Re: Riley's rheumy visit

[Guest guest]

Hi jona, yes, Riley has noticeable swelling in both knees, her ankle, and her wrist. It's kinda noticeable in her fingers too. Thanks for your post. I think I'm gonna go for the kineret. My mother in law subscribed to the kids get arthritis newsletter for me, I'm waiting on my first issue. I ordered Raising a child with arthritis a parents guide from amazon and I just got it. Thanks for your warm wishes.

Eli and Riley 4 poly

[Guest guest]

---Hi Eli,

I am so glad you finally found out for sure. And since you asked

what we thought you should do about the medicine ;I would probably

put her on the most agresssive kind ,like the kineret(since there is

no enbrel right now)but the methotrexate ; I have heard that a lot

of kids can't tolerate the metho. and na couldn't tolerate the

metho either; it caused her to have sores in her mouth and it caused

her to have liver funtions because it is hard on the liver and they

have to do a lot of blood work all the time.It also caused her to

get big swollen red spots on her legs and arms but it all went away

after they finally took her off of it; but all kids are different.

And I don't know much about the kineret but I read about it in the

magazine called ARTHRITIS TODAY and it does sound promising. The

more aggressivly they treat it in the beginning the better chance of

her going into remission. Also if you haven't already heard about

this there is newsletter that you can get called KIDS GET ARTHRITIS

TOO and you get the ARTHRITIS TODAY along with that and you only

have to donate $20.00 to get these and it is all through the

arthritis foundation. Your doctor probably told you about that today

but I just wanted to try and help. I will be praying for you and

Riley and I wish the best possible for you.

Jona, mom of na 2 poly

In @y..., " skyleysmom " <skyley8@c...> wrote:

> Hi everyone, Thank you all soooooo much for all of your posts and

> prayers and concern etc. Here's the update. Riley has poly. No

more

> question mark. She has it in joints that I didn't even know she

> had. It's all over her. It's not in her Hips or her back though

and

> I'm hoping that it never gets there. Her rheumy said that it's

not

> systemic. I hope he's right. He seemed like he knew what he was

> talking about. He prescribed vioxx so I'm getting her off of that

> nasty naprosyn. He wants to treat it aggressivly. He said I

could

> choose to put her on methotrexate or she could take part in a

> clinical trial at childrens hospital and put her on Kineret. I

guess

> they've been testing it on kids for a while. He said that enebrel

is

> totally unavailable. He said that they're building some lab

somewhere

> where they would start producing it, but for now it's virtually

> nonexistent. I'm thinking of doing the Kineret thing. What do

you

> all think? I hear it's worked wonders for adults and there are no

> side effects. Scary stuff. He also said that she can have all of

> her immunizations. Just not to mix the live and dead vaccines.

More

> scary stuff. He thinks that she will resond well to the Kineret

and

> that she'll be pretty much her old self in about 6 months. I

can't

> believe that I have to think about all this stuff. It's mind

> numbing. I've never really felt like a grown up before now. I

sure

> do lately. I talked to her daddy. He was so sad. I think it's

> especially hard for him because he can't even be here right now

and

> he feels like he has even less control than I do. The Kineret is

> given in a daily injection. He and I both hate to have to put her

> through that. She's so phobic of needles. I guess it's the

lesser

> of 2 evils. Thanks for being there.

> Hugs from me Eli and Riley 4 poly

[Guest guest]

--Hi I forgot to say something else about the magazines and

newsletter; It is $20.00 for a whole years worth. Oh and I can't

remember if you said or not but does Riley have noticable swelling

in her joints? My prayers are with you, Jona, mom of na 2

poly

- In @y..., " lovelyjayc " <jaycpepsi@y...> wrote:

> ---Hi Eli,

> I am so glad you finally found out for sure. And since you asked

> what we thought you should do about the medicine ;I would probably

> put her on the most agresssive kind ,like the kineret(since there

is

> no enbrel right now)but the methotrexate ; I have heard that a lot

> of kids can't tolerate the metho. and na couldn't tolerate

the

> metho either; it caused her to have sores in her mouth and it

caused

> her to have liver funtions because it is hard on the liver and

they

> have to do a lot of blood work all the time.It also caused her to

> get big swollen red spots on her legs and arms but it all went

away

> after they finally took her off of it; but all kids are different.

> And I don't know much about the kineret but I read about it in the

> magazine called ARTHRITIS TODAY and it does sound promising. The

> more aggressivly they treat it in the beginning the better chance

of

> her going into remission. Also if you haven't already heard about

> this there is newsletter that you can get called KIDS GET

ARTHRITIS

> TOO and you get the ARTHRITIS TODAY along with that and you only

> have to donate $20.00 to get these and it is all through the

> arthritis foundation. Your doctor probably told you about that

today

> but I just wanted to try and help. I will be praying for you and

> Riley and I wish the best possible for you.

>

> Jona, mom of na 2 poly

>

>

> In @y..., " skyleysmom " <skyley8@c...> wrote:

> > Hi everyone, Thank you all soooooo much for all of your posts

and

> > prayers and concern etc. Here's the update. Riley has poly. No

> more

> > question mark. She has it in joints that I didn't even know she

> > had. It's all over her. It's not in her Hips or her back

though

> and

> > I'm hoping that it never gets there. Her rheumy said that it's

> not

> > systemic. I hope he's right. He seemed like he knew what he

was

> > talking about. He prescribed vioxx so I'm getting her off of

that

> > nasty naprosyn. He wants to treat it aggressivly. He said I

> could

> > choose to put her on methotrexate or she could take part in a

> > clinical trial at childrens hospital and put her on Kineret. I

> guess

> > they've been testing it on kids for a while. He said that

enebrel

> is

> > totally unavailable. He said that they're building some lab

> somewhere

> > where they would start producing it, but for now it's virtually

> > nonexistent. I'm thinking of doing the Kineret thing. What do

> you

> > all think? I hear it's worked wonders for adults and there are

no

> > side effects. Scary stuff. He also said that she can have all

of

> > her immunizations. Just not to mix the live and dead vaccines.

> More

> > scary stuff. He thinks that she will resond well to the Kineret

> and

> > that she'll be pretty much her old self in about 6 months. I

> can't

> > believe that I have to think about all this stuff. It's mind

> > numbing. I've never really felt like a grown up before now. I

> sure

> > do lately. I talked to her daddy. He was so sad. I think it's

> > especially hard for him because he can't even be here right now

> and

> > he feels like he has even less control than I do. The Kineret

is

> > given in a daily injection. He and I both hate to have to put

her

> > through that. She's so phobic of needles. I guess it's the

> lesser

> > of 2 evils. Thanks for being there.

> > Hugs from me Eli and Riley 4 poly

[Guest guest]

Jona & ELI

call your local arthritis foundation ask for whatever they have on this disease also if your child is in school theres a pamplet that is out called your student has arthritis or something like that it helps alittle with the teacher understanding but make sure you tell them to read it lolol the foundation has many to read also they may have one for the parents and one for the kids Robbin

[Guest guest]

Hi Eli,

That is great that your gonna get the newsletters and magazines; they have a lot of updates and stuff that we need to know about and stuff that we like to read to learn more about arthritis. And I have that same book that you said you just got. Well try not to go crazy like me, and my prayers are with you, Jona,mom of na 2 poly

skyley8@... wrote: Hi jona, yes, Riley has noticeable swelling in both knees, her ankle, and her wrist. It's kinda noticeable in her fingers too. Thanks for your post. I think I'm gonna go for the kineret. My mother in law subscribed to the kids get arthritis newsletter for me, I'm waiting on my first issue. I ordered Raising a child with arthritis a parents guide from amazon and I just got it. Thanks for your warm wishes. Eli and Riley 4 poly

[Guest guest]

Thank You Robbin,

I have every single phamplet that the arthrtis foundation has. I done that back when na was first diagnosed at 10 months old in 2001. Thanks for your support and I wish the best for you,

Jona, mom of na 2 poly

Robbin40@... wrote: Jona & ELI call your local arthritis foundation ask for whatever they have on this disease also if your child is in school theres a pamplet that is out called your student has arthritis or something like that it helps alittle with the teacher understanding but make sure you tell them to read it lolol the foundation has many to read also they may have one for the parents and one for the kids Robbin

[Guest guest]

I forgot to put something else. I also have another book that I ordered from the arthrtis foundation called PRIMER ON THE RHEUMATIC DISEASES EDITION 11 AN OFFICIAL PUBLICATION OF THE ARTHRITIS FOUNDATION It has so many rheumatic diseases in it I can't even count them. I got it when I was in denial that na didn't have JRA. Well best wishes to you, Jona mom of na 2 poly

jona <jaycpepsi@...> wrote:

Thank You Robbin, I have every single phamplet that the arthrtis foundation has. I done that back when na was first diagnosed at 10 months old in 2001. Thanks for your support and I wish the best for you, Jona, mom of na 2 poly Robbin40@... wrote: Jona & ELI call your local arthritis foundation ask for whatever they have on this disease also if your child is in school theres a pamplet that is out called your student has arthritis or something like that it helps alittle with the teacher understanding but make sure you tell them to read it lolol the foundation has many to read also they may have one for the parents and one for the kids Robbin

[Guest guest]

Eli-

I'm glad you have a diagnosis. At least you know it's not systemic. It's good your doctor wants to treat it aggressively right off the bat. I don't know much about Kineret, but I'm sure others will be able to help with that. Hope Riley starts feeling better soon.

Diane (, 3, pauci)

[Guest guest]

Dear Eli, This is just my two cents worth, so take it for what it is

worth--Methotrexate has been around for about twenty years and is considered

the gold standard with JRA. Kineret may be a wonderful drug, but the long

term side effects are totally unknown. Even enbrel is an unknown for long

term side effects, but people are usually put on it after another DMARD has

failed. I am conservative with medicine, so consider the source when I give

you my opinion. Our ped. rheumy said that about 75% of the kids are helped

with methotrexate. The other 25% have to move on to another medicine. Good

luck. (n, age 13, systemic)

>From: " skyleysmom " <skyley8@...>

>Reply-

>

>Subject: Riley's rheumy visit

>Date: Fri, 17 May 2002 01:59:36 -0000

>

>Hi everyone, Thank you all soooooo much for all of your posts and

>prayers and concern etc. Here's the update. Riley has poly. No more

>question mark. She has it in joints that I didn't even know she

>had. It's all over her. It's not in her Hips or her back though and

>I'm hoping that it never gets there. Her rheumy said that it's not

>systemic. I hope he's right. He seemed like he knew what he was

>talking about. He prescribed vioxx so I'm getting her off of that

>nasty naprosyn. He wants to treat it aggressivly. He said I could

>choose to put her on methotrexate or she could take part in a

>clinical trial at childrens hospital and put her on Kineret. I guess

>they've been testing it on kids for a while. He said that enebrel is

>totally unavailable. He said that they're building some lab somewhere

>where they would start producing it, but for now it's virtually

>nonexistent. I'm thinking of doing the Kineret thing. What do you

>all think? I hear it's worked wonders for adults and there are no

>side effects. Scary stuff. He also said that she can have all of

>her immunizations. Just not to mix the live and dead vaccines. More

>scary stuff. He thinks that she will resond well to the Kineret and

>that she'll be pretty much her old self in about 6 months. I can't

>believe that I have to think about all this stuff. It's mind

>numbing. I've never really felt like a grown up before now. I sure

>do lately. I talked to her daddy. He was so sad. I think it's

>especially hard for him because he can't even be here right now and

>he feels like he has even less control than I do. The Kineret is

>given in a daily injection. He and I both hate to have to put her

>through that. She's so phobic of needles. I guess it's the lesser

>of 2 evils. Thanks for being there.

>Hugs from me Eli and Riley 4 poly

>

>

>

>

>

>

[Guest guest]

Eli,

I would not say Kineret is the lessar of two evils.Methotrexate is a very good

drug,its been around a long time,the rheumys know how to catch side affects

early.For every person that cant take it I bet theres hundreds who can.There is

a man on this list named Mr.Rainey he lives in Ireland,hes on Kineret,he doesnt

post alot but the last time he did the Kineret was helping but the injection

reactions were awful,his leg turns red and hurts for hours.All these drugs have

side affects,Kinerets no differant,you still run the risk of serious infection

because of what it does to the immune system.You need to check into the trial

more,you need to make sure Riley will actually recieve the drug and not a

placebo.In all honesty I am VERY surprised they would allow a child who is just

being diagnosed and never been on another DMARD to join the trial.The 3 newer

drugs Enbrel ,Remicade and Kineret are usually not for first line therapy,Enbrel

however has been approved for it though.Do your homework,like I posted earlier

Methotrexate sounds scary,but in all honesty besides Plaquenil it is the

safest.Good luck on your decision and let us know what you decide.

Becki and 3systemic

W and C Price wrote:

> Dear Eli, This is just my two cents worth, so take it for what it is

> worth--Methotrexate has been around for about twenty years and is considered

> the gold standard with JRA. Kineret may be a wonderful drug, but the long

> term side effects are totally unknown. Even enbrel is an unknown for long

> term side effects, but people are usually put on it after another DMARD has

> failed. I am conservative with medicine, so consider the source when I give

> you my opinion. Our ped. rheumy said that about 75% of the kids are helped

> with methotrexate. The other 25% have to move on to another medicine. Good

> luck. (n, age 13, systemic)

>

> >From: " skyleysmom " <skyley8@...>

> >Reply-

> >

> >Subject: Riley's rheumy visit

> >Date: Fri, 17 May 2002 01:59:36 -0000

> >

> >Hi everyone, Thank you all soooooo much for all of your posts and

> >prayers and concern etc. Here's the update. Riley has poly. No more

> >question mark. She has it in joints that I didn't even know she

> >had. It's all over her. It's not in her Hips or her back though and

> >I'm hoping that it never gets there. Her rheumy said that it's not

> >systemic. I hope he's right. He seemed like he knew what he was

> >talking about. He prescribed vioxx so I'm getting her off of that

> >nasty naprosyn. He wants to treat it aggressivly. He said I could

> >choose to put her on methotrexate or she could take part in a

> >clinical trial at childrens hospital and put her on Kineret. I guess

> >they've been testing it on kids for a while. He said that enebrel is

> >totally unavailable. He said that they're building some lab somewhere

> >where they would start producing it, but for now it's virtually

> >nonexistent. I'm thinking of doing the Kineret thing. What do you

> >all think? I hear it's worked wonders for adults and there are no

> >side effects. Scary stuff. He also said that she can have all of

> >her immunizations. Just not to mix the live and dead vaccines. More

> >scary stuff. He thinks that she will resond well to the Kineret and

> >that she'll be pretty much her old self in about 6 months. I can't

> >believe that I have to think about all this stuff. It's mind

> >numbing. I've never really felt like a grown up before now. I sure

> >do lately. I talked to her daddy. He was so sad. I think it's

> >especially hard for him because he can't even be here right now and

> >he feels like he has even less control than I do. The Kineret is

> >given in a daily injection. He and I both hate to have to put her

> >through that. She's so phobic of needles. I guess it's the lesser

> >of 2 evils. Thanks for being there.

> >Hugs from me Eli and Riley 4 poly

> >

> >

> >

> >

> >

> >

[Guest guest]

Hi everyone, I'm pretty confused. I almoast wish the Dr. had just prescribed something and not given me a choice. I just want to do whats best for my daughter. I would hate to make the wrong decision and deny her something that could potentially help her.

Eli and Riley 4 poly

[Guest guest]

Hi everyone,

Please don't get mad for me saying this but I read an article in ARTHRITIS TODAY a few months ago It was a story by this woman It was called MY HUSBANDS HANDS i think(I can't find that magazine now but it was afew months ago) But anyway it was so sad I still remember some of it; this woman was talking about how her husband had been diagnosed with RA and how strong he use to be and he ended up having to carry an oxygen tank with him all the time because of a lung disease from being on methotrexate for so long. Anyone can contact Arthritis Today and ask them about the story if you don't beleive me but I am sure it was called My husbands hands.

Jona, mom of na 2 poly Allan Larson <alarson1@...> wrote: Eli,I would not say Kineret is the lessar of two evils.Methotrexate is a very gooddrug,its been around a long time,the rheumys know how to catch side affectsearly.For every person that cant take it I bet theres hundreds who can.There isa man on this list named Mr.Rainey he lives in Ireland,hes on Kineret,he doesntpost alot but the last time he did the Kineret was helping but the injectionreactions were awful,his leg turns red and hurts for hours.All these drugs haveside affects,Kinerets no differant,you still run the risk of serious infectionbecause of what it does to the immune system.You need to check into the trialmore,you need to make sure Riley will actually recieve the drug and not aplacebo.In all honesty I am VERY surprised they would allow a child who is justbeing diagnosed and never been on another DMARD to join the trial.The 3 newerdrugs Enbrel ,Remicade and Kineret are usually not for first line therapy,Enbrelhowever has been approved for it though.Do your homework,like I posted earlierMethotrexate sounds scary,but in all honesty besides Plaquenil it is thesafest.Good luck on your decision and let us know what you decide.Becki and 3systemicW and C Price wrote:> Dear Eli, This is just my two cents worth, so take it for what it is> worth--Methotrexate has been around for about twenty years and is considered> the gold standard with JRA. Kineret may be a wonderful drug, but the long> term side effects are totally unknown. Even enbrel is an unknown for long> term side effects, but people are usually put on it after another DMARD has> failed. I am conservative with medicine, so consider the source when I give> you my opinion. Our ped. rheumy said that about 75% of the kids are helped> with methotrexate. The other 25% have to move on to another medicine. Good> luck. (n, age 13, systemic)>> >From: "skyleysmom" <skyley8@...>> >Reply- > > > >Subject: Riley's rheumy visit> >Date: Fri, 17 May 2002 01:59:36 -0000> >> >Hi everyone, Thank you all soooooo much for all of your posts and> >prayers and concern etc. Here's the update. Riley has poly. No more> >question mark. She has it in joints that I didn't even know she> >had. It's all over her. It's not in her Hips or her back though and> >I'm hoping that it never gets there. Her rheumy said that it's not> >systemic. I hope he's right. He seemed like he knew what he was> >talking about. He prescribed vioxx so I'm getting her off of that> >nasty naprosyn. He wants to treat it aggressivly. He said I could> >choose to put her on methotrexate or she could take part in a> >clinical trial at childrens hospital and put her on Kineret. I guess> >they've been testing it on kids for a while. He said that enebrel is> >totally unavailable. He said that they're building some lab somewhere> >where they would start producing it, but for now it's virtually> >nonexistent. I'm thinking of doing the Kineret thing. What do you> >all think? I hear it's worked wonders for adults and there are no> >side effects. Scary stuff. He also said that she can have all of> >her immunizations. Just not to mix the live and dead vaccines. More> >scary stuff. He thinks that she will resond well to the Kineret and> >that she'll be pretty much her old self in about 6 months. I can't> >believe that I have to think about all this stuff. It's mind> >numbing. I've never really felt like a grown up before now. I sure> >do lately. I talked to her daddy. He was so sad. I think it's> >especially hard for him because he can't even be here right now and> >he feels like he has even less control than I do. The Kineret is> >given in a daily injection. He and I both hate to have to put her> >through that. She's so phobic of needles. I guess it's the lesser> >of 2 evils. Thanks for being there.> >Hugs from me Eli and Riley 4 poly> >> >> >> >> >> >

[Guest guest]

Eli,

While it is frustrating, I have found that the "good and caring" doctors are expecting parental involvement in this way. Read what you can, listen to your doctor (find one you trust if you don't trust the one you have), and don't look back once you have taken a course of action. Good luck with your decision, and remember that you are being guided by your love for your child.

Christy (Abbie, 12 systemic)

[Guest guest]

--Hi everyone,

The reason I told Eli that I would probably do the kineret in

because I think maybe the newer drugs are probably more improved

than the older ones, but it's true everyone is different and

responds to each drug differently. Jona,mom of na2 poly

- In @y..., Allan Larson <alarson1@b...> wrote:

> Eli,

> I would not say Kineret is the lessar of two evils.Methotrexate is

a very good

> drug,its been around a long time,the rheumys know how to catch

side affects

> early.For every person that cant take it I bet theres hundreds who

can.There is

> a man on this list named Mr.Rainey he lives in Ireland,hes on

Kineret,he doesnt

> post alot but the last time he did the Kineret was helping but the

injection

> reactions were awful,his leg turns red and hurts for hours.All

these drugs have

> side affects,Kinerets no differant,you still run the risk of

serious infection

> because of what it does to the immune system.You need to check

into the trial

> more,you need to make sure Riley will actually recieve the drug

and not a

> placebo.In all honesty I am VERY surprised they would allow a

child who is just

> being diagnosed and never been on another DMARD to join the

trial.The 3 newer

> drugs Enbrel ,Remicade and Kineret are usually not for first line

therapy,Enbrel

> however has been approved for it though.Do your homework,like I

posted earlier

> Methotrexate sounds scary,but in all honesty besides Plaquenil it

is the

> safest.Good luck on your decision and let us know what you decide.

> Becki and 3systemic

>

> W and C Price wrote:

>

> > Dear Eli, This is just my two cents worth, so take it for what

it is

> > worth--Methotrexate has been around for about twenty years and

is considered

> > the gold standard with JRA. Kineret may be a wonderful drug,

but the long

> > term side effects are totally unknown. Even enbrel is an unknown

for long

> > term side effects, but people are usually put on it after

another DMARD has

> > failed. I am conservative with medicine, so consider the source

when I give

> > you my opinion. Our ped. rheumy said that about 75% of the kids

are helped

> > with methotrexate. The other 25% have to move on to another

medicine. Good

> > luck. (n, age 13, systemic)

> >

> > >From: " skyleysmom " <skyley8@c...>

> > >Reply- @y...

> > > @y...

> > >Subject: Riley's rheumy visit

> > >Date: Fri, 17 May 2002 01:59:36 -0000

> > >

> > >Hi everyone, Thank you all soooooo much for all of your posts

and

> > >prayers and concern etc. Here's the update. Riley has poly.

No more

> > >question mark. She has it in joints that I didn't even know she

> > >had. It's all over her. It's not in her Hips or her back

though and

> > >I'm hoping that it never gets there. Her rheumy said that it's

not

> > >systemic. I hope he's right. He seemed like he knew what he

was

> > >talking about. He prescribed vioxx so I'm getting her off of

that

> > >nasty naprosyn. He wants to treat it aggressivly. He said I

could

> > >choose to put her on methotrexate or she could take part in a

> > >clinical trial at childrens hospital and put her on Kineret. I

guess

> > >they've been testing it on kids for a while. He said that

enebrel is

> > >totally unavailable. He said that they're building some lab

somewhere

> > >where they would start producing it, but for now it's virtually

> > >nonexistent. I'm thinking of doing the Kineret thing. What do

you

> > >all think? I hear it's worked wonders for adults and there are

no

> > >side effects. Scary stuff. He also said that she can have all

of

> > >her immunizations. Just not to mix the live and dead

vaccines. More

> > >scary stuff. He thinks that she will resond well to the

Kineret and

> > >that she'll be pretty much her old self in about 6 months. I

can't

> > >believe that I have to think about all this stuff. It's mind

> > >numbing. I've never really felt like a grown up before now. I

sure

> > >do lately. I talked to her daddy. He was so sad. I think it's

> > >especially hard for him because he can't even be here right now

and

> > >he feels like he has even less control than I do. The Kineret

is

> > >given in a daily injection. He and I both hate to have to put

her

> > >through that. She's so phobic of needles. I guess it's the

lesser

> > >of 2 evils. Thanks for being there.

> > >Hugs from me Eli and Riley 4 poly

> > >

> > >

> > >

> > >

> > >

> > >

[Guest guest]

Hi Eli,

If you are unsure, you might want to either ask the rheumy which he thinks she should do or get a second opinion from another rheumy. I hope Riley gets well soon. Jona, mom of na 2 poly

skyley8@... wrote: Hi everyone, I'm pretty confused. I almoast wish the Dr. had just prescribed something and not given me a choice. I just want to do whats best for my daughter. I would hate to make the wrong decision and deny her something that could potentially help her. Eli and Riley 4 poly

[Guest guest]

Hi ,

You're so sweet and supportive, thank you so much. I am worried about what might happen to her later in life due to whatever decision I make today. I guess there is no way to know for sure. I think we may pay out of pocket for a 2nd opinion on the drugs. We figure Amgen who manufactures Kineret funds Childrens Hospital in part and we are afraid that the Doc's there might be a bit bias due to that. I really liked her rheumy, but I figure a 2nd opinion can't hurt.

When you say keep a daily journal, you mean of her symptoms right? She hasn't varied much, so I don't keep a daily journal, but I do keep one (just not daily) She's limping a bit more the last 2 days and her knees are a bit more swollen. Maybe I'll jot that down. All I know is that whatever we decide to put her on, we need to do it soon.

Do you know if it's okay to give her Tylenol when she's on Naprosyn? The pharmacist said it is, so I gave her some but I thought I'd ask anyway. She had a low grade fever earlier and seemed to be in more pain today. The Tylenol seemed to help.

How is Tabatha doing now? Since the surgeries and meds and all. I hope to God she's feeling great. I hope to God that one day Riley will be feeling great again too..... Thanks for being there Hugs, Eli and Riley 4 poly

[Guest guest]

Hiya Eli..well ya got the diagnosis finally..at least now there is no more questions or wondering. Now the road begins to find the right cocktail of meds that will work for Riley.

In your post you stated about Riley having arthritis in joints you didn't know existed..I also learned that. Tabitha has it from head to toe. She was Rileys age when she was diagnosed also. The arthritis has done alot of damage to Tabitha. She has had both knees and hips replaced. But she has spunk and compassion.

She has never had Kineret but she has tried lots of other meds. I know that what is good for one..necessarily isn't good for another. Maybe you can ask the rheumy for more information on this medicine. Or look for some information online.

Tabitha has been on Mtx since the age of 5..we tried the shots but she had a bad reaction to those but we switched back to pills and she has been taking them ever since. She gets blood work done every 2 months when she gets her does of Remicade..they have to do the bloodwork to monitor her liver. But so far so good with the mtx...no side effects.

I read your one post where you said you wished the doctor would of just prescribed the medicine..believe me..the doctor was nice to give you the choice..us as parents are afraid of the unknown when it comes to our children..it is understandable how you feel..not knowing what to do about the Kineret(sp)Maybe once your doctor tries it with Riley and it is monitored to see if it is working..just keep an eye on it and if you see anything you don't think is suppose to be happening..tell your doctor and asked for another med to be tried...you have that right..even to this day I still question alot of meds that I agreed for Tab to take and wonder if later on in life it will cause trouble..but I had and do for my child..and hope there are no consequences later on down the road.

Hang in there Eli..I am sure your a terrific mother and you love your child..and be sure to keep a daily journal..something I wish I would of done when this ugly disease awoke in my daughter 13 years ago.

You take care and good luck..

karen(tab17..poly)

From: "skyleysmom"

Reply- Subject: Riley's rheumy visit Date: Fri, 17 May 2002 01:59:36 -0000

Hi everyone, Thank you all soooooo much for all of your posts and prayers and concern etc. Here's the update. Riley has poly. No more question mark. She has it in joints that I didn't even know she had. It's all over her. It's not in her Hips or her back though and I'm hoping that it never gets there. Her rheumy said that it's not systemic. I hope he's right. He seemed like he knew what he was talking about. He prescribed vioxx so I'm getting her off of that nasty naprosyn. He wants to treat it aggressivly. He said I could choose to put her on methotrexate or she could take part in a clinical trial at childrens hospital and put her on Kineret. I guess they've been testing it on kids for a while. He said that enebrel is totally unavailable. He said that they're building some lab somewhere where they would start producing it, but for now it's virtually nonexistent. I'm thinking of doing the Kineret thing. What do you all think? I hear it's worked wonders for adults and there are no side effects. Scary stuff. He also said that she can have all of her immunizations. Just not to mix the live and dead vaccines. More scary stuff. He thinks that she will resond well to the Kineret and that she'll be pretty much her old self in about 6 months. I can't believe that I have to think about all this stuff. It's mind numbing. I've never really felt like a grown up before now. I sure do lately. I talked to her daddy. He was so sad. I think it's especially hard for him because he can't even be here right now and he feels like he has even less control than I do. The Kineret is given in a daily injection. He and I both hate to have to put her through that. She's so phobic of needles. I guess it's the lesser of 2 evils. Thanks for being there. Hugs from me Eli and Riley 4 poly

Chat with friends online, try MSN Messenger: Click Here

[Guest guest]

Hi Eli,

Yes, it is ok to give Riley tylenol with her Naprosyn. Just dose the tylenol according to her weight, and try to give it to her no sooner than 2 hours after the Naprosyn. Hope that helps.

((((((((((hugs to Riley)))))))))))

Tina (s mom)

skyley8@... wrote: Hi , You're so sweet and supportive, thank you so much. I am worried about what might happen to her later in life due to whatever decision I make today. I guess there is no way to know for sure. I think we may pay out of pocket for a 2nd opinion on the drugs. We figure Amgen who manufactures Kineret funds Childrens Hospital in part and we are afraid that the Doc's there might be a bit bias due to that. I really liked her rheumy, but I figure a 2nd opinion can't hurt. When you say keep a daily journal, you mean of her symptoms right? She hasn't varied much, so I don't keep a daily journal, but I do keep one (just not daily) She's limping a bit more the last 2 days and her knees are a bit more swollen. Maybe I'll jot that down. All I know is that whatever we decide to put her on, we need to do it soon. Do you know if it's okay to give her Tylenol when she's on Naprosyn? The pharmacist said it is, so I gave her some but I thought I'd ask anyway. She had a low grade fever earlier and seemed to be in more pain today. The Tylenol seemed to help. How is Tabatha doing now? Since the surgeries and meds and all. I hope to God she's feeling great. I hope to God that one day Riley will be feeling great again too..... Thanks for being there Hugs, Eli and Riley 4 poly

[Guest guest]

Thanks Tina, That's a big help. Have a great day and hugs to you and too!

Eli and Riley

[Guest guest]

Hi there,

If you have any queries about Kineret / Anakinra, you can contact me

directly on jonr@...

I've been on it 8 weeks now and all is going very well.

Regards

Jonny

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Eli,

I would not say Kineret is the lessar of two evils.Methotrexate is a very

good

drug,its been around a long time,the rheumys know how to catch side affects

early.For every person that cant take it I bet theres hundreds who can.There

is

a man on this list named Mr.Rainey he lives in Ireland,hes on Kineret,he

doesnt

post alot but the last time he did the Kineret was helping but the injection

reactions were awful,his leg turns red and hurts for hours.All these drugs

have

side affects,Kinerets no differant,you still run the risk of serious

infection

because of what it does to the immune system.You need to check into the

trial

more,you need to make sure Riley will actually recieve the drug and not a

placebo.In all honesty I am VERY surprised they would allow a child who is

just

being diagnosed and never been on another DMARD to join the trial.The 3

newer

drugs Enbrel ,Remicade and Kineret are usually not for first line

therapy,Enbrel

however has been approved for it though.Do your homework,like I posted

earlier

Methotrexate sounds scary,but in all honesty besides Plaquenil it is the

safest.Good luck on your decision and let us know what you decide.

Becki and 3systemic

W and C Price wrote:

> Dear Eli, This is just my two cents worth, so take it for what it is

> worth--Methotrexate has been around for about twenty years and is

considered

> the gold standard with JRA. Kineret may be a wonderful drug, but the long

> term side effects are totally unknown. Even enbrel is an unknown for long

> term side effects, but people are usually put on it after another DMARD

has

> failed. I am conservative with medicine, so consider the source when I

give

> you my opinion. Our ped. rheumy said that about 75% of the kids are helped

> with methotrexate. The other 25% have to move on to another medicine.

Good

> luck. (n, age 13, systemic)

>

> >From: " skyleysmom " <skyley8@...>

> >Reply-

> >

> >Subject: Riley's rheumy visit

> >Date: Fri, 17 May 2002 01:59:36 -0000

> >

> >Hi everyone, Thank you all soooooo much for all of your posts and

> >prayers and concern etc. Here's the update. Riley has poly. No more

> >question mark. She has it in joints that I didn't even know she

> >had. It's all over her. It's not in her Hips or her back though and

> >I'm hoping that it never gets there. Her rheumy said that it's not

> >systemic. I hope he's right. He seemed like he knew what he was

> >talking about. He prescribed vioxx so I'm getting her off of that

> >nasty naprosyn. He wants to treat it aggressivly. He said I could

> >choose to put her on methotrexate or she could take part in a

> >clinical trial at childrens hospital and put her on Kineret. I guess

> >they've been testing it on kids for a while. He said that enebrel is

> >totally unavailable. He said that they're building some lab somewhere

> >where they would start producing it, but for now it's virtually

> >nonexistent. I'm thinking of doing the Kineret thing. What do you

> >all think? I hear it's worked wonders for adults and there are no

> >side effects. Scary stuff. He also said that she can have all of

> >her immunizations. Just not to mix the live and dead vaccines. More

> >scary stuff. He thinks that she will resond well to the Kineret and

> >that she'll be pretty much her old self in about 6 months. I can't

> >believe that I have to think about all this stuff. It's mind

> >numbing. I've never really felt like a grown up before now. I sure

> >do lately. I talked to her daddy. He was so sad. I think it's

> >especially hard for him because he can't even be here right now and

> >he feels like he has even less control than I do. The Kineret is

> >given in a daily injection. He and I both hate to have to put her

> >through that. She's so phobic of needles. I guess it's the lesser

> >of 2 evils. Thanks for being there.

> >Hugs from me Eli and Riley 4 poly

> >

> >

> >

> >

> >

> >

[Guest guest]

Jona-

I don't think anyone would dispute there are potentially serious side effects from methotrexate, most notably liver and lung problems. On this list, we've even had a child die of complications from mtx (liver problems and macrophage activation syndrome). However, there are potentially serious side effects from every medication. Even seemingly innocuous NSAIDs can result in kidney failure or gastrointestinal bleeding. However, I don't think you can dismiss a drug because a few people have had serious problems with it. With the proper screening, those problems should be preventable. That's why regular blood tests are ordered with anyone taking mtx. MTX has been around a long time and it is used safely and effectively in most patients. Studies have been done on patients taking it up to 20 years. A lot of the newer drugs are promising, but there just isn't as much data available on the potential long-term effects. But there have been deaths from infection reported from drugs like Enbrel and Remicade. Enbrel has been associated with demylenating symptoms (ms). I don't know much about Kineret, but I seriously doubt all the potential side effects are known at this point. My daughter is on mtx and has had no problems with it at all. I feel very comfortable with my decision to put her on that medication, and it has worked very well for her. In making a decision regarding medication, I think you need to do the research. Look at the studies that have been done. Talk to people who have used it. You will find worse-case scenarios, but you can't look at them in a vacuum.

Diane (, 3, pauci)

[Guest guest]

Hi Diane, I'm thinking of putting her on the MTX. The nurse just told me that if it doesn't work we can still try the Kineret study in 4 weeks. I didn't realize that we would still have that opportunity if we needed it. I'm worried about her immune system with the MTX, what with her starting Kindergarten next year and all. Have you not had any problems 's immune system? I definitely don't want to put Riley through the shots if I don't have to. I think it's probably a good idea to try the non invasive drug first to see if it works. Then if we need it the Kineret is still there. The nurse also told me that the deaths from Enbrel and Remicade were in older people with other conditions as well as RA. Not that the drugs didn't have anything to do with it, but there may have been other factors involved. Thank you for helping me with this decision.

Eli and Riley 4 poly

[Guest guest]

Hi Becki,

You're right, knowledge is power. Thank you for sharing your knowledge with me. It's funny, I spoke to the ped rheumy at UCLA today and he said that she sounded like a good candidate for Kineret. I still think I'm gonna try the MTX first. Anyway, he asked me If I was in the medical field. I guess that all of the knowledge that you and everyone else have been sharing combined with my incessant reading is making me come across pretty darn smart!!! Isn't that a hoot!

How sad that children are dying from this drug. How scary to make the choice to put your child on it after hearing that. It must have been so very hard for you as it is for me. I suppose we just have to hope for the best. I for one think that modern medicine is an amazing thing and has done so much for so many people with so many horrible diseases. I hate to put the medication into her beautiful pure little body, but if it's a matter of saving her joints and lessening her pain. I'm just gonna pray for the best.

I'm glad that the MTX has helped , I hope it does Riley. Do they regularly prescribe pred with MTX? I hope gets his Enbrel soon. Give him a hug from Riley.

Eli and Riley 4 poly

[Guest guest]

Hi Eli,

I just wanted to let you know and most will agree.The books say MTX

can start to work in 4 weeks but most rheumys dont look for results for

3 months even then they are usually small,for it took 4. also

doesnt have a comprimized immune system from the MTX or pred,I dont know

if you have to be on the meds for longer than 11 months or some kids are

just more prone to get sick.The bialogicals play a role on the immune system

also,they are supposed to be at more risk for infection also.And yes not

long after I joined this group two children died within one month of each

other.It was almost to much for me to handle,I was learning things I wasnt

ready to learn.The disease and the meds all contribute and play into one

another.All the drugs they use to treat this disease play a role with the

immune system,so they may be treating the jra and something else pop up.I

know you didnt want to hear the Mtx can take longer than 4 weeks,but for

some it must work in 4or they wouldnt say it,I guess mayby for

it took 4 months to get him on the right dose to see improvement.Im in

your shoes also in a way. didnt fully respond to the MTX he still

cant get off steroids,we sent in an application for Enbrel last Dec,well

you know there not letting anyone new have it ,so 3 weeks ago they added

Plaquenil.My PDR says 4-12 weeks to start working but everything I read

says 3-6 months.Im not a very patiant person and this is killing me.s

on 10mg pred and he always starts to have problems at 9mg they are going

to want me to try and lower him for the umpteenth time,and hes going to

flair for the umpteenth time,and have to be raised again.Its a very vicious

cycle,I am glad you and Riley dont have to go through it.Sorry to get off

track.All the meds have risks weather its MTX or Kineret but through lab

work things can be detected early.Sorry to confuse you again but knowledge

is power.

Becki and 3systemic

skyley8@... wrote:

Hi

Diane,

I'm thinking of putting her on the MTX. The nurse just told me that

if it doesn't work we can still try the Kineret study in 4 weeks.

I didn't realize that we would still have that opportunity if we needed

it. I'm worried about her immune system with the MTX, what with her

starting Kindergarten next year and all. Have you not had any problems

's immune system? I definitely don't want to put Riley through

the shots if I don't have to. I think it's probably a good idea to

try the non invasive drug first to see if it works. Then if we need

it the Kineret is still there. The nurse also told me that the deaths

from Enbrel and Remicade were in older people with other conditions as

well as RA. Not that the drugs didn't have anything to do with it,

but there may have been other factors involved. Thank you for helping me

with this decision.

Eli

and Riley 4 poly

[Guest guest]

Diane,

Oh I know all this and I have researched metho and enbrel and I know of all the side effects of both and yes there is a rare chance of certain blood diseases and other things from enbrel but I trust her rheumy and we know what to look for if she is having a bad side effect and thats why she was taken off the metho because it was doing nothing but damage and no good. I trust her rheumy on what he wants to do. I didn't say EVERYONE couln't tolerate the metho. I was just giving all the input I knew of. And I don't know what looking at them in a vacume is??? And I think you need to review my post instead of me doing research cause I know everything about the drugs that needs to be known. Was it wrong for me to post that I read a very sad story that touched me about a man that got lung disease from metho?

Jona and na 2 poly

dbornscheu@... wrote: Jona- I don't think anyone would dispute there are potentially serious side effects from methotrexate, most notably liver and lung problems. On this list, we've even had a child die of complications from mtx (liver problems and macrophage activation syndrome). However, there are potentially serious side effects from every medication. Even seemingly innocuous NSAIDs can result in kidney failure or gastrointestinal bleeding. However, I don't think you can dismiss a drug because a few people have had serious problems with it. With the proper screening, those problems should be preventable. That's why regular blood tests are ordered with anyone taking mtx. MTX has been around a long time and it is used safely and effectively in most patients. Studies have been done on patients taking it up to 20 years. A lot of the newer drugs are promising, but there just isn't as much data available on the potential long-term effects. But there have been deaths from infection reported from drugs like Enbrel and Remicade. Enbrel has been associated with demylenating symptoms (ms). I don't know much about Kineret, but I seriously doubt all the potential side effects are known at this point. My daughter is on mtx and has had no problems with it at all. I feel very comfortable with my decision to put her on that medication, and it has worked very well for her. In making a decision regarding medication, I think you need to do the research. Look at the studies that have been done. Talk to people who have used it. You will find worse-case scenarios, but you can't look at them in a vacuum. Diane (, 3, pauci)