Re: Medicines for systemic jra

[Guest guest]

Kirsten,

Our son has systemic JRA too and was very sick. We heard from doctors that the

course is to try Enbrel, then Humira, then Remicade, and then move on to

Kineret, and then Thalidomide or other new drugs, but that is way off for you.

Our son was also positive for lyme and co-infection and benefitted from a long

term treatment of antibiotics, which not all doctors like to do. You could make

sure he is not positive for those infections too and some labs are better than

others for this test. That is all my quick advice. Good luck! Jan

Medicines for systemic jra

What medicines do children with systemic JRA use, and what helps?

My son (14,systemic, Oslo, Norway) is now in hospital, and the

doctors are discussing his medicines. He is already on NSAID, but that

isn't enough. He has high fever half of the days, and hasn't been much

to school since summer.His joints hurts but they are not swollen or

red.

We are trying to avoid Prednison/Steroid as the side-effects are really

bad.

I guess they will put him on MTX, but is that enough? And what about

the period till it starts to work in 6-8 weeks? He has been on Enbrel

some years ago, should I ask for that also? I have to decide what to

ask for before I speek to the doctors tomorrow.

I appreciate your help and thougts!

Kirsten

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[Guest guest]

Thank you Jan

That was helpful.

I will discuss with them tomorrow if he can have both Enbrel and

Methotrexat. I've done some reading about Humira and Kineret as you

mentioned them. It seems that in Norway only adults will get those

two. I will ask about the lyme and co-infection also. Thanks.

Kirsten

>

> Kirsten,

>

> Our son has systemic JRA too and was very sick. We heard from

doctors that the course is to try Enbrel, then Humira, then Remicade,

and then move on to Kineret, and then Thalidomide or other new drugs,

but that is way off for you. Our son was also positive for lyme and

co-infection and benefitted from a long term treatment of

antibiotics, which not all doctors like to do. You could make sure

he is not positive for those infections too and some labs are better

than others for this test. That is all my quick advice. Good luck!

Jan

>

>

> Medicines for systemic jra

>

>

> What medicines do children with systemic JRA use, and what helps?

>

> My son (14,systemic, Oslo, Norway) is now in hospital, and

the

> doctors are discussing his medicines. He is already on NSAID, but

that

> isn't enough. He has high fever half of the days, and hasn't been

much

> to school since summer.His joints hurts but they are not swollen or

> red.

> We are trying to avoid Prednison/Steroid as the side-effects are

really

> bad.

>

> I guess they will put him on MTX, but is that enough? And what

about

> the period till it starts to work in 6-8 weeks? He has been on

Enbrel

> some years ago, should I ask for that also? I have to decide what

to

> ask for before I speek to the doctors tomorrow.

>

> I appreciate your help and thougts!

>

> Kirsten

>

>

>

>

______________________________________________________________________

__

> Check out the new AOL. Most comprehensive set of free safety and

security tools, free access to millions of high-quality videos from

across the web, free AOL Mail and more.

>

>

>

[Guest guest]

Hi Kirsten,

n is on mtx, but was on mtx and enbrel until this last April.

If is doing so bad, I would imagine they might give him IV

steroids, a pulse of it, until the mtx can kick in. After several

months, if the mtx isn't holding him, then they might add a biological.

The advantage of getting a pulse of steroids is that he isn't on a

daily dose. They might give him 1000mg of solomedrol for three days

and that might get him over the hump. It may or may not. You know

how this disease can be. The steroids usually stop the fevers dead

in their tracks. That has been our experience. Good luck and keep

us posted. (n, 17,systemic)

On Oct 31, 2006, at 11:17 AM, Kirsten wrote:

> What medicines do children with systemic JRA use, and what helps?

>

> My son (14,systemic, Oslo, Norway) is now in hospital, and the

> doctors are discussing his medicines. He is already on NSAID, but that

> isn't enough. He has high fever half of the days, and hasn't been much

> to school since summer.His joints hurts but they are not swollen or

> red.

> We are trying to avoid Prednison/Steroid as the side-effects are

> really

> bad.

>

> I guess they will put him on MTX, but is that enough? And what about

> the period till it starts to work in 6-8 weeks? He has been on Enbrel

> some years ago, should I ask for that also? I have to decide what to

> ask for before I speek to the doctors tomorrow.

>

> I appreciate your help and thougts!

>

> Kirsten

>

>

>

[Guest guest]

Hello

and thanks. I'll discuss the pulse of steroids with them. I haven't

heard of Solomedrol, and can't find it on the web. But I guess it's

about the same as Prednisolon which we already know. It seems like

several of the doctors we've met in Oslo so far, don't know very much

of how to medicate syst.jra. I guess they haven't met too many

pasients with that diagnose. But the dr we will meet tomorrow knows a

lot I believe. I'll keep you posted.

Kirsten

>

> > What medicines do children with systemic JRA use, and what helps?

> >

> > My son (14,systemic, Oslo, Norway) is now in hospital, and

the

> > doctors are discussing his medicines. He is already on NSAID, but

that

> > isn't enough. He has high fever half of the days, and hasn't been

much

> > to school since summer.His joints hurts but they are not swollen

or

> > red.

> > We are trying to avoid Prednison/Steroid as the side-effects are

> > really

> > bad.

> >

> > I guess they will put him on MTX, but is that enough? And what

about

> > the period till it starts to work in 6-8 weeks? He has been on

Enbrel

> > some years ago, should I ask for that also? I have to decide what

to

> > ask for before I speek to the doctors tomorrow.

> >

> > I appreciate your help and thougts!

> >

> > Kirsten

> >

> >

> >

>

>

>

>

[Guest guest]

Kirsten,

my son is systemic, he is currently on relafen, MTX, remicade, folic

acid and prilosec. He has just finally stopped prednisone after 2

year and 7 months of daily use.

Before remicade he was on enbrel but that stopped working well after

about 9 months.

Good luck and I hope you find the right combo of drugs for .

hugs Helen and (9,systemic)

>

> What medicines do children with systemic JRA use, and what helps?

>

> My son (14,systemic, Oslo, Norway) is now in hospital, and

the

> doctors are discussing his medicines. He is already on NSAID, but

that

> isn't enough. He has high fever half of the days, and hasn't been

much

> to school since summer.His joints hurts but they are not swollen

or

> red.

> We are trying to avoid Prednison/Steroid as the side-effects are

really

> bad.

>

> I guess they will put him on MTX, but is that enough? And what

about

> the period till it starts to work in 6-8 weeks? He has been on

Enbrel

> some years ago, should I ask for that also? I have to decide what

to

> ask for before I speek to the doctors tomorrow.

>

> I appreciate your help and thougts!

>

> Kirsten

>

[Guest guest]

, Jan and Helen and all

I brought the mail from the three of you with me when and I saw

the doctor in the hospital today. She was so satisfied with your tips

and wanted to read them all. Then we talked about letting have

a very high dose of steroids spred on three following days like you

said.She had done that before. And starting to give him MTX also.

And maybe Enbrel. She also wanted another blood-test to look for

infections. She will now discuss it with her colleages. So I think he

will start with the steroids in the hospital on monday.

I feel very happy that she would use the tips from this list. And I

feel so proud of you parents in here, and happy that it's possible to

use your experience to help our doctors on 's hospital!

is doing fine today. He hasn't had a fever in 5 days, and

that's long. On friday, saturday and sunday he will join a group in

the hospital together with 10 14-15 year old youths. They will have

lectures in how to cope and live with JRA. And I hope they will have

some fun to.

I'm so glad right now. Thanks!

Kirsten (Oslo, Norway, 14 systemic)

> >

> > What medicines do children with systemic JRA use, and what helps?

> >

> > My son (14,systemic, Oslo, Norway) is now in hospital, and

> the

> > doctors are discussing his medicines. He is already on NSAID, but

> that

> > isn't enough. He has high fever half of the days, and hasn't been

> much

> > to school since summer.His joints hurts but they are not swollen

> or

> > red.

> > We are trying to avoid Prednison/Steroid as the side-effects are

> really

> > bad.

> >

> > I guess they will put him on MTX, but is that enough? And what

> about

> > the period till it starts to work in 6-8 weeks? He has been on

> Enbrel

> > some years ago, should I ask for that also? I have to decide what

> to

> > ask for before I speek to the doctors tomorrow.

> >

> > I appreciate your help and thougts!

> >

> > Kirsten

> >

>

[Guest guest]

Kirsten,

Thats wonderful news that your dr. readily accepted the input that

you provided her with. It shows a lot about her not having such a

huge ego and willing to listen to your point of view and that of

others.

I hope that the hosp group that attends will be beneficial and

lots of fun!

blessings,

sonia (aundrea 11 systemic jra/gerd)-

-- In , " Kirsten " <krpuer@...> wrote:

>

> , Jan and Helen and all

>

> I brought the mail from the three of you with me when and I

saw

> the doctor in the hospital today. She was so satisfied with your

tips

> and wanted to read them all. Then we talked about letting

have

> a very high dose of steroids spred on three following days like

you

> said.She had done that before. And starting to give him MTX also.

> And maybe Enbrel. She also wanted another blood-test to look for

> infections. She will now discuss it with her colleages. So I think

he

> will start with the steroids in the hospital on monday.

> I feel very happy that she would use the tips from this list. And

I

> feel so proud of you parents in here, and happy that it's possible

to

> use your experience to help our doctors on 's hospital!

>

> is doing fine today. He hasn't had a fever in 5 days, and

> that's long. On friday, saturday and sunday he will join a group

in

> the hospital together with 10 14-15 year old youths. They will

have

> lectures in how to cope and live with JRA. And I hope they will

have

> some fun to.

>

> I'm so glad right now. Thanks!

>

> Kirsten (Oslo, Norway, 14 systemic)

>

>

>

>

> > >

> > > What medicines do children with systemic JRA use, and what

helps?

> > >

> > > My son (14,systemic, Oslo, Norway) is now in hospital,

and

> > the

> > > doctors are discussing his medicines. He is already on NSAID,

but

> > that

> > > isn't enough. He has high fever half of the days, and hasn't

been

> > much

> > > to school since summer.His joints hurts but they are not

swollen

> > or

> > > red.

> > > We are trying to avoid Prednison/Steroid as the side-effects

are

> > really

> > > bad.

> > >

> > > I guess they will put him on MTX, but is that enough? And what

> > about

> > > the period till it starts to work in 6-8 weeks? He has been on

> > Enbrel

> > > some years ago, should I ask for that also? I have to decide

what

> > to

> > > ask for before I speek to the doctors tomorrow.

> > >

> > > I appreciate your help and thougts!

> > >

> > > Kirsten

> > >

> >

>

[Guest guest]

Kirsten, I hope and pray keeps improving. has gone through fever

phases and so it's a guessing game as to determine if fever is infection or jra.

' fevers were in the am and I read most are in the pm so it can be confusing

to say the least. He will get rashes that itch and rashes that don't-then I am

left wondering if it's a med. or jra or something new--Does everyone go through

this? is on MTX once a week, Zantac to prevent upset stomach,

hydroxychloroquine split dose of 100mg am and 200mg pm, prednisone 15mg am and

5mg pm (added 5mg pm during flare) and tylenol or Ibuprofen as needed (he won't

take these as he says they don't help but at times he will take a dose) He

initially was on alieve (naprosyn) 220mg am 220mg pm but he said it did not work

either--Guess he would know. He also takes 1mg of folate daily due to being on

MTX. was diagnosed in feb of 2006 so I am no more understanding of this

illness to be honest only that it is

unpredictable and each child is different. is 13 and will be 14 in

January so our boys are close in age. Take care and say hello to from

and I. Janet ( 13, sys. jra)

Re: Medicines for systemic jra

, Jan and Helen and all

I brought the mail from the three of you with me when and I saw

the doctor in the hospital today. She was so satisfied with your tips

and wanted to read them all. Then we talked about letting have

a very high dose of steroids spred on three following days like you

said.She had done that before. And starting to give him MTX also.

And maybe Enbrel. She also wanted another blood-test to look for

infections. She will now discuss it with her colleages. So I think he

will start with the steroids in the hospital on monday.

I feel very happy that she would use the tips from this list. And I

feel so proud of you parents in here, and happy that it's possible to

use your experience to help our doctors on 's hospital!

is doing fine today. He hasn't had a fever in 5 days, and

that's long. On friday, saturday and sunday he will join a group in

the hospital together with 10 14-15 year old youths. They will have

lectures in how to cope and live with JRA. And I hope they will have

some fun to.

I'm so glad right now. Thanks!

Kirsten (Oslo, Norway, 14 systemic)

> >

> > What medicines do children with systemic JRA use, and what helps?

> >

> > My son (14,systemic, Oslo, Norway) is now in hospital, and

> the

> > doctors are discussing his medicines. He is already on NSAID, but

> that

> > isn't enough. He has high fever half of the days, and hasn't been

> much

> > to school since summer.His joints hurts but they are not swollen

> or

> > red.

> > We are trying to avoid Prednison/Steroid as the side-effects are

> really

> > bad.

> >

> > I guess they will put him on MTX, but is that enough? And what

> about

> > the period till it starts to work in 6-8 weeks? He has been on

> Enbrel

> > some years ago, should I ask for that also? I have to decide what

> to

> > ask for before I speek to the doctors tomorrow.

> >

> > I appreciate your help and thougts!

> >

> > Kirsten

> >

>

[Guest guest]

Hello Janet!

I'm sorry to hear about . Does he still have flares? I hope that

's fevers have left, at least for a while. He had 3 big doses of

steroids in his veines on friday, saturday and today sunday. And

right now he feels fine. He is also on NSAID, and from tomorrow he

will also have indocid and MTX. We try to avoid prednisolon/steroids

all we can. He don't want to gain a lot of weight and become

unrecognisable and suicidal like last time. 5 years ago he was on

steroids for one and a halv year, and that was not nice.

I have experienced the same as you, fevers in am and pm, up and down

and up again. And rashes. In january he had them. Since then they

have been gone. And often sore throat. I've learned that can be part

of the illness. His doctor (not the rheum) tend to take the sore

throat as a sign of an infection. And the pain moves around from one

day to another. It is all so inpredictable.

But we still hope that the illness goes away and stays away. is

very optimistic, and I try to be that too.

I hope that gets better and that all that medicine helps him.

Is he at school regularly?

We're back in hospital tomorrow morning. All the best for you and

.

Love, Kirsten (Oslo,Norway, 14, systemic)

> > >

> > > What medicines do children with systemic JRA use, and what

helps?

> > >

> > > My son (14,systemic, Oslo, Norway) is now in hospital,

and

> > the

> > > doctors are discussing his medicines. He is already on NSAID,

but

> > that

> > > isn't enough. He has high fever half of the days, and hasn't

been

> > much

> > > to school since summer.His joints hurts but they are not

swollen

> > or

> > > red.

> > > We are trying to avoid Prednison/Steroid as the side-effects

are

> > really

> > > bad.

> > >

> > > I guess they will put him on MTX, but is that enough? And what

> > about

> > > the period till it starts to work in 6-8 weeks? He has been on

> > Enbrel

> > > some years ago, should I ask for that also? I have to decide

what

> > to

> > > ask for before I speek to the doctors tomorrow.

> > >

> > > I appreciate your help and thougts!

> > >

> > > Kirsten

> > >

> >

>

>

>

>

>

>

>

[Guest guest]

Hi Kirsten, n gets the sore throat, too. We call it her

" arthritis sore throat. " She hasn't had the rash in a very long

time. Hers usually itches. The doctors say that it isn't supposed

to itch, and that the sore throat isn't part of the systemic, but I

say, " After seven years, this is how she presents with the disease. "

She also gets bad headaches. Her arthritis moves around, but it has

settled in her wrists in the past. Take care, (n,

17,systemic)

On Nov 5, 2006, at 2:19 PM, Kirsten wrote:

> Hello Janet!

> I'm sorry to hear about . Does he still have flares? I hope that

> 's fevers have left, at least for a while. He had 3 big doses of

> steroids in his veines on friday, saturday and today sunday. And

> right now he feels fine. He is also on NSAID, and from tomorrow he

> will also have indocid and MTX. We try to avoid prednisolon/steroids

> all we can. He don't want to gain a lot of weight and become

> unrecognisable and suicidal like last time. 5 years ago he was on

> steroids for one and a halv year, and that was not nice.

> I have experienced the same as you, fevers in am and pm, up and down

> and up again. And rashes. In january he had them. Since then they

> have been gone. And often sore throat. I've learned that can be part

> of the illness. His doctor (not the rheum) tend to take the sore

> throat as a sign of an infection. And the pain moves around from one

> day to another. It is all so inpredictable.

> But we still hope that the illness goes away and stays away. is

> very optimistic, and I try to be that too.

> I hope that gets better and that all that medicine helps him.

> Is he at school regularly?

> We're back in hospital tomorrow morning. All the best for you and

> .

> Love, Kirsten (Oslo,Norway, 14, systemic)

>

>

> > > >

> > > > What medicines do children with systemic JRA use, and what

> helps?

> > > >

> > > > My son (14,systemic, Oslo, Norway) is now in hospital,

> and

> > > the

> > > > doctors are discussing his medicines. He is already on NSAID,

> but

> > > that

> > > > isn't enough. He has high fever half of the days, and hasn't

> been

> > > much

> > > > to school since summer.His joints hurts but they are not

> swollen

> > > or

> > > > red.

> > > > We are trying to avoid Prednison/Steroid as the side-effects

> are

> > > really

> > > > bad.

> > > >

> > > > I guess they will put him on MTX, but is that enough? And what

> > > about

> > > > the period till it starts to work in 6-8 weeks? He has been on

> > > Enbrel

> > > > some years ago, should I ask for that also? I have to decide

> what

> > > to

> > > > ask for before I speek to the doctors tomorrow.

> > > >

> > > > I appreciate your help and thougts!

> > > >

> > > > Kirsten

> > > >

> > >

> >

> >

> >

> >

> >

> >

> >