Re: Robbie

[Guest guest]

Does Robbie have systemic onset JRA?

Enbrel seems to be less effective in the systemic cases.

It can't hurt to try it though. In people who respond to it, the effect is

quite substantial. (Search the archives at the web site for lots

of anecdotal discussion about Enbrel.)

In terms of stunting growth, maybe discuss with your doctor taking a larger

dose of prednisone every 2 or 3 days instead of the small dose every day.

Our son Elliot is only 5, but there are others in the group with older

children who may want to pen pal.

Good luck. Keep us posted.

Charlie

>From: JanaB41@...

> onelist

>Date: Tue, 19 Oct 1999 11:54:38 EDT

>From: JanaB41@...

>Hello,

>My name is Jana. I have a 12 year old son, Robbie, who has had JRA for

>more

>then

>4 years. He is doing pretty well.... plays soccer, basketball, baseball

>and

>every other sport possible.... but we still have issues and concerns.

>Robbie had Methotrexate injections for more then 2 years, but improved

>enough

>to go off of it. He most recently has been taking 5 mg of Prednisone a day

>and 400 mg of Clinoril a day. He has some stiffness and problems still

>with the

>Prednisone and Clinoril, including stomach pain. We replaced the Clinoril

>with Vioxx

>last week, which was a total disaster!! His doctors are now looking at

>trying

>Enbrel. Any feedback on this?

>I am concerned with Robbies growth. He weights 74 lbs, which has been

>about

>the same for a year and half. He is growing some, a little at a time... he

>is about 4'11 " .

>I worry about the Prednisone stunting his growth, but the specialist in

>Seattle does not believe this is the case. We live in Boise, so we have

>limited

>doctor support here locally. His local doctor says he thinks the small

>amount of

>Prednisone could be stunting his growth. Any comments?

>Lastly, Robbie would like to have an internet JRA friend to talk to. He

>doesn't not

>know anyone else with his problem, and feels isolated. Any sports loving

>boys

>in his age group out there?

>Thanks, Jana

[Guest guest]

Charlie,

Thank you for your response. Robbie does not have systemic onset JRA,

he has polyarticular. I have read most available information about Enbrel,

but look forward to reading the discussions, which I am sure will give me

more practical information. I will also talk to the doctor about your

Prednisone

suggestion.

Thanks again, Jana

[Guest guest]

Hi! Thanks for your feedback.... looks like we have a pair of thin 12 year

olds. We

live in Boise, Idaho which isn't great. There are no pediatric

rheumatologists here

and are down to 2 rheumatologists that see children. Not much choice. Robbie

has seen Dr. Carol Wallace from the Children's Hospital in Seattle.... the

rheumatologist here talks to her every 3 months... we are currently waiting

for Dr. Wallace to approve trying Enbrel... it is frustrating, we most likely

won't hear back from her until the end of the month.

Dr. Wallace is a prednisone advocate. I have heard that the specialists from

Salt Lake City are generally not prednisone advocates, maybe we should go

to SLC.

It sounds like many JRA kids may be thin, does anyone know the cause of this?

The disease itself vs the drugs. Most likely both.

My son does not want to try the Enbrel. He wants to take the NSD and

Prednisone

and wants everyone to leave him alone. He believes that the Prednisone is

the only thing that helps. When we tappered him to 3 mgs, he was a mess. He

started improving when we went back to 4mg, but he secretly increased himself

back to 5 mg... the joys of an almost teenager.

Thanks for listening, Jana

[Guest guest]

Charlie,

The Seattle doctors do not believe that the MTX worked well. He was on high

doses, had to stay on Prednisone, and still had inflamation. I am not sure I

really agree with this.... he did get much better over the 2 years he took

the

MTX. Did the MTX make him better or did he just get better? They do not

advise that he resume the MTX.

I think we will push to try Enbrel. We understand that the Prednisone won't

be decrease unless or until the Enbrel begins working. He has taken

Prednisone

for 4 1/2 years.... I think it is time to move on if we can. The doctor

here said

he would take care of the insurance letters.

As far as Robbie's fears, yes, it is part because of the shots. We thank you

for

your suggestions. It is also because he is " sick of being sick " and many

times

changes make him worse instead of better.

Thanks, Jana

[Guest guest]

Jana,

My daughter Mandy has had polyarticular JRA since she was 18 months old....

She is now 12. She is not on prednisone, but she is on Methotrexate,

Tolecton, and Plaquenil. They are non steroidal, and seem to be working.

Each day is a little different though. I think each doctor in different

areas, take a different approach. I am from Pennsylvania, where are you

from? I will try to help if I can, but you and your doctor, have to decide

what is best for your child. Good luck, Janet Moyer

[Guest guest]

Jana,

I think Mandy is just thin because her father is, and I am

somewhat..hehehe....I also think, because she is so active with her synchro

swimming, she does not gain weight, but it can't hurt to ask the Doctor. I

really haven't thought much about it. She could not hardly get out of bed,

about six months ago, so I am happy, she is able to swim again. My Doctor is

not ready to put her on Embrel, as he is worried about long term effects, as

Methotrexate has been around for about 20 years. Of course all of these

meds. have some sort of possible side effect, so I guess it is try, try

again, until the right thing works for your child. I even have a magnetic

mattress for her bed.....can't hurt, right? Take care, Janet

Re: [ ] Robbie

> From: JanaB41@...

>

> Hi! Thanks for your feedback.... looks like we have a pair of thin 12

year

> olds. We

> live in Boise, Idaho which isn't great. There are no pediatric

> rheumatologists here

> and are down to 2 rheumatologists that see children. Not much choice.

Robbie

> has seen Dr. Carol Wallace from the Children's Hospital in Seattle.... the

> rheumatologist here talks to her every 3 months... we are currently

waiting

> for Dr. Wallace to approve trying Enbrel... it is frustrating, we most

likely

> won't hear back from her until the end of the month.

>

> Dr. Wallace is a prednisone advocate. I have heard that the specialists

from

> Salt Lake City are generally not prednisone advocates, maybe we should go

> to SLC.

>

> It sounds like many JRA kids may be thin, does anyone know the cause of

this?

> The disease itself vs the drugs. Most likely both.

>

> My son does not want to try the Enbrel. He wants to take the NSD and

> Prednisone

> and wants everyone to leave him alone. He believes that the Prednisone is

> the only thing that helps. When we tappered him to 3 mgs, he was a mess.

He

> started improving when we went back to 4mg, but he secretly increased

himself

> back to 5 mg... the joys of an almost teenager.

>

> Thanks for listening, Jana

>

> > Visit my homepage for a list of sites with info on childhood arthritis:

> http://www.geocities.com/Heartland/Village/8414/

[Guest guest]

Hi Jana,

My son was always on the slim side. Still is, I guess, except that he's

been on somewhat high doses of daily steroids and it bloats him. Very

big cheeks, tummy, and waist. When the dose gets lower, he slims down

again. At around 12mgs of prednisone, he usually loses all signs of

being Cushingoid. I've noticed, too, that MANY kids with JRA are very

tall and slim. I don't know why that is.

I thought I was the only one who didn't have access close by to a

pediatric rheumatologist! There aren't any on the island of Maui,

either. We have to fly off island to Oahu to see them, if we need to, in

between the regular monthly appts when they fly over for JRA clinics :-)

I'm not sure that any doctors should be considered 'prednisone

advocates'. I think at this point they are all aware of the inherent

risks and side effects. I don't think they would choose to use it on a

regular, long term basis unless it was seen as being medically

necessary. Some kids respond better to the other meds and are able to

wean off steroids really quickly, if they even need them at all when

they first get sick. Some newly diagnosed kids are being started right

away on DMARDs and not even getting steroids, from what I've heard. For

some others, there seems no better med available. It definitely controls

the symptoms well and very quickly. But DMARDs are needed to affect the

course of illness, most times, because the arthritis will continue on in

the background even on steroid therapy, in a lot of cases. My son almost

died during the initial onset of JRA. His spleen, liver and heart and

many joints were affected. His extremely high fevers didn't respond to

ordinary measures (NSAIDs). He started taking MTX after one week in the

hospital but it wouldn't have worked quickly enough to save him. That's

why he got prednisone. So, while I hate that he hasn't been able to

discontinue it, I am very grateful to have at least one drug available

that definitely helps during the rare but very scary flare ups. Some

people do become steroid dependent. And he may become one of them. But

I've also heard stories of people who took steroids for many, many years

and were finally able to discontinue them when the arthritis went into

remission. I guess only time will tell. I like to try to stay

optimistic, though. Helps Josh not to get too discouraged.

Take care,

Georgina

[Guest guest]

Charlie S wrote:

>

> From: " Charlie S " <charles_c_s@...>

>

> The problem with a discussion group with non-doctors is that their opinions

> are not worth that much.

>

Hi Charlie,

What?!? Sometimes a parent's opinions are even better than a doctor's!!!

:-) We spend so much more time with our kids than the doctors ever do

and we know them so much better! In the very beginning, each time we'd

have an appt with the pediatrician I'd be telling the doctor about all

the strange symptoms but it took a while for them to understand because

often by the time we got in there, the rash had disappeared, the fevers

were down and the joints were more loose. They weren't seeing what we

were seeing at home, fully, until Josh was in the hospital. No. I know

what you mean :-) But I think parent's opinions, and talking in layman's

words, is worth lots!! We have an easy sense of camaraderie among us

that takes a very long time to build up with a doctor. I think we can

learn a lot from one another and that our discussions here can be a

great starting point for coming up with topics to discuss further and in

more detail, at our appts. with qualified medical professionals.

Take care,

Georgina

[Guest guest]

In a message dated 10/19/99 10:28:20 PM Pacific Daylight Time, gmckin@...

writes:

<< I'm not sure that any doctors should be considered 'prednisone

advocates'. I think at this point they are all aware of the inherent

risks and side effects. I don't think they would choose to use it on a

regular, long term basis unless it was seen as being medically

necessary. >>

My doctor has always used prednisone as the answer to any problem I was

having. To the point where I started not reporting problems because I knew

the solution would be " Well, let's try upping your prednisone to 40 mg a day

for a few days, and see what happens. " A few days always turned out to be a

few weeks, and it'd be months before I was able to cut down again to the dose

I had been taking previously. It's only in the last few months or so that

he's suddenly frowning at me for being on 20 mg a day, as if this were MY

idea. <grumble> Yes, I'm cranky.

cheers

Jenni

[Guest guest]

this is just a thought about thinness but is now very thin and I

think in part it is the jra and her eating patterns I also think that it is

the way the muscle's develop went for a pt aval the other day and I

asked her why she looks so spindly and she said that it is from the lack of

use of her primary muscle's due to the jra ,because of the pain she

compensates with other thing I hope this makes since I am confusing my own

words well good luck

>From: Georgina <gmckin@...>

>Reply- onelist

> onelist

>Subject: Re: [ ] Robbie

>Date: Tue, 19 Oct 1999 19:26:31 -1000

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>From: Georgina <gmckin@...>

>

>

>Hi Jana,

>

>My son was always on the slim side. Still is, I guess, except that he's

>been on somewhat high doses of daily steroids and it bloats him. Very

>big cheeks, tummy, and waist. When the dose gets lower, he slims down

>again. At around 12mgs of prednisone, he usually loses all signs of

>being Cushingoid. I've noticed, too, that MANY kids with JRA are very

>tall and slim. I don't know why that is.

>

>I thought I was the only one who didn't have access close by to a

>pediatric rheumatologist! There aren't any on the island of Maui,

>either. We have to fly off island to Oahu to see them, if we need to, in

>between the regular monthly appts when they fly over for JRA clinics :-)

>

>I'm not sure that any doctors should be considered 'prednisone

>advocates'. I think at this point they are all aware of the inherent

>risks and side effects. I don't think they would choose to use it on a

>regular, long term basis unless it was seen as being medically

>necessary. Some kids respond better to the other meds and are able to

>wean off steroids really quickly, if they even need them at all when

>they first get sick. Some newly diagnosed kids are being started right

>away on DMARDs and not even getting steroids, from what I've heard. For

>some others, there seems no better med available. It definitely controls

>the symptoms well and very quickly. But DMARDs are needed to affect the

>course of illness, most times, because the arthritis will continue on in

>the background even on steroid therapy, in a lot of cases. My son almost

>died during the initial onset of JRA. His spleen, liver and heart and

>many joints were affected. His extremely high fevers didn't respond to

>ordinary measures (NSAIDs). He started taking MTX after one week in the

>hospital but it wouldn't have worked quickly enough to save him. That's

>why he got prednisone. So, while I hate that he hasn't been able to

>discontinue it, I am very grateful to have at least one drug available

>that definitely helps during the rare but very scary flare ups. Some

>people do become steroid dependent. And he may become one of them. But

>I've also heard stories of people who took steroids for many, many years

>and were finally able to discontinue them when the arthritis went into

>remission. I guess only time will tell. I like to try to stay

>optimistic, though. Helps Josh not to get too discouraged.

>

>Take care,

>Georgina

>

>>Visit my homepage for a list of sites with info on childhood arthritis:

>http://www.geocities.com/Heartland/Village/8414/

[Guest guest]

Hi ,

No, I don't think your comments were confusing at all :-) You explained

it well. Our doctor at one time was saying something similar -that one

of the benefits of using growth hormone on children with GH deficiency,

who have JRA, was that it changes the composition of body mass and

muscle mass to more normal proportions. I was talking about how strange

it is that most JRA kids that I've met seem tall and very thin and yet

my son is so short and chubby (probably because of prednisone)that I'm

no longer even sure of what his normal body type would look like. He was

also saying that children with JRA who don't even use steroids as part

of their treatment can have abnormal bone growth patterns ... sometimes

very small and short, other times very tall. Or sometimes, one limb may

grow way out of proportion to the other. If it happens with their legs,

they may need special custom built shoes to make up the difference.

Take care,

Georgina

SHANNON MARTINO wrote:

>

> this is just a thought about thinness but is now very thin and I

> think in part it is the jra and her eating patterns I also think that it is

> the way the muscle's develop went for a pt aval the other day and I

> asked her why she looks so spindly and she said that it is from the lack of

> use of her primary muscle's due to the jra ,because of the pain she

> compensates with other thing I hope this makes since I am confusing my own

> words well good luck

[Guest guest]

remy said that anything under

10 mg was ok 5 mg from what she said agout brooke and she is three was fine

almost harmless she also said that while a child is in flare they do not

grow ? could that be it? good luck

>From: JanaB41@...

>Reply- onelist

> onelist

>Subject: Re: [ ] Robbie

>Date: Fri, 22 Oct 1999 19:04:21 EDT

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>From: JanaB41@...

>

>Janet,

>

>Sorry for the slow response, I have been out of town. Robbie's weight has

>been

>on my mind for the entire time he has been sick. This is because he had

>Giardia (parasite) prior to the onset of JRA. He had Giardia for ~ 8

>months

>and 10 doctor visits without diagnosing it. He weighed 70 lbs at the end

>of

>2nd grade (big boy), dropped to around 50 lbs with the Giardia in 3rd, and

>is 74 lbs in 7th. We are all tall in my family, and most of us are thin...

>I'm not

>sure I qualify anymore.... my 16 year old daughter is 5'9, she was 4 "

>taller

>and

>20 lbs heavier at Robbie's current age. I am not sure any of this proves

>anything.

>

>Since Robbie is doing fine on 5mg of Prednisone a day, should we change him

>because it may be slowing his growth? I need to keep in mind how fortunate

>he

>is to be doing as well as he is!

>

>Thanks, Jana

>

>>Visit my homepage for a list of sites with info on childhood arthritis:

>http://www.geocities.com/Heartland/Village/8414/

[Guest guest]

Janet,

Sorry for the slow response, I have been out of town. Robbie's weight has

been

on my mind for the entire time he has been sick. This is because he had

Giardia (parasite) prior to the onset of JRA. He had Giardia for ~ 8 months

and 10 doctor visits without diagnosing it. He weighed 70 lbs at the end of

2nd grade (big boy), dropped to around 50 lbs with the Giardia in 3rd, and

is 74 lbs in 7th. We are all tall in my family, and most of us are thin...

I'm not

sure I qualify anymore.... my 16 year old daughter is 5'9, she was 4 " taller

and

20 lbs heavier at Robbie's current age. I am not sure any of this proves

anything.

Since Robbie is doing fine on 5mg of Prednisone a day, should we change him

because it may be slowing his growth? I need to keep in mind how fortunate he

is to be doing as well as he is!

Thanks, Jana

[Guest guest]

I find this interesting..... Robbie's doctor tells me every time I ask " the

active JRA will

hurt him and stunt his growth much more then the Prednisone. "

Jana

[Guest guest]

,

It makes sense. Thanks, Jana

[Guest guest]

Jana,

There seems to be some proof that alternate day therapy allows more growth.

An example might be 2.5 mg every other day with 6 mg on the other days. You

would have to speak to your doctor though and get a more accurate assessments

wrote about this just the other day.

[Guest guest]

,

Yes, I agree. They do not grow in a flare, so if 5 mg of Prednisone keeps

him from a flare, then it may be worth it. That is what I am trying to

figure out. (He is in a flare right now.) Jana

[Guest guest]

I have called Robbie's doctor about this. Thanks!

[Guest guest]

I am having a hard time with this whole flare thing is in a flare

when? I do not know Or she only having jra symptoms I never can tell the

differences if you could give me what you think are guide lines that work

for you that I could compare it to. What is what this is confusing to me

> had a fever this morning and she has swelling in her feet, her left

knee ,her left hand and her right hand I always took that as symptoms .Is my

thinking wrong ??? I do not know any input or thought s would be wonderful

Thanks for your time

>From: JanaB41@...

>Reply- onelist

> onelist

>Subject: Re: [ ] Robbie

>Date: Mon, 25 Oct 1999 16:28:34 EDT

>MIME-Version: 1.0

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>1999

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>

>From: JanaB41@...

>

>,

>

>Yes, I agree. They do not grow in a flare, so if 5 mg of Prednisone keeps

> him from a flare, then it may be worth it. That is what I am trying to

> figure out. (He is in a flare right now.) Jana

>

>>Visit my homepage for a list of sites with info on childhood arthritis:

>http://www.geocities.com/Heartland/Village/8414/

>

[Guest guest]

If has swelling, the JRA is active. Since we have been doing this for

4 or 5 years, we go through periods where we don't see much sign of the

disease.

(He has a finger on each hand that is curled over every morning which has

never

gone away.) I call it a flare when we go from these " calm " times to joint

pain

and/or swelling. It tooks us about 2 years from the beginning to have these

calm times. Jana

[Guest guest]

Thank you I can never seem to get it strait then I guess I would say that

is in Flare. I have another question! how often ,and when do you

Bring your children to the doctor? I bring almost every time she has

alot of pain ,like the other day she had real bad knee pain I gave her

tylenol, pred and it still hurt then I gave her motrin and that helped so

any way at what point am I being a pain in the you know what!!!!:-) I just

hate to see her hurting and I want them to make it better but they seldom do

any thing except humor me I think well thank you for your time

>From: JanaB41@...

>Reply- onelist

> onelist

>Subject: Re: [ ] Robbie

>Date: Wed, 27 Oct 1999 12:43:09 EDT

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>From: JanaB41@...

>

>If has swelling, the JRA is active. Since we have been doing this

>for

>4 or 5 years, we go through periods where we don't see much sign of the

>disease.

>(He has a finger on each hand that is curled over every morning which has

>never

>gone away.) I call it a flare when we go from these " calm " times to joint

>pain

>and/or swelling. It tooks us about 2 years from the beginning to have

>these

>calm times. Jana

>

>>Visit my homepage for a list of sites with info on childhood arthritis:

>http://www.geocities.com/Heartland/Village/8414/

[Guest guest]

,

I take Robbie every three months now. When he was at his worst he went

every week because the Dr gave him the MTX injections himself for 2

years. If we have problems now during the 3 months, I usually just call.

is taking the prednisone regularly, right? Not just when she is

bad?

Jana

[Guest guest]

only takes 2mg a day now I want it to go back up ,because she did so

much better when it was even @5 mg we will see

>From: JanaB41@...

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> onelist

>Subject: Re: [ ] Robbie

>Date: Thu, 28 Oct 1999 22:03:27 EDT

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>1999

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>From: JanaB41@...

>

>,

>

>I take Robbie every three months now. When he was at his worst he went

>every week because the Dr gave him the MTX injections himself for 2

>years. If we have problems now during the 3 months, I usually just call.

> is taking the prednisone regularly, right? Not just when she is

>bad?

>

>Jana

>

>>Visit my homepage for a list of sites with info on childhood arthritis:

>http://www.geocities.com/Heartland/Village/8414/

>

[Guest guest]

thank you that makes me feel better!!!!

>From: " Janet & Gilbert Moyer " <gjam@...>

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>< onelist>

>Subject: Re: [ ] Robbie

>Date: Fri, 29 Oct 1999 07:59:39 -0500

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>From: " Janet & Gilbert Moyer " <gjam@...>

>

>,

>

>If Mandy is not doing well, the doctor wants to see her no matter what.

>Even

>if he does not have a quick remedy. Last year when she was really bad, we

>were there almost every week. Now that she is doing well, we do not have to

>see him for 2 months, but if anything happens in between, he will want to

>see her. Janet

>

> Re: [ ] Robbie

> > >Date: Wed, 27 Oct 1999 12:43:09 EDT

> > >MIME-Version: 1.0

> > >From errors-80038-1761-shancna Wed Oct 27 09:44:07 1999

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>-0000

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> > >From: JanaB41@...

> > >

> > >If has swelling, the JRA is active. Since we have been doing

>this

> > >for

> > >4 or 5 years, we go through periods where we don't see much sign of the

> > >disease.

> > >(He has a finger on each hand that is curled over every morning which

>has

> > >never

> > >gone away.) I call it a flare when we go from these " calm " times to

>joint

> > >pain

> > >and/or swelling. It tooks us about 2 years from the beginning to have

> > >these

> > >calm times. Jana

> > >

> > >>Visit my homepage for a list of sites with info on childhood

>arthritis:

> > >http://www.geocities.com/Heartland/Village/8414/

> >

> > > Visit my homepage for a list of sites with info on childhood

>arthritis:

> > http://www.geocities.com/Heartland/Village/8414/

>

>>Visit my homepage for a list of sites with info on childhood arthritis:

>http://www.geocities.com/Heartland/Village/8414/

[Guest guest]

,

If Mandy is not doing well, the doctor wants to see her no matter what. Even

if he does not have a quick remedy. Last year when she was really bad, we

were there almost every week. Now that she is doing well, we do not have to

see him for 2 months, but if anything happens in between, he will want to

see her. Janet

Re: [ ] Robbie

> >Date: Wed, 27 Oct 1999 12:43:09 EDT

> >MIME-Version: 1.0

> >From errors-80038-1761-shancna Wed Oct 27 09:44:07 1999

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27

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> >From: JanaB41@...

> >

> >If has swelling, the JRA is active. Since we have been doing this

> >for

> >4 or 5 years, we go through periods where we don't see much sign of the

> >disease.

> >(He has a finger on each hand that is curled over every morning which has

> >never

> >gone away.) I call it a flare when we go from these " calm " times to

joint

> >pain

> >and/or swelling. It tooks us about 2 years from the beginning to have

> >these

> >calm times. Jana

> >

> >>Visit my homepage for a list of sites with info on childhood arthritis:

> >http://www.geocities.com/Heartland/Village/8414/

>

> > Visit my homepage for a list of sites with info on childhood arthritis:

> http://www.geocities.com/Heartland/Village/8414/