her eyes. (WE tried eye drops (patanol)but they didn't

make much difference)

Sometimes when she flares and other times for no reason she gets very

blood shot eyes. This often accompanies her rashes. We take her to

the opthamologist every 4 months and so far everything checks out good

there. They think that this is just another manifestation of the

" systemic " part of her disease.

Aundrea has been on Methotrexate for 9 weeks in addition to plaquenil.

She has had significant improvement in all her symptoms, except for

her rash.

I hope that things will improve for Shane. It would be nice if you

could get the disease under control so that you wouldnt have to always

resort to prednisone. We went thru two pred tapers this winter and

found that to be one of the most challenging meds to use. Great in

dealing with her pain, but horrible mood swings, weight gain etc...

Keep us posted as to how things are going for Shane.

God Bless,

(Aundrea 9 systemic)--

- In , " bdettis " <bdettis@s...> wrote:

>

> Hi everyone,

>

> I recently joined this group a few months ago. I suspected he might

> have JRA. My son, Shane was diagnosed today with JRA. Probably

> systemic JRA. He gets very high fevers (105°F) every 6 to 8 weeks.

> The fever would last for a week if we didn't give him a dose of

> prednisone. We give him the prednisone when he is at his sickest

> time (high fever, vomiting, joint pain)it kicks the illness out of

> his body within hours. It's like he was never sick!!!

>

> He was originally diagnosed with (periodic fever syndrome).

> But last April, he started getting rashes. He also gets eye pain

> periodically, along with pain in his legs and feet off and on

> throughout the months and in-between the fevers.

>

> When he was younger, he would be " healthy " in between his fever

> episodes. But now, in between his fevers, his legs/feet hurt, he

> has abdominal pain (complains almost everyday), and his eyes

> periodically hurt. He tells me that they feel like they are on fire

> and they are extremely sensitive to light. He still gets the high

> fevers, but now he gets a rash (usually after the prednisone has

> been given and the fever has stopped).

>

> Does any of this sound familiar to you??? I still wonder if Shane,

> who is 7 yrs old has systemic JRA. The doctor at Standford today

> feels JRA is a closer and more accurate diagnosis than his original

> diagnosis of .

>

> He is to take Naprocin (sp?) twice a day, along with Tagamet for his

> stomach.

>

> I would really appreciate any feedback you may have.

>

> Thanks a bunch!!!

>

> Beverly

> Roseville, CA

> mom to Nick (10), Shane (7) systemic?, and Maddy (5)

[Guest guest]

I have had JRA since I was around 6.. I started getting treatment for it

when I was 14 from sanborge.. and yeah the disease has changed a lot in the last

few years it will do that though. JRA is a strange disease..

Lots of Love

Spondy, 20

[Guest guest]

-HI,

Sure sounds like it could very well be systemic JRA. The rash CAN

itch. I heard of a few kids on the list here whos rash itches and I

remember in the very beggining Nicks did too, sometimes.

Hugs Helen and (7,systemic)

-- In , " bdettis " <bdettis@s...> wrote:

>

> Hi everyone,

>

> I recently joined this group a few months ago. I suspected he

might

> have JRA. My son, Shane was diagnosed today with JRA. Probably

> systemic JRA. He gets very high fevers (105°F) every 6 to 8

weeks.

> The fever would last for a week if we didn't give him a dose of

> prednisone. We give him the prednisone when he is at his sickest

> time (high fever, vomiting, joint pain)it kicks the illness out of

> his body within hours. It's like he was never sick!!!

>

> He was originally diagnosed with (periodic fever syndrome).

> But last April, he started getting rashes. He also gets eye pain

> periodically, along with pain in his legs and feet off and on

> throughout the months and in-between the fevers.

>

> When he was younger, he would be " healthy " in between his fever

> episodes. But now, in between his fevers, his legs/feet hurt, he

> has abdominal pain (complains almost everyday), and his eyes

> periodically hurt. He tells me that they feel like they are on

fire

> and they are extremely sensitive to light. He still gets the high

> fevers, but now he gets a rash (usually after the prednisone has

> been given and the fever has stopped).

>

> Does any of this sound familiar to you??? I still wonder if

Shane,

> who is 7 yrs old has systemic JRA. The doctor at Standford today

> feels JRA is a closer and more accurate diagnosis than his

original

> diagnosis of .

>

> He is to take Naprocin (sp?) twice a day, along with Tagamet for

his

> stomach.

>

> I would really appreciate any feedback you may have.

>

> Thanks a bunch!!!

>

> Beverly

> Roseville, CA

> mom to Nick (10), Shane (7) systemic?, and Maddy (5)

[Guest guest]

,

I was wondering how long have you have been diagnosed with JRA?

Have you had this since you were really little like Shane. Did you

symptoms change as you got older?

Good luck with Dr. Sandborg today. . . she's great!!!

Beverly

Mom to Shane (systemic, age 7)

> I actually have an appointment with her tomorrow (march 11th) she

is an

> amazing doctor and has been treating me since I was 15. She is so

caring and

> great! I don't know a single kid who presents a text book case of

JRA. I've

> never had a sed rate greater then 10, but I still have presented

with swollen

> stiff joints.. she knows JRA when she sees it. \

>

> (poly JRa and Spondy, 20)

>

>

>

[Guest guest]

Hi

I have had Shane's eyes check three times since last July. Last

July I took him in to have a routine check-up done. They dilated

his eyes and used a slit lamp. The doctor found a " rare cell " in

the anterior of his left eye. He told me that this did not look

like a typical 7 year olds eyes. Then I took him back in December

and January when Shane was complaining of eye pain and was

phototphobic. He did not dilated his eyes, but he said that his

eyes looked normal and nothing else was found. I was wondering if

his eyes have to be dilated to see any unusual things? Shane is

getting a second opinion next week. We are seeing a pediatric

opthamologist next week (the other doctor he saw see adults

primarily). I wonder is she will find anything?

Thanks for your reply.

Beverly

> It does sound like systemic, but I have another question. Have you

taken him to an eye dr for a slit lamp test? This is done to check

for inflammation in the eye - a form of arthritis called uveitis. It

is not common in kids with systemic, but it certainly is possible. I

would question the rheumy about it and get him to an eye dr to

check. My son does not have it, but goes every 6 months for the

test, as kids with pauci are more prone to it. He used to go every 3

months but after about 1 year of being clear, he is able to stretch

it to 6 months. Good luck with figuring out a diagnosis soon,

Michele ( 17, pauci & spondy)

>

> New to the group

>

>

>

> Hi everyone,

>

> I recently joined this group a few months ago. I suspected he

might

> have JRA. My son, Shane was diagnosed today with JRA. Probably

> systemic JRA. He gets very high fevers (105°F) every 6 to 8

weeks.

> The fever would last for a week if we didn't give him a dose of

> prednisone. We give him the prednisone when he is at his sickest

> time (high fever, vomiting, joint pain)it kicks the illness out of

> his body within hours. It's like he was never sick!!!

>

> He was originally diagnosed with (periodic fever syndrome).

> But last April, he started getting rashes. He also gets eye pain

> periodically, along with pain in his legs and feet off and on

> throughout the months and in-between the fevers.

>

> When he was younger, he would be " healthy " in between his fever

> episodes. But now, in between his fevers, his legs/feet hurt, he

> has abdominal pain (complains almost everyday), and his eyes

> periodically hurt. He tells me that they feel like they are on

fire

> and they are extremely sensitive to light. He still gets the high

> fevers, but now he gets a rash (usually after the prednisone has

> been given and the fever has stopped).

>

> Does any of this sound familiar to you??? I still wonder if

Shane,

> who is 7 yrs old has systemic JRA. The doctor at Standford today

> feels JRA is a closer and more accurate diagnosis than his

original

> diagnosis of .

>

> He is to take Naprocin (sp?) twice a day, along with Tagamet for

his

> stomach.

>

> I would really appreciate any feedback you may have.

>

> Thanks a bunch!!!

>

> Beverly

> Roseville, CA

> mom to Nick (10), Shane (7) systemic?, and Maddy (5)

>

>

>

>

>

>

>

>

[Guest guest]

Yes, you do need to dilate the eyes to see the possible inflammation, at least

according to my son's eye dr. I think it is a good idea to get that second

opinion just in case. Michele ( 17, pauci & spondy)

New to the group

>

>

>

> Hi everyone,

>

> I recently joined this group a few months ago. I suspected he

might

> have JRA. My son, Shane was diagnosed today with JRA. Probably

> systemic JRA. He gets very high fevers (105°F) every 6 to 8

weeks.

> The fever would last for a week if we didn't give him a dose of

> prednisone. We give him the prednisone when he is at his sickest

> time (high fever, vomiting, joint pain)it kicks the illness out of

> his body within hours. It's like he was never sick!!!

>

> He was originally diagnosed with (periodic fever syndrome).

> But last April, he started getting rashes. He also gets eye pain

> periodically, along with pain in his legs and feet off and on

> throughout the months and in-between the fevers.

>

> When he was younger, he would be " healthy " in between his fever

> episodes. But now, in between his fevers, his legs/feet hurt, he

> has abdominal pain (complains almost everyday), and his eyes

> periodically hurt. He tells me that they feel like they are on

fire

> and they are extremely sensitive to light. He still gets the high

> fevers, but now he gets a rash (usually after the prednisone has

> been given and the fever has stopped).

>

> Does any of this sound familiar to you??? I still wonder if

Shane,

> who is 7 yrs old has systemic JRA. The doctor at Standford today

> feels JRA is a closer and more accurate diagnosis than his

original

> diagnosis of .

>

> He is to take Naprocin (sp?) twice a day, along with Tagamet for

his

> stomach.

>

> I would really appreciate any feedback you may have.

>

> Thanks a bunch!!!

>

> Beverly

> Roseville, CA

> mom to Nick (10), Shane (7) systemic?, and Maddy (5)

>

>

>

>

>

>

>

>