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Re: Ibuprofen isn't cutting it...

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Posted
Posted

,

With five girls I am sure you are very busy. It only takes an NSAID about two

weeks to take effect so it does not sound like it is cutting it.Injecting the

knee sounds like a good idea but now that there may be ankle involvement,where

does that leave it? I understand you not wanting your child on a bunch of meds

due to the fear but in all honesty a lot of the times all those strong meds are

better then the damage that the arthritis is doing.You are not even in a month

of diagnosis so the fear is understandable so my best advise is to keep asking

questions and learn as much as you can about this disease.There is an abundance

of info on the web but things have changed so much over the last decade I would

try and look at things over the last few yrs.

We travel six hours,by choice but is there a hospital closer with Orthopedic

surgeons that could inject your daughters knee? I don't understand the

ultrasound because you can manipulate the knee and bring all of the fluid to the

top. Not saying that an ultra sound is bad just in my sons case it was never

needed.

You really might want to consider talking to your ped rheumy about

Methotrexate. It has been used for decades and is one of the first steps of

standard care. It is a chemo drug but you must understand the doses used to

treat our kids are 100's-1,000's less then someone with cancer. Make sure to get

Ella into a pedOphthalmologist for a slit lamp test if you haven't already.

Pauci kids are at a greater risk for eye inflammation that can have no symptoms

until severe.

Keep us posted and hugs,

Becki and SoJra

________________________________

From: mom2fivegreatgirls <saraha1213@...>

Sent: Tue, February 15, 2011 9:37:02 PM

Subject: Ibuprofen isn't cutting it...

Ella was officially diagnosed with JRA (pauci) on 1/21. The rheumatologist told

us to start giving her 150 mgs of ibuprofen 3 times a day and follow up with her

pediatrician in a month to see how she's doing. He said if, after 2 months, she

was still having problems they would do another ultrasound and if she still had

fluid on her knee, they would do steroid injections. They said they are going

to try to do as much follow up with her pediatrician (who will talk to the

rheumy) as possible to cut down on the amount of traveling we have to do (the

rheumy is a little over 3 hours from here). Well, the ibuprofen isn't working.

Her follow up appointment is on 2/23. I know it takes some time to build up in

her system, etc, but even before we were told to give it to her 3 times a day,

we were giving it to her any time she was hurting which was pretty often...at

least several times a week. She's still waking up almost every day stiff and

limping. She's still in pain almost every day. Today she woke up from her nap

today complaining of her ankle and heel hurting. DH thinks I should push for

the doctor to try a different medicine or do something else. Should I? Or

should I give the ibuprofen another month and see if it helps? I don't want to

put her on a bunch of meds, but I want her to feel better! Maybe I'm just being

impatient. I don't know....

I'm sorry for posting my intro and then disappearing. Things have been crazy

around here. On top of everything with Ella, DH is working overtime a lot

(January-February is always crazy busy for him) and I've had the flu. DD#2 is

having some problems with seizures and headaches (she has epilepsy, but until

recently it was well controlled with meds) so they are doing more tests on her.

Things have just been really busy. I have been reading almost all of the posts

and you guys are in my thoughts and prayers. Thanks for the warm welcome! :)

-Mom to five beautiful little girls!

________________________________________________________________________________\

____

Sucker-punch spam with award-winning protection.

Try the free Beta.

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Posted
Posted

I agree. I have never heard of our ped rheumys doing an ultrasound for a knee.

They just inject it.

But if other joints are popping up, you might talk to your doc about adding mtx.

Mtx can slow or stop the disease in its tracks, and many times put the child

into remission. (n 22, systemic)

Sent from my iPhone

On Feb 15, 2011, at 8:24 PM, Becki Larson <sojramom@...> wrote:

> ,

> With five girls I am sure you are very busy. It only takes an NSAID about two

> weeks to take effect so it does not sound like it is cutting it.Injecting the

> knee sounds like a good idea but now that there may be ankle involvement,where

> does that leave it? I understand you not wanting your child on a bunch of meds

> due to the fear but in all honesty a lot of the times all those strong meds

are

> better then the damage that the arthritis is doing.You are not even in a month

> of diagnosis so the fear is understandable so my best advise is to keep asking

> questions and learn as much as you can about this disease.There is an

abundance

> of info on the web but things have changed so much over the last decade I

would

> try and look at things over the last few yrs.

> We travel six hours,by choice but is there a hospital closer with Orthopedic

> surgeons that could inject your daughters knee? I don't understand the

> ultrasound because you can manipulate the knee and bring all of the fluid to

the

> top. Not saying that an ultra sound is bad just in my sons case it was never

> needed.

> You really might want to consider talking to your ped rheumy about

> Methotrexate. It has been used for decades and is one of the first steps of

> standard care. It is a chemo drug but you must understand the doses used to

> treat our kids are 100's-1,000's less then someone with cancer. Make sure to

get

> Ella into a pedOphthalmologist for a slit lamp test if you haven't already.

> Pauci kids are at a greater risk for eye inflammation that can have no

symptoms

> until severe.

> Keep us posted and hugs,

> Becki and SoJra

>

> ________________________________

> From: mom2fivegreatgirls <saraha1213@...>

>

> Sent: Tue, February 15, 2011 9:37:02 PM

> Subject: Ibuprofen isn't cutting it...

>

> Ella was officially diagnosed with JRA (pauci) on 1/21. The rheumatologist

told

> us to start giving her 150 mgs of ibuprofen 3 times a day and follow up with

her

> pediatrician in a month to see how she's doing. He said if, after 2 months,

she

> was still having problems they would do another ultrasound and if she still

had

> fluid on her knee, they would do steroid injections. They said they are going

> to try to do as much follow up with her pediatrician (who will talk to the

> rheumy) as possible to cut down on the amount of traveling we have to do (the

> rheumy is a little over 3 hours from here). Well, the ibuprofen isn't working.

> Her follow up appointment is on 2/23. I know it takes some time to build up in

> her system, etc, but even before we were told to give it to her 3 times a day,

> we were giving it to her any time she was hurting which was pretty often...at

> least several times a week. She's still waking up almost every day stiff and

> limping. She's still in pain almost every day. Today she woke up from her nap

> today complaining of her ankle and heel hurting. DH thinks I should push for

> the doctor to try a different medicine or do something else. Should I? Or

> should I give the ibuprofen another month and see if it helps? I don't want to

> put her on a bunch of meds, but I want her to feel better! Maybe I'm just

being

> impatient. I don't know....

>

> I'm sorry for posting my intro and then disappearing. Things have been crazy

> around here. On top of everything with Ella, DH is working overtime a lot

> (January-February is always crazy busy for him) and I've had the flu. DD#2 is

> having some problems with seizures and headaches (she has epilepsy, but until

> recently it was well controlled with meds) so they are doing more tests on

her.

> Things have just been really busy. I have been reading almost all of the posts

> and you guys are in my thoughts and prayers. Thanks for the warm welcome! :)

>

>

> -Mom to five beautiful little girls!

>

> __________________________________________________________

> Sucker-punch spam with award-winning protection.

> Try the free Beta.

> http://advision.webevents./mailbeta/features_spam.html

>

>

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Posted
Posted

Thanks for your reply! She has been having pain/stiffness since June. Its

mainly her right knee, but she's had times when her left knee was hurting her as

well...this isn't the first time she's complained of her ankle hurting either.

When the rheumy saw her (on a really good day...), he said he saw no signs of

arthritis on the exam. He ordered a ton of blood work and x-rays. Her sed rate

and c-reactive protein were both elevated and the x-ray showed a " probably small

joint effusion of the right knee " . After that, he sent her for an ultrasound of

her knees which confirmed an effusion of the right knee. After that he called

and said she does have JRA and started her on the ibuprofen.

We live right outside of Charlotte, so there are a lot of specialists near

by...including pediatric orthopedic doctors. There is not a ped rheumatologist

here though. The one she is seeing is in Chapel Hill. From what I'm reading,

doctors seem to treat more aggressively than they seem to be doing with Ella.

I'm going to talk to her pediatrician about everything at her appointment on the

23rd and if I don't get anywhere with that, I'll call the rheumatologist and see

what he says. I just want her feeling better.

She has seen an ophthalmologist. He is familiar with JRA (his wife had/has it)

and said that while everything looks good right now, he wants to see her at

least every 6 months.

> ,

> With five girls I am sure you are very busy. It only takes an NSAID about two

> weeks to take effect so it does not sound like it is cutting it.Injecting the

> knee sounds like a good idea but now that there may be ankle involvement,where

> does that leave it? I understand you not wanting your child on a bunch of meds

> due to the fear but in all honesty a lot of the times all those strong meds

are

> better then the damage that the arthritis is doing.You are not even in a month

> of diagnosis so the fear is understandable so my best advise is to keep asking

> questions and learn as much as you can about this disease.There is an

abundance

> of info on the web but things have changed so much over the last decade I

would

> try and look at things over the last few yrs.

> We travel six hours,by choice but is there a hospital closer with Orthopedic

> surgeons that could inject your daughters knee? I don't understand the

> ultrasound because you can manipulate the knee and bring all of the fluid to

the

> top. Not saying that an ultra sound is bad just in my sons case it was never

> needed.

> You really might want to consider talking to your ped rheumy about

> Methotrexate. It has been used for decades and is one of the first steps of

> standard care. It is a chemo drug but you must understand the doses used to

> treat our kids are 100's-1,000's less then someone with cancer. Make sure to

get

> Ella into a pedOphthalmologist for a slit lamp test if you haven't already.

> Pauci kids are at a greater risk for eye inflammation that can have no

symptoms

> until severe.

> Keep us posted and hugs,

> Becki and SoJra

>

> ________________________________

> From: mom2fivegreatgirls <saraha1213@...>

>

> Sent: Tue, February 15, 2011 9:37:02 PM

> Subject: Ibuprofen isn't cutting it...

>

> Ella was officially diagnosed with JRA (pauci) on 1/21. The rheumatologist

told

> us to start giving her 150 mgs of ibuprofen 3 times a day and follow up with

her

> pediatrician in a month to see how she's doing. He said if, after 2 months,

she

> was still having problems they would do another ultrasound and if she still

had

> fluid on her knee, they would do steroid injections. They said they are going

> to try to do as much follow up with her pediatrician (who will talk to the

> rheumy) as possible to cut down on the amount of traveling we have to do (the

> rheumy is a little over 3 hours from here). Well, the ibuprofen isn't working.

> Her follow up appointment is on 2/23. I know it takes some time to build up in

> her system, etc, but even before we were told to give it to her 3 times a day,

> we were giving it to her any time she was hurting which was pretty often...at

> least several times a week. She's still waking up almost every day stiff and

> limping. She's still in pain almost every day. Today she woke up from her nap

> today complaining of her ankle and heel hurting. DH thinks I should push for

> the doctor to try a different medicine or do something else. Should I? Or

> should I give the ibuprofen another month and see if it helps? I don't want to

> put her on a bunch of meds, but I want her to feel better! Maybe I'm just

being

> impatient. I don't know....

>

> I'm sorry for posting my intro and then disappearing. Things have been crazy

> around here. On top of everything with Ella, DH is working overtime a lot

> (January-February is always crazy busy for him) and I've had the flu. DD#2 is

> having some problems with seizures and headaches (she has epilepsy, but until

> recently it was well controlled with meds) so they are doing more tests on

her.

> Things have just been really busy. I have been reading almost all of the posts

> and you guys are in my thoughts and prayers. Thanks for the warm welcome! :)

>

>

> -Mom to five beautiful little girls!

>

> __________________________________________________________

> Sucker-punch spam with award-winning protection.

> Try the free Beta.

> http://advision.webevents./mailbeta/features_spam.html

>

>

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Posted
Posted

, I am not a doctor, but she should be seen more than every six months for

her eyes. It should be every three months. Is she ANA positive?

And this is only my humble opinion, but I wouldn't bring n to a pediatric

ortho. It is a pediatric rheumy or nothing, and that ped rheumy better do

injections or I will find one who is trained to do them. It is pretty standard

practice.

I brought n to a ped ortho once at the beginning of the disease, and she

went on how n was going to need surgery on her wrists. I walked out in

tears, called my husband, he called a new ped rheumy, and n had her wrists

injected the next day. They were back to normal two days later. That was like

ten years ago.

( n. systemic)

Sent from my iPhone

On Feb 15, 2011, at 8:43 PM, <saraha1213@...> wrote:

> Thanks for your reply! She has been having pain/stiffness since June. Its

mainly her right knee, but she's had times when her left knee was hurting her as

well...this isn't the first time she's complained of her ankle hurting either.

When the rheumy saw her (on a really good day...), he said he saw no signs of

arthritis on the exam. He ordered a ton of blood work and x-rays. Her sed rate

and c-reactive protein were both elevated and the x-ray showed a " probably small

joint effusion of the right knee " . After that, he sent her for an ultrasound of

her knees which confirmed an effusion of the right knee. After that he called

and said she does have JRA and started her on the ibuprofen.

>

> We live right outside of Charlotte, so there are a lot of specialists near

by...including pediatric orthopedic doctors. There is not a ped rheumatologist

here though. The one she is seeing is in Chapel Hill. From what I'm reading,

doctors seem to treat more aggressively than they seem to be doing with Ella.

I'm going to talk to her pediatrician about everything at her appointment on the

23rd and if I don't get anywhere with that, I'll call the rheumatologist and see

what he says. I just want her feeling better.

>

> She has seen an ophthalmologist. He is familiar with JRA (his wife had/has

it) and said that while everything looks good right now, he wants to see her at

least every 6 months.

>

>

>

>

>

>> ,

>> With five girls I am sure you are very busy. It only takes an NSAID about two

>> weeks to take effect so it does not sound like it is cutting it.Injecting the

>> knee sounds like a good idea but now that there may be ankle

involvement,where

>> does that leave it? I understand you not wanting your child on a bunch of

meds

>> due to the fear but in all honesty a lot of the times all those strong meds

are

>> better then the damage that the arthritis is doing.You are not even in a

month

>> of diagnosis so the fear is understandable so my best advise is to keep

asking

>> questions and learn as much as you can about this disease.There is an

abundance

>> of info on the web but things have changed so much over the last decade I

would

>> try and look at things over the last few yrs.

>> We travel six hours,by choice but is there a hospital closer with Orthopedic

>> surgeons that could inject your daughters knee? I don't understand the

>> ultrasound because you can manipulate the knee and bring all of the fluid to

the

>> top. Not saying that an ultra sound is bad just in my sons case it was never

>> needed.

>> You really might want to consider talking to your ped rheumy about

>> Methotrexate. It has been used for decades and is one of the first steps of

>> standard care. It is a chemo drug but you must understand the doses used to

>> treat our kids are 100's-1,000's less then someone with cancer. Make sure to

get

>> Ella into a pedOphthalmologist for a slit lamp test if you haven't already.

>> Pauci kids are at a greater risk for eye inflammation that can have no

symptoms

>> until severe.

>> Keep us posted and hugs,

>> Becki and SoJra

>>

>> ________________________________

>> From: mom2fivegreatgirls <saraha1213@...>

>>

>> Sent: Tue, February 15, 2011 9:37:02 PM

>> Subject: Ibuprofen isn't cutting it...

>>

>> Ella was officially diagnosed with JRA (pauci) on 1/21. The rheumatologist

told

>> us to start giving her 150 mgs of ibuprofen 3 times a day and follow up with

her

>> pediatrician in a month to see how she's doing. He said if, after 2 months,

she

>> was still having problems they would do another ultrasound and if she still

had

>> fluid on her knee, they would do steroid injections. They said they are going

>> to try to do as much follow up with her pediatrician (who will talk to the

>> rheumy) as possible to cut down on the amount of traveling we have to do (the

>> rheumy is a little over 3 hours from here). Well, the ibuprofen isn't

working.

>> Her follow up appointment is on 2/23. I know it takes some time to build up

in

>> her system, etc, but even before we were told to give it to her 3 times a

day,

>> we were giving it to her any time she was hurting which was pretty often...at

>> least several times a week. She's still waking up almost every day stiff and

>> limping. She's still in pain almost every day. Today she woke up from her nap

>> today complaining of her ankle and heel hurting. DH thinks I should push for

>> the doctor to try a different medicine or do something else. Should I? Or

>> should I give the ibuprofen another month and see if it helps? I don't want

to

>> put her on a bunch of meds, but I want her to feel better! Maybe I'm just

being

>> impatient. I don't know....

>>

>> I'm sorry for posting my intro and then disappearing. Things have been crazy

>> around here. On top of everything with Ella, DH is working overtime a lot

>> (January-February is always crazy busy for him) and I've had the flu. DD#2 is

>> having some problems with seizures and headaches (she has epilepsy, but until

>> recently it was well controlled with meds) so they are doing more tests on

her.

>> Things have just been really busy. I have been reading almost all of the

posts

>> and you guys are in my thoughts and prayers. Thanks for the warm welcome! :)

>>

>>

>> -Mom to five beautiful little girls!

>>

>> __________________________________________________________

>> Sucker-punch spam with award-winning protection.

>> Try the free Beta.

>> http://advision.webevents./mailbeta/features_spam.html

>>

>>

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Posted
Posted

No, her ANA was negative. Her rf was negative as well. Everything was

normal/negative except her sed rate and c reactive protein. The ophthalmologist

said if her Ana had been positive he would want to see her more often but since

it was negative every 3

6 months was fine. Is that not right?

Her ped rheumy does do injections. When he mentioned them he said it might be

possible to have them done by an Ortho down here if she needs them rather than

us traveling there...which I totally don't mind doing.

-

On Feb 15, 2011, at 11:55 PM, Price <bc.price@...> wrote:

> , I am not a doctor, but she should be seen more than every six months

for her eyes. It should be every three months. Is she ANA positive?

> And this is only my humble opinion, but I wouldn't bring n to a pediatric

ortho. It is a pediatric rheumy or nothing, and that ped rheumy better do

injections or I will find one who is trained to do them. It is pretty standard

practice.

> I brought n to a ped ortho once at the beginning of the disease, and she

went on how n was going to need surgery on her wrists. I walked out in

tears, called my husband, he called a new ped rheumy, and n had her wrists

injected the next day. They were back to normal two days later. That was like

ten years ago.

> ( n. systemic)

>

> Sent from my iPhone

>

> On Feb 15, 2011, at 8:43 PM, <saraha1213@...> wrote:

>

> > Thanks for your reply! She has been having pain/stiffness since June. Its

mainly her right knee, but she's had times when her left knee was hurting her as

well...this isn't the first time she's complained of her ankle hurting either.

When the rheumy saw her (on a really good day...), he said he saw no signs of

arthritis on the exam. He ordered a ton of blood work and x-rays. Her sed rate

and c-reactive protein were both elevated and the x-ray showed a " probably small

joint effusion of the right knee " . After that, he sent her for an ultrasound of

her knees which confirmed an effusion of the right knee. After that he called

and said she does have JRA and started her on the ibuprofen.

> >

> > We live right outside of Charlotte, so there are a lot of specialists near

by...including pediatric orthopedic doctors. There is not a ped rheumatologist

here though. The one she is seeing is in Chapel Hill. From what I'm reading,

doctors seem to treat more aggressively than they seem to be doing with Ella.

I'm going to talk to her pediatrician about everything at her appointment on the

23rd and if I don't get anywhere with that, I'll call the rheumatologist and see

what he says. I just want her feeling better.

> >

> > She has seen an ophthalmologist. He is familiar with JRA (his wife had/has

it) and said that while everything looks good right now, he wants to see her at

least every 6 months.

> >

> >

> >

> >

> >

> >> ,

> >> With five girls I am sure you are very busy. It only takes an NSAID about

two

> >> weeks to take effect so it does not sound like it is cutting it.Injecting

the

> >> knee sounds like a good idea but now that there may be ankle

involvement,where

> >> does that leave it? I understand you not wanting your child on a bunch of

meds

> >> due to the fear but in all honesty a lot of the times all those strong meds

are

> >> better then the damage that the arthritis is doing.You are not even in a

month

> >> of diagnosis so the fear is understandable so my best advise is to keep

asking

> >> questions and learn as much as you can about this disease.There is an

abundance

> >> of info on the web but things have changed so much over the last decade I

would

> >> try and look at things over the last few yrs.

> >> We travel six hours,by choice but is there a hospital closer with

Orthopedic

> >> surgeons that could inject your daughters knee? I don't understand the

> >> ultrasound because you can manipulate the knee and bring all of the fluid

to the

> >> top. Not saying that an ultra sound is bad just in my sons case it was

never

> >> needed.

> >> You really might want to consider talking to your ped rheumy about

> >> Methotrexate. It has been used for decades and is one of the first steps of

> >> standard care. It is a chemo drug but you must understand the doses used to

> >> treat our kids are 100's-1,000's less then someone with cancer. Make sure

to get

> >> Ella into a pedOphthalmologist for a slit lamp test if you haven't already.

> >> Pauci kids are at a greater risk for eye inflammation that can have no

symptoms

> >> until severe.

> >> Keep us posted and hugs,

> >> Becki and SoJra

> >>

> >> ________________________________

> >> From: mom2fivegreatgirls <saraha1213@...>

> >>

> >> Sent: Tue, February 15, 2011 9:37:02 PM

> >> Subject: Ibuprofen isn't cutting it...

> >>

> >> Ella was officially diagnosed with JRA (pauci) on 1/21. The rheumatologist

told

> >> us to start giving her 150 mgs of ibuprofen 3 times a day and follow up

with her

> >> pediatrician in a month to see how she's doing. He said if, after 2 months,

she

> >> was still having problems they would do another ultrasound and if she still

had

> >> fluid on her knee, they would do steroid injections. They said they are

going

> >> to try to do as much follow up with her pediatrician (who will talk to the

> >> rheumy) as possible to cut down on the amount of traveling we have to do

(the

> >> rheumy is a little over 3 hours from here). Well, the ibuprofen isn't

working.

> >> Her follow up appointment is on 2/23. I know it takes some time to build up

in

> >> her system, etc, but even before we were told to give it to her 3 times a

day,

> >> we were giving it to her any time she was hurting which was pretty

often...at

> >> least several times a week. She's still waking up almost every day stiff

and

> >> limping. She's still in pain almost every day. Today she woke up from her

nap

> >> today complaining of her ankle and heel hurting. DH thinks I should push

for

> >> the doctor to try a different medicine or do something else. Should I? Or

> >> should I give the ibuprofen another month and see if it helps? I don't want

to

> >> put her on a bunch of meds, but I want her to feel better! Maybe I'm just

being

> >> impatient. I don't know....

> >>

> >> I'm sorry for posting my intro and then disappearing. Things have been

crazy

> >> around here. On top of everything with Ella, DH is working overtime a lot

> >> (January-February is always crazy busy for him) and I've had the flu. DD#2

is

> >> having some problems with seizures and headaches (she has epilepsy, but

until

> >> recently it was well controlled with meds) so they are doing more tests on

her.

> >> Things have just been really busy. I have been reading almost all of the

posts

> >> and you guys are in my thoughts and prayers. Thanks for the warm welcome!

:)

> >>

> >>

> >> -Mom to five beautiful little girls!

> >>

> >> __________________________________________________________

> >> Sucker-punch spam with award-winning protection.

> >> Try the free Beta.

> >> http://advision.webevents./mailbeta/features_spam.html

> >>

> >>

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Posted
Posted

I don't know the answer to your eye question with a negative ANA. I am sure

someone will chime in who has more experience with uveitis.

Now I understand your ped ortho situation. I still don't like them. I have seen

too many jra kids cut upon needlessly. It is just a bias of mine.

Sent from my iPhone

On Feb 15, 2011, at 9:06 PM, <saraha1213@...> wrote:

> No, her ANA was negative. Her rf was negative as well. Everything was

normal/negative except her sed rate and c reactive protein. The ophthalmologist

said if her Ana had been positive he would want to see her more often but since

it was negative every 3

> 6 months was fine. Is that not right?

>

> Her ped rheumy does do injections. When he mentioned them he said it might be

possible to have them done by an Ortho down here if she needs them rather than

us traveling there...which I totally don't mind doing.

>

> -

>

> On Feb 15, 2011, at 11:55 PM, Price <bc.price@...> wrote:

>

> > , I am not a doctor, but she should be seen more than every six months

for her eyes. It should be every three months. Is she ANA positive?

> > And this is only my humble opinion, but I wouldn't bring n to a

pediatric ortho. It is a pediatric rheumy or nothing, and that ped rheumy better

do injections or I will find one who is trained to do them. It is pretty

standard practice.

> > I brought n to a ped ortho once at the beginning of the disease, and

she went on how n was going to need surgery on her wrists. I walked out in

tears, called my husband, he called a new ped rheumy, and n had her wrists

injected the next day. They were back to normal two days later. That was like

ten years ago.

> > ( n. systemic)

> >

> > Sent from my iPhone

> >

> > On Feb 15, 2011, at 8:43 PM, <saraha1213@...> wrote:

> >

> > > Thanks for your reply! She has been having pain/stiffness since June. Its

mainly her right knee, but she's had times when her left knee was hurting her as

well...this isn't the first time she's complained of her ankle hurting either.

When the rheumy saw her (on a really good day...), he said he saw no signs of

arthritis on the exam. He ordered a ton of blood work and x-rays. Her sed rate

and c-reactive protein were both elevated and the x-ray showed a " probably small

joint effusion of the right knee " . After that, he sent her for an ultrasound of

her knees which confirmed an effusion of the right knee. After that he called

and said she does have JRA and started her on the ibuprofen.

> > >

> > > We live right outside of Charlotte, so there are a lot of specialists near

by...including pediatric orthopedic doctors. There is not a ped rheumatologist

here though. The one she is seeing is in Chapel Hill. From what I'm reading,

doctors seem to treat more aggressively than they seem to be doing with Ella.

I'm going to talk to her pediatrician about everything at her appointment on the

23rd and if I don't get anywhere with that, I'll call the rheumatologist and see

what he says. I just want her feeling better.

> > >

> > > She has seen an ophthalmologist. He is familiar with JRA (his wife had/has

it) and said that while everything looks good right now, he wants to see her at

least every 6 months.

> > >

> > >

> > >

> > >

> > >

> > >> ,

> > >> With five girls I am sure you are very busy. It only takes an NSAID about

two

> > >> weeks to take effect so it does not sound like it is cutting it.Injecting

the

> > >> knee sounds like a good idea but now that there may be ankle

involvement,where

> > >> does that leave it? I understand you not wanting your child on a bunch of

meds

> > >> due to the fear but in all honesty a lot of the times all those strong

meds are

> > >> better then the damage that the arthritis is doing.You are not even in a

month

> > >> of diagnosis so the fear is understandable so my best advise is to keep

asking

> > >> questions and learn as much as you can about this disease.There is an

abundance

> > >> of info on the web but things have changed so much over the last decade I

would

> > >> try and look at things over the last few yrs.

> > >> We travel six hours,by choice but is there a hospital closer with

Orthopedic

> > >> surgeons that could inject your daughters knee? I don't understand the

> > >> ultrasound because you can manipulate the knee and bring all of the fluid

to the

> > >> top. Not saying that an ultra sound is bad just in my sons case it was

never

> > >> needed.

> > >> You really might want to consider talking to your ped rheumy about

> > >> Methotrexate. It has been used for decades and is one of the first steps

of

> > >> standard care. It is a chemo drug but you must understand the doses used

to

> > >> treat our kids are 100's-1,000's less then someone with cancer. Make sure

to get

> > >> Ella into a pedOphthalmologist for a slit lamp test if you haven't

already.

> > >> Pauci kids are at a greater risk for eye inflammation that can have no

symptoms

> > >> until severe.

> > >> Keep us posted and hugs,

> > >> Becki and SoJra

> > >>

> > >> ________________________________

> > >> From: mom2fivegreatgirls <saraha1213@...>

> > >>

> > >> Sent: Tue, February 15, 2011 9:37:02 PM

> > >> Subject: Ibuprofen isn't cutting it...

> > >>

> > >> Ella was officially diagnosed with JRA (pauci) on 1/21. The

rheumatologist told

> > >> us to start giving her 150 mgs of ibuprofen 3 times a day and follow up

with her

> > >> pediatrician in a month to see how she's doing. He said if, after 2

months, she

> > >> was still having problems they would do another ultrasound and if she

still had

> > >> fluid on her knee, they would do steroid injections. They said they are

going

> > >> to try to do as much follow up with her pediatrician (who will talk to

the

> > >> rheumy) as possible to cut down on the amount of traveling we have to do

(the

> > >> rheumy is a little over 3 hours from here). Well, the ibuprofen isn't

working.

> > >> Her follow up appointment is on 2/23. I know it takes some time to build

up in

> > >> her system, etc, but even before we were told to give it to her 3 times a

day,

> > >> we were giving it to her any time she was hurting which was pretty

often...at

> > >> least several times a week. She's still waking up almost every day stiff

and

> > >> limping. She's still in pain almost every day. Today she woke up from her

nap

> > >> today complaining of her ankle and heel hurting. DH thinks I should push

for

> > >> the doctor to try a different medicine or do something else. Should I? Or

> > >> should I give the ibuprofen another month and see if it helps? I don't

want to

> > >> put her on a bunch of meds, but I want her to feel better! Maybe I'm just

being

> > >> impatient. I don't know....

> > >>

> > >> I'm sorry for posting my intro and then disappearing. Things have been

crazy

> > >> around here. On top of everything with Ella, DH is working overtime a lot

> > >> (January-February is always crazy busy for him) and I've had the flu.

DD#2 is

> > >> having some problems with seizures and headaches (she has epilepsy, but

until

> > >> recently it was well controlled with meds) so they are doing more tests

on her.

> > >> Things have just been really busy. I have been reading almost all of the

posts

> > >> and you guys are in my thoughts and prayers. Thanks for the warm welcome!

:)

> > >>

> > >>

> > >> -Mom to five beautiful little girls!

> > >>

> > >> __________________________________________________________

> > >> Sucker-punch spam with award-winning protection.

> > >> Try the free Beta.

> > >> http://advision.webevents./mailbeta/features_spam.html

> > >>

> > >>

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Posted
Posted

I think our case of injections is different then 's. had his lft

ankle injected twice and both were done at Vanderbilt Children's Hospital in

Nashville. Not only was Dr. Mencio a ped Orthopedist he was the head of Trauma

Orthopedic Surgery at Vanderbilt Hospital. He was amazing and great at what he

did. Our then ped rheumy at Vanderbilt Children's said ankles were hard to do

and needed to be guided by ultrasound. Dr. Mensio said they were easy and that

was not necessary. He left no side effects that can be temporary from the

injections. was booked in an ER room and given conscious sedation, he was

also given an amnesia drug so he wouldn't remember.He was only 3 and 4 at the

time but after the first one he was running through Block Buster Video just a

couple hours later.I am not positive but I don't think even Cincinnati

Childrenspedrheumies do the injections.

This is my opinion from my own experiances but I would not let just any Ortho

inject my child's joints.

Becki and 12 sojra

________________________________

From: Price <bc.price@...>

" " < >

Sent: Tue, February 15, 2011 10:55:57 PM

Subject: Re: Ibuprofen isn't cutting it...

, I am not a doctor, but she should be seen more than every six months for

her eyes. It should be every three months. Is she ANA positive?

And this is only my humble opinion, but I wouldn't bring n to a pediatric

ortho. It is a pediatric rheumy or nothing, and that ped rheumy better do

injections or I will find one who is trained to do them. It is pretty standard

practice.

I brought n to a pedortho once at the beginning of the disease, and she

went on how n was going to need surgery on her wrists. I walked out in

tears, called my husband, he called a new ped rheumy, and n had her wrists

injected the next day. They were back to normal two days later. That was like

ten years ago.

( n. systemic)

Sent from my iPhone

On Feb 15, 2011, at 8:43 PM, <saraha1213@...> wrote:

> Thanks for your reply! She has been having pain/stiffness since June. Its

>mainly her right knee, but she's had times when her left knee was hurting her

as

>well...this isn't the first time she's complained of her ankle hurting either.

>When the rheumy saw her (on a really good day...), he said he saw no signs of

>arthritis on the exam. He ordered a ton of blood work and x-rays. Her sed

rate

>and c-reactive protein were both elevated and the x-ray showed a " probably

small

>joint effusion of the right knee " . After that, he sent her for an ultrasound

of

>her knees which confirmed an effusion of the right knee. After that he called

>and said she does have JRA and started her on the ibuprofen.

>

>

> We live right outside of Charlotte, so there are a lot of specialists near

>by...including pediatric orthopedic doctors. There is not a pedrheumatologist

>here though. The one she is seeing is in Chapel Hill. From what I'm reading,

>doctors seem to treat more aggressively than they seem to be doing with Ella.

>I'm going to talk to her pediatrician about everything at her appointment on

the

>23rd and if I don't get anywhere with that, I'll call the rheumatologist and

see

>what he says. I just want her feeling better.

>

>

> She has seen an ophthalmologist. He is familiar with JRA (his wife had/has

it)

>and said that while everything looks good right now, he wants to see her at

>least every 6 months.

>

>

>

>

>

>

>> ,

>> With five girls I am sure you are very busy. It only takes an NSAID about two

>> weeks to take effect so it does not sound like it is cutting it.Injecting the

>> knee sounds like a good idea but now that there may be ankle

involvement,where

>

>> does that leave it? I understand you not wanting your child on a bunch of

meds

>> due to the fear but in all honesty a lot of the times all those strong meds

are

>>

>> better then the damage that the arthritis is doing.You are not even in a

month

>

>> of diagnosis so the fear is understandable so my best advise is to keep

asking

>

>> questions and learn as much as you can about this disease.There is an

abundance

>>

>> of info on the web but things have changed so much over the last decade I

would

>>

>> try and look at things over the last few yrs.

>> We travel six hours,by choice but is there a hospital closer with Orthopedic

>> surgeons that could inject your daughters knee? I don't understand the

>> ultrasound because you can manipulate the knee and bring all of the fluid to

>>the

>>

>> top. Not saying that an ultra sound is bad just in my sons case it was never

>> needed.

>> You really might want to consider talking to your ped rheumy about

>> Methotrexate. It has been used for decades and is one of the first steps of

>> standard care. It is a chemo drug but you must understand the doses used to

>> treat our kids are 100's-1,000's less then someone with cancer. Make sure to

>>get

>>

>> Ella into a pedOphthalmologist for a slit lamp test if you haven't already.

>> Pauci kids are at a greater risk for eye inflammation that can have no

symptoms

>>

>> until severe.

>> Keep us posted and hugs,

>> Becki and SoJra

>>

>> ________________________________

>> From: mom2fivegreatgirls <saraha1213@...>

>>

>> Sent: Tue, February 15, 2011 9:37:02 PM

>> Subject: Ibuprofen isn't cutting it...

>>

>> Ella was officially diagnosed with JRA (pauci) on 1/21. The rheumatologist

told

>>

>> us to start giving her 150 mgs of ibuprofen 3 times a day and follow up with

>>her

>>

>> pediatrician in a month to see how she's doing. He said if, after 2 months,

she

>>

>> was still having problems they would do another ultrasound and if she still

had

>>

>> fluid on her knee, they would do steroid injections. They said they are going

>> to try to do as much follow up with her pediatrician (who will talk to the

>> rheumy) as possible to cut down on the amount of traveling we have to do (the

>> rheumy is a little over 3 hours from here). Well, the ibuprofen isn't

working.

>

>> Her follow up appointment is on 2/23. I know it takes some time to build up

in

>

>> her system, etc, but even before we were told to give it to her 3 times a

day,

>

>> we were giving it to her any time she was hurting which was pretty often...at

>> least several times a week. She's still waking up almost every day stiff and

>> limping. She's still in pain almost every day. Today she woke up from her nap

>> today complaining of her ankle and heel hurting. DH thinks I should push for

>> the doctor to try a different medicine or do something else. Should I? Or

>> should I give the ibuprofen another month and see if it helps? I don't want

to

>

>> put her on a bunch of meds, but I want her to feel better! Maybe I'm just

being

>>

>> impatient. I don't know....

>>

>> I'm sorry for posting my intro and then disappearing. Things have been crazy

>> around here. On top of everything with Ella, DH is working overtime a lot

>> (January-February is always crazy busy for him) and I've had the flu. DD#2 is

>> having some problems with seizures and headaches (she has epilepsy, but until

>> recently it was well controlled with meds) so they are doing more tests on

her.

>>

>> Things have just been really busy. I have been reading almost all of the

posts

>

>> and you guys are in my thoughts and prayers. Thanks for the warm welcome! :)

>>

>>

>> -Mom to five beautiful little girls!

>>

>> __________________________________________________________

>> Sucker-punch spam with award-winning protection.

>> Try the free Beta.

>> http://advision.webevents./mailbeta/features_spam.html

>>

>>

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Posted
Posted

You can always have the ortho consult with the rheumy and they can not force you

to do anything.ANA negative is a good thing but I do not know if it can

change.RF negative is VERY common in JRA so that is a good thing also.RF + means

juvenile onset RA which is not the same as JRA.

________________________________

From: Price <bc.price@...>

" " < >

Sent: Tue, February 15, 2011 11:10:53 PM

Subject: Re: Ibuprofen isn't cutting it...

I don't know the answer to your eye question with a negative ANA. I am sure

someone will chime in who has more experience with uveitis.

Now I understand your ped ortho situation. I still don't like them. I have seen

too many jra kids cut upon needlessly. It is just a bias of mine.

Sent from my iPhone

On Feb 15, 2011, at 9:06 PM, <saraha1213@...> wrote:

> No, her ANA was negative. Her rf was negative as well. Everything was

>normal/negative except her sed rate and c reactive protein. The ophthalmologist

>said if her Ana had been positive he would want to see her more often but since

>it was negative every 3

> 6 months was fine. Is that not right?

>

> Her ped rheumy does do injections. When he mentioned them he said it might be

>possible to have them done by an Ortho down here if she needs them rather than

>us traveling there...which I totally don't mind doing.

>

>

> -

>

> On Feb 15, 2011, at 11:55 PM, Price <bc.price@...> wrote:

>

> > , I am not a doctor, but she should be seen more than every six months

>for her eyes. It should be every three months. Is she ANA positive?

> > And this is only my humble opinion, but I wouldn't bring n to a

>pediatric ortho. It is a pediatric rheumy or nothing, and that ped rheumy

better

>do injections or I will find one who is trained to do them. It is pretty

>standard practice.

> > I brought n to a ped ortho once at the beginning of the disease, and

she

>went on how n was going to need surgery on her wrists. I walked out in

>tears, called my husband, he called a new ped rheumy, and n had her wrists

>injected the next day. They were back to normal two days later. That was like

>ten years ago.

> > ( n. systemic)

> >

> > Sent from my iPhone

> >

> > On Feb 15, 2011, at 8:43 PM, <saraha1213@...> wrote:

> >

> > > Thanks for your reply! She has been having pain/stiffness since June. Its

>mainly her right knee, but she's had times when her left knee was hurting her

as

>well...this isn't the first time she's complained of her ankle hurting either.

>When the rheumy saw her (on a really good day...), he said he saw no signs of

>arthritis on the exam. He ordered a ton of blood work and x-rays. Her sed rate

>and c-reactive protein were both elevated and the x-ray showed a " probably

small

>joint effusion of the right knee " . After that, he sent her for an ultrasound of

>her knees which confirmed an effusion of the right knee. After that he called

>and said she does have JRA and started her on the ibuprofen.

>

> > >

> > > We live right outside of Charlotte, so there are a lot of specialists near

>by...including pediatric orthopedic doctors. There is not a ped rheumatologist

>here though. The one she is seeing is in Chapel Hill. From what I'm reading,

>doctors seem to treat more aggressively than they seem to be doing with Ella.

>I'm going to talk to her pediatrician about everything at her appointment on

the

>23rd and if I don't get anywhere with that, I'll call the rheumatologist and

see

>what he says. I just want her feeling better.

>

> > >

> > > She has seen an ophthalmologist. He is familiar with JRA (his wife had/has

>it) and said that while everything looks good right now, he wants to see her at

>least every 6 months.

>

> > >

> > >

> > >

> > >

> > >

> > >> ,

> > >> With five girls I am sure you are very busy. It only takes an NSAID about

>two

>

> > >> weeks to take effect so it does not sound like it is cutting it.Injecting

>the

>

> > >> knee sounds like a good idea but now that there may be ankle

>involvement,where

>

> > >> does that leave it? I understand you not wanting your child on a bunch of

>meds

>

> > >> due to the fear but in all honesty a lot of the times all those strong

>meds are

>

> > >> better then the damage that the arthritis is doing.You are not even in a

>month

>

> > >> of diagnosis so the fear is understandable so my best advise is to keep

>asking

>

> > >> questions and learn as much as you can about this disease.There is an

>abundance

>

> > >> of info on the web but things have changed so much over the last decade I

>would

>

> > >> try and look at things over the last few yrs.

> > >> We travel six hours,by choice but is there a hospital closer with

>Orthopedic

>

> > >> surgeons that could inject your daughters knee? I don't understand the

> > >> ultrasound because you can manipulate the knee and bring all of the fluid

>to the

>

> > >> top. Not saying that an ultra sound is bad just in my sons case it was

>never

>

> > >> needed.

> > >> You really might want to consider talking to your ped rheumy about

> > >> Methotrexate. It has been used for decades and is one of the first steps

>of

>

> > >> standard care. It is a chemo drug but you must understand the doses used

>to

>

> > >> treat our kids are 100's-1,000's less then someone with cancer. Make sure

>to get

>

> > >> Ella into a pedOphthalmologist for a slit lamp test if you haven't

>already.

>

> > >> Pauci kids are at a greater risk for eye inflammation that can have no

>symptoms

>

> > >> until severe.

> > >> Keep us posted and hugs,

> > >> Becki and SoJra

> > >>

> > >> ________________________________

> > >> From: mom2fivegreatgirls <saraha1213@...>

> > >>

> > >> Sent: Tue, February 15, 2011 9:37:02 PM

> > >> Subject: Ibuprofen isn't cutting it...

> > >>

> > >> Ella was officially diagnosed with JRA (pauci) on 1/21. The

rheumatologist

>told

>

> > >> us to start giving her 150 mgs of ibuprofen 3 times a day and follow up

>with her

>

> > >> pediatrician in a month to see how she's doing. He said if, after 2

>months, she

>

> > >> was still having problems they would do another ultrasound and if she

>still had

>

> > >> fluid on her knee, they would do steroid injections. They said they are

>going

>

> > >> to try to do as much follow up with her pediatrician (who will talk to

the

>

> > >> rheumy) as possible to cut down on the amount of traveling we have to do

>(the

>

> > >> rheumy is a little over 3 hours from here). Well, the ibuprofen isn't

>working.

>

> > >> Her follow up appointment is on 2/23. I know it takes some time to build

>up in

>

> > >> her system, etc, but even before we were told to give it to her 3 times a

>day,

>

> > >> we were giving it to her any time she was hurting which was pretty

>often...at

>

> > >> least several times a week. She's still waking up almost every day stiff

>and

>

> > >> limping. She's still in pain almost every day. Today she woke up from her

>nap

>

> > >> today complaining of her ankle and heel hurting. DH thinks I should push

>for

>

> > >> the doctor to try a different medicine or do something else. Should I? Or

> > >> should I give the ibuprofen another month and see if it helps? I don't

>want to

>

> > >> put her on a bunch of meds, but I want her to feel better! Maybe I'm just

>being

>

> > >> impatient. I don't know....

> > >>

> > >> I'm sorry for posting my intro and then disappearing. Things have been

>crazy

>

> > >> around here. On top of everything with Ella, DH is working overtime a lot

> > >> (January-February is always crazy busy for him) and I've had the flu.

DD#2

>is

>

> > >> having some problems with seizures and headaches (she has epilepsy, but

>until

>

> > >> recently it was well controlled with meds) so they are doing more tests

on

>her.

>

> > >> Things have just been really busy. I have been reading almost all of the

>posts

>

> > >> and you guys are in my thoughts and prayers. Thanks for the warm welcome!

>:)

> > >>

> > >>

> > >> -Mom to five beautiful little girls!

> > >>

> > >> __________________________________________________________

> > >> Sucker-punch spam with award-winning protection.

> > >> Try the free Beta.

> > >> http://advision.webevents./mailbeta/features_spam.html

> > >>

> > >>

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Posted
Posted

(poly/psoriatic) is ANA- and we were told every six months was the

standard.

, I know that with 5 travel can be an issue; I also have a large family.

But if you can manage the travel I would see the pediatric rheumatologist rather

than go through the pediatrician at least until the arthritis is under control.

The ped rheum is the one who is trained to detect even the most subtle signs of

swelling, signs that could easily be overlooked by someone with less training.

And the fact is that many, many physicians go through medical school without

ever dealing with JA anywhere other than in a textbook.

I hope things are settling down with your other daughter.

Liz

From: [mailto: ] On Behalf Of

Price

Sent: Wednesday, February 16, 2011 12:11 AM

Subject: Re: Ibuprofen isn't cutting it...

I don't know the answer to your eye question with a negative ANA. I am sure

someone will chime in who has more experience with uveitis.

Now I understand your ped ortho situation. I still don't like them. I have seen

too many jra kids cut upon needlessly. It is just a bias of mine.

Sent from my iPhone

On Feb 15, 2011, at 9:06 PM, <saraha1213@...

<mailto:saraha1213%40gmail.com> > wrote:

> No, her ANA was negative. Her rf was negative as well. Everything was

normal/negative except her sed rate and c reactive protein. The ophthalmologist

said if her Ana had been positive he would want to see her more often but since

it was negative every 3

> 6 months was fine. Is that not right?

>

> Her ped rheumy does do injections. When he mentioned them he said it might be

possible to have them done by an Ortho down here if she needs them rather than

us traveling there...which I totally don't mind doing.

>

> -

>

> On Feb 15, 2011, at 11:55 PM, Price <bc.price@...

<mailto:bc.price%40comcast.net> > wrote:

>

> > , I am not a doctor, but she should be seen more than every six months

for her eyes. It should be every three months. Is she ANA positive?

> > And this is only my humble opinion, but I wouldn't bring n to a

pediatric ortho. It is a pediatric rheumy or nothing, and that ped rheumy better

do injections or I will find one who is trained to do them. It is pretty

standard practice.

> > I brought n to a ped ortho once at the beginning of the disease, and

she went on how n was going to need surgery on her wrists. I walked out in

tears, called my husband, he called a new ped rheumy, and n had her wrists

injected the next day. They were back to normal two days later. That was like

ten years ago.

> > ( n. systemic)

> >

> > Sent from my iPhone

> >

> > On Feb 15, 2011, at 8:43 PM, <saraha1213@...

<mailto:saraha1213%40gmail.com> > wrote:

> >

> > > Thanks for your reply! She has been having pain/stiffness since June. Its

mainly her right knee, but she's had times when her left knee was hurting her as

well...this isn't the first time she's complained of her ankle hurting either.

When the rheumy saw her (on a really good day...), he said he saw no signs of

arthritis on the exam. He ordered a ton of blood work and x-rays. Her sed rate

and c-reactive protein were both elevated and the x-ray showed a " probably small

joint effusion of the right knee " . After that, he sent her for an ultrasound of

her knees which confirmed an effusion of the right knee. After that he called

and said she does have JRA and started her on the ibuprofen.

> > >

> > > We live right outside of Charlotte, so there are a lot of specialists near

by...including pediatric orthopedic doctors. There is not a ped rheumatologist

here though. The one she is seeing is in Chapel Hill. From what I'm reading,

doctors seem to treat more aggressively than they seem to be doing with Ella.

I'm going to talk to her pediatrician about everything at her appointment on the

23rd and if I don't get anywhere with that, I'll call the rheumatologist and see

what he says. I just want her feeling better.

> > >

> > > She has seen an ophthalmologist. He is familiar with JRA (his wife had/has

it) and said that while everything looks good right now, he wants to see her at

least every 6 months.

> > >

> > >

> > >

> > >

> > >

> > >> ,

> > >> With five girls I am sure you are very busy. It only takes an NSAID about

two

> > >> weeks to take effect so it does not sound like it is cutting it.Injecting

the

> > >> knee sounds like a good idea but now that there may be ankle

involvement,where

> > >> does that leave it? I understand you not wanting your child on a bunch of

meds

> > >> due to the fear but in all honesty a lot of the times all those strong

meds are

> > >> better then the damage that the arthritis is doing.You are not even in a

month

> > >> of diagnosis so the fear is understandable so my best advise is to keep

asking

> > >> questions and learn as much as you can about this disease.There is an

abundance

> > >> of info on the web but things have changed so much over the last decade I

would

> > >> try and look at things over the last few yrs.

> > >> We travel six hours,by choice but is there a hospital closer with

Orthopedic

> > >> surgeons that could inject your daughters knee? I don't understand the

> > >> ultrasound because you can manipulate the knee and bring all of the fluid

to the

> > >> top. Not saying that an ultra sound is bad just in my sons case it was

never

> > >> needed.

> > >> You really might want to consider talking to your ped rheumy about

> > >> Methotrexate. It has been used for decades and is one of the first steps

of

> > >> standard care. It is a chemo drug but you must understand the doses used

to

> > >> treat our kids are 100's-1,000's less then someone with cancer. Make sure

to get

> > >> Ella into a pedOphthalmologist for a slit lamp test if you haven't

already.

> > >> Pauci kids are at a greater risk for eye inflammation that can have no

symptoms

> > >> until severe.

> > >> Keep us posted and hugs,

> > >> Becki and SoJra

> > >>

> > >> ________________________________

> > >> From: mom2fivegreatgirls <saraha1213@...

<mailto:saraha1213%40gmail.com> >

> > >> <mailto: %40>

> > >> Sent: Tue, February 15, 2011 9:37:02 PM

> > >> Subject: Ibuprofen isn't cutting it...

> > >>

> > >> Ella was officially diagnosed with JRA (pauci) on 1/21. The

rheumatologist told

> > >> us to start giving her 150 mgs of ibuprofen 3 times a day and follow up

with her

> > >> pediatrician in a month to see how she's doing. He said if, after 2

months, she

> > >> was still having problems they would do another ultrasound and if she

still had

> > >> fluid on her knee, they would do steroid injections. They said they are

going

> > >> to try to do as much follow up with her pediatrician (who will talk to

the

> > >> rheumy) as possible to cut down on the amount of traveling we have to do

(the

> > >> rheumy is a little over 3 hours from here). Well, the ibuprofen isn't

working.

> > >> Her follow up appointment is on 2/23. I know it takes some time to build

up in

> > >> her system, etc, but even before we were told to give it to her 3 times a

day,

> > >> we were giving it to her any time she was hurting which was pretty

often...at

> > >> least several times a week. She's still waking up almost every day stiff

and

> > >> limping. She's still in pain almost every day. Today she woke up from her

nap

> > >> today complaining of her ankle and heel hurting. DH thinks I should push

for

> > >> the doctor to try a different medicine or do something else. Should I? Or

> > >> should I give the ibuprofen another month and see if it helps? I don't

want to

> > >> put her on a bunch of meds, but I want her to feel better! Maybe I'm just

being

> > >> impatient. I don't know....

> > >>

> > >> I'm sorry for posting my intro and then disappearing. Things have been

crazy

> > >> around here. On top of everything with Ella, DH is working overtime a lot

> > >> (January-February is always crazy busy for him) and I've had the flu.

DD#2 is

> > >> having some problems with seizures and headaches (she has epilepsy, but

until

> > >> recently it was well controlled with meds) so they are doing more tests

on her.

> > >> Things have just been really busy. I have been reading almost all of the

posts

> > >> and you guys are in my thoughts and prayers. Thanks for the warm welcome!

:)

> > >>

> > >>

> > >> -Mom to five beautiful little girls!

> > >>

> > >> __________________________________________________________

> > >> Sucker-punch spam with award-winning protection.

> > >> Try the free Beta.

> > >> http://advision.webevents./mailbeta/features_spam.html

> > >>

> > >>

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Posted
Posted

I also have to add to be very careful with any NSAID given long term. My

daughter developed stomach ulcers as a result of NSAIDs and will never be

allowed to take them for the rest of her life as a result. Due to her being

high risk for injuries due to her hypermobility, it is a huge challenge. The

advice the others gave is excellent as well.

Beth & Hannah, 14, OA, HMJS, Asthma, allergies

Life is one grand, sweet song, so start the music. ~ Reagan

________________________________

From: Becki Larson <sojramom@...>

Sent: Wed, February 16, 2011 12:02:17 AM

Subject: Re: Ibuprofen isn't cutting it...

You can always have the ortho consult with the rheumy and they can not force you

to do anything.ANA negative is a good thing but I do not know if it can

change.RF negative is VERY common in JRA so that is a good thing also.RF + means

juvenile onset RA which is not the same as JRA.

________________________________

From: Price <bc.price@...>

" " < >

Sent: Tue, February 15, 2011 11:10:53 PM

Subject: Re: Ibuprofen isn't cutting it...

I don't know the answer to your eye question with a negative ANA. I am sure

someone will chime in who has more experience with uveitis.

Now I understand your ped ortho situation. I still don't like them. I have seen

too many jra kids cut upon needlessly. It is just a bias of mine.

Sent from my iPhone

On Feb 15, 2011, at 9:06 PM, <saraha1213@...> wrote:

> No, her ANA was negative. Her rf was negative as well. Everything was

>normal/negative except her sed rate and c reactive protein. The ophthalmologist

>said if her Ana had been positive he would want to see her more often but since

>it was negative every 3

> 6 months was fine. Is that not right?

>

> Her ped rheumy does do injections. When he mentioned them he said it might be

>possible to have them done by an Ortho down here if she needs them rather than

>us traveling there...which I totally don't mind doing.

>

>

> -

>

> On Feb 15, 2011, at 11:55 PM, Price <bc.price@...> wrote:

>

> > , I am not a doctor, but she should be seen more than every six months

>for her eyes. It should be every three months. Is she ANA positive?

> > And this is only my humble opinion, but I wouldn't bring n to a

>pediatric ortho. It is a pediatric rheumy or nothing, and that ped rheumy

better

>

>do injections or I will find one who is trained to do them. It is pretty

>standard practice.

> > I brought n to a ped ortho once at the beginning of the disease, and

she

>

>went on how n was going to need surgery on her wrists. I walked out in

>tears, called my husband, he called a new ped rheumy, and n had her wrists

>injected the next day. They were back to normal two days later. That was like

>ten years ago.

> > ( n. systemic)

> >

> > Sent from my iPhone

> >

> > On Feb 15, 2011, at 8:43 PM, <saraha1213@...> wrote:

> >

> > > Thanks for your reply! She has been having pain/stiffness since June. Its

>mainly her right knee, but she's had times when her left knee was hurting her

as

>

>well...this isn't the first time she's complained of her ankle hurting either.

>When the rheumy saw her (on a really good day...), he said he saw no signs of

>arthritis on the exam. He ordered a ton of blood work and x-rays. Her sed rate

>and c-reactive protein were both elevated and the x-ray showed a " probably

small

>

>joint effusion of the right knee " . After that, he sent her for an ultrasound of

>her knees which confirmed an effusion of the right knee. After that he called

>and said she does have JRA and started her on the ibuprofen.

>

> > >

> > > We live right outside of Charlotte, so there are a lot of specialists near

>by...including pediatric orthopedic doctors. There is not a ped rheumatologist

>here though. The one she is seeing is in Chapel Hill. From what I'm reading,

>doctors seem to treat more aggressively than they seem to be doing with Ella.

>I'm going to talk to her pediatrician about everything at her appointment on

the

>

>23rd and if I don't get anywhere with that, I'll call the rheumatologist and

see

>

>what he says. I just want her feeling better.

>

> > >

> > > She has seen an ophthalmologist. He is familiar with JRA (his wife had/has

>it) and said that while everything looks good right now, he wants to see her at

>least every 6 months.

>

> > >

> > >

> > >

> > >

> > >

> > >> ,

> > >> With five girls I am sure you are very busy. It only takes an NSAID about

>two

>

> > >> weeks to take effect so it does not sound like it is cutting it.Injecting

>the

>

> > >> knee sounds like a good idea but now that there may be ankle

>involvement,where

>

> > >> does that leave it? I understand you not wanting your child on a bunch of

>meds

>

> > >> due to the fear but in all honesty a lot of the times all those strong

>meds are

>

> > >> better then the damage that the arthritis is doing.You are not even in a

>month

>

> > >> of diagnosis so the fear is understandable so my best advise is to keep

>asking

>

> > >> questions and learn as much as you can about this disease.There is an

>abundance

>

> > >> of info on the web but things have changed so much over the last decade I

>would

>

> > >> try and look at things over the last few yrs.

> > >> We travel six hours,by choice but is there a hospital closer with

>Orthopedic

>

> > >> surgeons that could inject your daughters knee? I don't understand the

> > >> ultrasound because you can manipulate the knee and bring all of the fluid

>to the

>

> > >> top. Not saying that an ultra sound is bad just in my sons case it was

>never

>

> > >> needed.

> > >> You really might want to consider talking to your ped rheumy about

> > >> Methotrexate. It has been used for decades and is one of the first steps

>of

>

> > >> standard care. It is a chemo drug but you must understand the doses used

>to

>

> > >> treat our kids are 100's-1,000's less then someone with cancer. Make sure

>to get

>

> > >> Ella into a pedOphthalmologist for a slit lamp test if you haven't

>already.

>

> > >> Pauci kids are at a greater risk for eye inflammation that can have no

>symptoms

>

> > >> until severe.

> > >> Keep us posted and hugs,

> > >> Becki and SoJra

> > >>

> > >> ________________________________

> > >> From: mom2fivegreatgirls <saraha1213@...>

> > >>

> > >> Sent: Tue, February 15, 2011 9:37:02 PM

> > >> Subject: Ibuprofen isn't cutting it...

> > >>

> > >> Ella was officially diagnosed with JRA (pauci) on 1/21. The

rheumatologist

>

>told

>

> > >> us to start giving her 150 mgs of ibuprofen 3 times a day and follow up

>with her

>

> > >> pediatrician in a month to see how she's doing. He said if, after 2

>months, she

>

> > >> was still having problems they would do another ultrasound and if she

>still had

>

> > >> fluid on her knee, they would do steroid injections. They said they are

>going

>

> > >> to try to do as much follow up with her pediatrician (who will talk to

the

>

>

> > >> rheumy) as possible to cut down on the amount of traveling we have to do

>(the

>

> > >> rheumy is a little over 3 hours from here). Well, the ibuprofen isn't

>working.

>

> > >> Her follow up appointment is on 2/23. I know it takes some time to build

>up in

>

> > >> her system, etc, but even before we were told to give it to her 3 times a

>day,

>

> > >> we were giving it to her any time she was hurting which was pretty

>often...at

>

> > >> least several times a week. She's still waking up almost every day stiff

>and

>

> > >> limping. She's still in pain almost every day. Today she woke up from her

>nap

>

> > >> today complaining of her ankle and heel hurting. DH thinks I should push

>for

>

> > >> the doctor to try a different medicine or do something else. Should I? Or

> > >> should I give the ibuprofen another month and see if it helps? I don't

>want to

>

> > >> put her on a bunch of meds, but I want her to feel better! Maybe I'm just

>being

>

> > >> impatient. I don't know....

> > >>

> > >> I'm sorry for posting my intro and then disappearing. Things have been

>crazy

>

> > >> around here. On top of everything with Ella, DH is working overtime a lot

> > >> (January-February is always crazy busy for him) and I've had the flu.

DD#2

>

>is

>

> > >> having some problems with seizures and headaches (she has epilepsy, but

>until

>

> > >> recently it was well controlled with meds) so they are doing more tests

on

>

>her.

>

> > >> Things have just been really busy. I have been reading almost all of the

>posts

>

> > >> and you guys are in my thoughts and prayers. Thanks for the warm welcome!

>:)

> > >>

> > >>

> > >> -Mom to five beautiful little girls!

> > >>

> > >> __________________________________________________________

> > >> Sucker-punch spam with award-winning protection.

> > >> Try the free Beta.

> > >> http://advision.webevents./mailbeta/features_spam.html

> > >>

> > >>

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Posted
Posted

Hi, I haven't responded on here before but I read all of the posts. My name is

Ashleigh and my daughter Eleanor was diagnosed with systemic juvenile arthritis

last june at the age of 3.5. It sounds to me like maybe they need to raise her

dose? My daughter is 21 pounds and she takes 400mg of ibuprofen, that was every

8 eight hours but we ended up switching her to naproxen during the day which

controls her pain MUCH better than the ibuprofen, she still takes ibuprofen at

night to control fevers though! Our pediatrician switched my daughter and her

rheumatologist wasn't even aware that they made a liquid form of naproxen, so

maybe you could just ask about it.

I am the mother of a little girl,

I rock her... She rocks my world!

________________________________

From: mom2fivegreatgirls <saraha1213@...>

Sent: Tue, February 15, 2011 10:37:02 PM

Subject: Ibuprofen isn't cutting it...

Ella was officially diagnosed with JRA (pauci) on 1/21. The rheumatologist told

us to start giving her 150 mgs of ibuprofen 3 times a day and follow up with her

pediatrician in a month to see how she's doing. He said if, after 2 months, she

was still having problems they would do another ultrasound and if she still had

fluid on her knee, they would do steroid injections. They said they are going

to try to do as much follow up with her pediatrician (who will talk to the

rheumy) as possible to cut down on the amount of traveling we have to do (the

rheumy is a little over 3 hours from here). Well, the ibuprofen isn't working.

Her follow up appointment is on 2/23. I know it takes some time to build up in

her system, etc, but even before we were told to give it to her 3 times a day,

we were giving it to her any time she was hurting which was pretty often...at

least several times a week. She's still waking up almost every day stiff and

limping. She's still in pain almost every day. Today she woke up from her nap

today complaining of her ankle and heel hurting. DH thinks I should push for

the doctor to try a different medicine or do something else. Should I? Or

should I give the ibuprofen another month and see if it helps? I don't want to

put her on a bunch of meds, but I want her to feel better! Maybe I'm just being

impatient. I don't know....

I'm sorry for posting my intro and then disappearing. Things have been crazy

around here. On top of everything with Ella, DH is working overtime a lot

(January-February is always crazy busy for him) and I've had the flu. DD#2 is

having some problems with seizures and headaches (she has epilepsy, but until

recently it was well controlled with meds) so they are doing more tests on her.

Things have just been really busy. I have been reading almost all of the posts

and you guys are in my thoughts and prayers. Thanks for the warm welcome! :)

-Mom to five beautiful little girls!

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Posted
Posted

Hi . I agree with Beth – I hate long term use of NSAID’s. We had a

girl on the list with bleeding ulcers from long term use. I too think moving on

to a DMARD would be a good idea, with mtx being a good start. If your daughter

has been having issues since June with no real improvement it is time to try

something new, especially if she has been on ibuprofen all this time. Many drs

now start out aggressively when treating JA – I hope that is your drs plan. I

believe you said she sees a ped rheumy – is this dr affiliated with a

university? My son’s first ped rheumy is at Duke now and I thought she was

wonderful when caring for my son. I am sure it may be far from Charlotte but it

is just a suggestion.

Keep us updated when you can – with five girls you sure have your hands full!

Michele ( 23, spondy)

From: [mailto: ] On Behalf Of

Beth Yohnk

Sent: Wednesday, February 16, 2011 6:51 AM

Subject: Re: Ibuprofen isn't cutting it...

I also have to add to be very careful with any NSAID given long term. My

daughter developed stomach ulcers as a result of NSAIDs and will never be

allowed to take them for the rest of her life as a result. Due to her being

high risk for injuries due to her hypermobility, it is a huge challenge. The

advice the others gave is excellent as well.

Beth & Hannah, 14, OA, HMJS, Asthma, allergies

Life is one grand, sweet song, so start the music. ~ Reagan

________________________________

From: Becki Larson <sojramom@...<mailto:sojramom%40>>

<mailto: %40>

Sent: Wed, February 16, 2011 12:02:17 AM

Subject: Re: Ibuprofen isn't cutting it...

You can always have the ortho consult with the rheumy and they can not force you

to do anything.ANA negative is a good thing but I do not know if it can

change.RF negative is VERY common in JRA so that is a good thing also.RF + means

juvenile onset RA which is not the same as JRA.

________________________________

From: Price <bc.price@...<mailto:bc.price%40comcast.net>>

" <mailto: %40> "

< <mailto: %40>>

Sent: Tue, February 15, 2011 11:10:53 PM

Subject: Re: Ibuprofen isn't cutting it...

I don't know the answer to your eye question with a negative ANA. I am sure

someone will chime in who has more experience with uveitis.

Now I understand your ped ortho situation. I still don't like them. I have seen

too many jra kids cut upon needlessly. It is just a bias of mine.

Sent from my iPhone

On Feb 15, 2011, at 9:06 PM,

<saraha1213@...<mailto:saraha1213%40gmail.com>> wrote:

> No, her ANA was negative. Her rf was negative as well. Everything was

>normal/negative except her sed rate and c reactive protein. The ophthalmologist

>said if her Ana had been positive he would want to see her more often but since

>it was negative every 3

> 6 months was fine. Is that not right?

>

> Her ped rheumy does do injections. When he mentioned them he said it might be

>possible to have them done by an Ortho down here if she needs them rather than

>us traveling there...which I totally don't mind doing.

>

>

> -

>

> On Feb 15, 2011, at 11:55 PM, Price

<bc.price@...<mailto:bc.price%40comcast.net>> wrote:

>

> > , I am not a doctor, but she should be seen more than every six months

>for her eyes. It should be every three months. Is she ANA positive?

> > And this is only my humble opinion, but I wouldn't bring n to a

>pediatric ortho. It is a pediatric rheumy or nothing, and that ped rheumy

better

>

>do injections or I will find one who is trained to do them. It is pretty

>standard practice.

> > I brought n to a ped ortho once at the beginning of the disease, and

she

>

>went on how n was going to need surgery on her wrists. I walked out in

>tears, called my husband, he called a new ped rheumy, and n had her wrists

>injected the next day. They were back to normal two days later. That was like

>ten years ago.

> > ( n. systemic)

> >

> > Sent from my iPhone

> >

> > On Feb 15, 2011, at 8:43 PM,

<saraha1213@...<mailto:saraha1213%40gmail.com>> wrote:

> >

> > > Thanks for your reply! She has been having pain/stiffness since June. Its

>mainly her right knee, but she's had times when her left knee was hurting her

as

>

>well...this isn't the first time she's complained of her ankle hurting either.

>When the rheumy saw her (on a really good day...), he said he saw no signs of

>arthritis on the exam. He ordered a ton of blood work and x-rays. Her sed rate

>and c-reactive protein were both elevated and the x-ray showed a " probably

small

>

>joint effusion of the right knee " . After that, he sent her for an ultrasound of

>her knees which confirmed an effusion of the right knee. After that he called

>and said she does have JRA and started her on the ibuprofen.

>

> > >

> > > We live right outside of Charlotte, so there are a lot of specialists near

>by...including pediatric orthopedic doctors. There is not a ped rheumatologist

>here though. The one she is seeing is in Chapel Hill. From what I'm reading,

>doctors seem to treat more aggressively than they seem to be doing with Ella.

>I'm going to talk to her pediatrician about everything at her appointment on

the

>

>23rd and if I don't get anywhere with that, I'll call the rheumatologist and

see

>

>what he says. I just want her feeling better.

>

> > >

> > > She has seen an ophthalmologist. He is familiar with JRA (his wife had/has

>it) and said that while everything looks good right now, he wants to see her at

>least every 6 months.

>

> > >

> > >

> > >

> > >

> > >

> > >> ,

> > >> With five girls I am sure you are very busy. It only takes an NSAID about

>two

>

> > >> weeks to take effect so it does not sound like it is cutting it.Injecting

>the

>

> > >> knee sounds like a good idea but now that there may be ankle

>involvement,where

>

> > >> does that leave it? I understand you not wanting your child on a bunch of

>meds

>

> > >> due to the fear but in all honesty a lot of the times all those strong

>meds are

>

> > >> better then the damage that the arthritis is doing.You are not even in a

>month

>

> > >> of diagnosis so the fear is understandable so my best advise is to keep

>asking

>

> > >> questions and learn as much as you can about this disease.There is an

>abundance

>

> > >> of info on the web but things have changed so much over the last decade I

>would

>

> > >> try and look at things over the last few yrs.

> > >> We travel six hours,by choice but is there a hospital closer with

>Orthopedic

>

> > >> surgeons that could inject your daughters knee? I don't understand the

> > >> ultrasound because you can manipulate the knee and bring all of the fluid

>to the

>

> > >> top. Not saying that an ultra sound is bad just in my sons case it was

>never

>

> > >> needed.

> > >> You really might want to consider talking to your ped rheumy about

> > >> Methotrexate. It has been used for decades and is one of the first steps

>of

>

> > >> standard care. It is a chemo drug but you must understand the doses used

>to

>

> > >> treat our kids are 100's-1,000's less then someone with cancer. Make sure

>to get

>

> > >> Ella into a pedOphthalmologist for a slit lamp test if you haven't

>already.

>

> > >> Pauci kids are at a greater risk for eye inflammation that can have no

>symptoms

>

> > >> until severe.

> > >> Keep us posted and hugs,

> > >> Becki and SoJra

> > >>

> > >> ________________________________

> > >> From: mom2fivegreatgirls

<saraha1213@...<mailto:saraha1213%40gmail.com>>

> > >> <mailto: %40>

> > >> Sent: Tue, February 15, 2011 9:37:02 PM

> > >> Subject: Ibuprofen isn't cutting it...

> > >>

> > >> Ella was officially diagnosed with JRA (pauci) on 1/21. The

rheumatologist

>

>told

>

> > >> us to start giving her 150 mgs of ibuprofen 3 times a day and follow up

>with her

>

> > >> pediatrician in a month to see how she's doing. He said if, after 2

>months, she

>

> > >> was still having problems they would do another ultrasound and if she

>still had

>

> > >> fluid on her knee, they would do steroid injections. They said they are

>going

>

> > >> to try to do as much follow up with her pediatrician (who will talk to

the

>

>

> > >> rheumy) as possible to cut down on the amount of traveling we have to do

>(the

>

> > >> rheumy is a little over 3 hours from here). Well, the ibuprofen isn't

>working.

>

> > >> Her follow up appointment is on 2/23. I know it takes some time to build

>up in

>

> > >> her system, etc, but even before we were told to give it to her 3 times a

>day,

>

> > >> we were giving it to her any time she was hurting which was pretty

>often...at

>

> > >> least several times a week. She's still waking up almost every day stiff

>and

>

> > >> limping. She's still in pain almost every day. Today she woke up from her

>nap

>

> > >> today complaining of her ankle and heel hurting. DH thinks I should push

>for

>

> > >> the doctor to try a different medicine or do something else. Should I? Or

> > >> should I give the ibuprofen another month and see if it helps? I don't

>want to

>

> > >> put her on a bunch of meds, but I want her to feel better! Maybe I'm just

>being

>

> > >> impatient. I don't know....

> > >>

> > >> I'm sorry for posting my intro and then disappearing. Things have been

>crazy

>

> > >> around here. On top of everything with Ella, DH is working overtime a lot

> > >> (January-February is always crazy busy for him) and I've had the flu.

DD#2

>

>is

>

> > >> having some problems with seizures and headaches (she has epilepsy, but

>until

>

> > >> recently it was well controlled with meds) so they are doing more tests

on

>

>her.

>

> > >> Things have just been really busy. I have been reading almost all of the

>posts

>

> > >> and you guys are in my thoughts and prayers. Thanks for the warm welcome!

>:)

> > >>

> > >>

> > >> -Mom to five beautiful little girls!

> > >>

> > >> __________________________________________________________

> > >> Sucker-punch spam with award-winning protection.

> > >> Try the free Beta.

> > >> http://advision.webevents./mailbeta/features_spam.html

> > >>

> > >>

Link to comment
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Guest guest

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Posted
Posted

Personally I wouldn't wait...I'd talk to both the pedi & the rheumy before the

next appointment...which is almost a week away. I would push to be seen by the

rheumy as soon as possible...I got on the cancel list for ours for the first

available appointment and was seen much sooner that way. Every day that goes by

not only is there the possibility of more joint damage..our poor kids live

thinking being in pain is normal.

With my , we only saw the knee but over time he now has his toes, both

knees, both hips , both shoulders, both elbows and possibly some fingers

involved. We could not see the other joints but his rheumy felt them.

I too would push for the next step of treatment, MTX...we started injections

about two months after he was diagnosed (two years in April). Then about 8 weeks

later added Enbrel which has been working wonders for him.

As for the eyes, is ANA+ and has a few other eye/vision issues so we see

the pedi ophthalmologist every three months.

It's hard at first...but now that we are almost two years in and he is

responding so well to treatment...we are settling into this new normal.

All the best,

& , 7, poly...SPD...nystagmus...

Sent from my iPhone

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Posted
Posted

Hi ladies,

What do you consider " long term " use of NSAIDs? has been on some kind of

NSAID since Oct 2009 - so going on 15 months I guess. Since we switched to

Mobic the Rheumy AND Ped told us we could discontinue the tummy protector, and

doesn't really have stomach pain, except occasionally it does crop up and

is helped by eating, which makes me worry about ulcers. is on Kineret,

Methotrexate, and Mobic, and recently weaned from prednisone. We are now

weaning Methotrexate, and I was surprised when the Rheumy chose to weant this

first, rather than discontinue the NSAID. I questioned it, and she said that

the Mtx was causing more side effects than the Mobic so she wanted to do it in

that order. She says she usually weans in this order: pred, mtx, then NSAID.

It seems there isn't a " general " mode of treatment when it comes to this, as I

see many kids being weaned from the NSAID before the Mtx. Thoughts?

nn (, 9, systemic)

> > >

> > > > Thanks for your reply! She has been having pain/stiffness since June.

Its

> >mainly her right knee, but she's had times when her left knee was hurting her

as

> >

> >well...this isn't the first time she's complained of her ankle hurting

either.

> >When the rheumy saw her (on a really good day...), he said he saw no signs of

> >arthritis on the exam. He ordered a ton of blood work and x-rays. Her sed

rate

> >and c-reactive protein were both elevated and the x-ray showed a " probably

small

> >

> >joint effusion of the right knee " . After that, he sent her for an ultrasound

of

>

> >her knees which confirmed an effusion of the right knee. After that he called

> >and said she does have JRA and started her on the ibuprofen.

> >

> > > >

> > > > We live right outside of Charlotte, so there are a lot of specialists

near

>

> >by...including pediatric orthopedic doctors. There is not a ped

rheumatologist

> >here though. The one she is seeing is in Chapel Hill. From what I'm reading,

> >doctors seem to treat more aggressively than they seem to be doing with Ella.

> >I'm going to talk to her pediatrician about everything at her appointment on

the

> >

> >23rd and if I don't get anywhere with that, I'll call the rheumatologist and

see

> >

> >what he says. I just want her feeling better.

> >

> > > >

> > > > She has seen an ophthalmologist. He is familiar with JRA (his wife

had/has

>

> >it) and said that while everything looks good right now, he wants to see her

at

>

> >least every 6 months.

> >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >> ,

> > > >> With five girls I am sure you are very busy. It only takes an NSAID

about

>

> >two

> >

> > > >> weeks to take effect so it does not sound like it is cutting

it.Injecting

>

> >the

> >

> > > >> knee sounds like a good idea but now that there may be ankle

> >involvement,where

> >

> > > >> does that leave it? I understand you not wanting your child on a bunch

of

>

> >meds

> >

> > > >> due to the fear but in all honesty a lot of the times all those strong

> >meds are

> >

> > > >> better then the damage that the arthritis is doing.You are not even in

a

> >month

> >

> > > >> of diagnosis so the fear is understandable so my best advise is to keep

> >asking

> >

> > > >> questions and learn as much as you can about this disease.There is an

> >abundance

> >

> > > >> of info on the web but things have changed so much over the last decade

I

>

> >would

> >

> > > >> try and look at things over the last few yrs.

> > > >> We travel six hours,by choice but is there a hospital closer with

> >Orthopedic

> >

> > > >> surgeons that could inject your daughters knee? I don't understand the

> > > >> ultrasound because you can manipulate the knee and bring all of the

fluid

>

> >to the

> >

> > > >> top. Not saying that an ultra sound is bad just in my sons case it was

> >never

> >

> > > >> needed.

> > > >> You really might want to consider talking to your ped rheumy about

> > > >> Methotrexate. It has been used for decades and is one of the first

steps

> >of

> >

> > > >> standard care. It is a chemo drug but you must understand the doses

used

> >to

> >

> > > >> treat our kids are 100's-1,000's less then someone with cancer. Make

sure

>

> >to get

> >

> > > >> Ella into a pedOphthalmologist for a slit lamp test if you haven't

> >already.

> >

> > > >> Pauci kids are at a greater risk for eye inflammation that can have no

> >symptoms

> >

> > > >> until severe.

> > > >> Keep us posted and hugs,

> > > >> Becki and SoJra

> > > >>

> > > >> ________________________________

> > > >> From: mom2fivegreatgirls

<saraha1213@...<mailto:saraha1213%40gmail.com>>

> > > >> <mailto: %40>

> > > >> Sent: Tue, February 15, 2011 9:37:02 PM

> > > >> Subject: Ibuprofen isn't cutting it...

> > > >>

> > > >> Ella was officially diagnosed with JRA (pauci) on 1/21. The

rheumatologist

> >

> >told

> >

> > > >> us to start giving her 150 mgs of ibuprofen 3 times a day and follow up

> >with her

> >

> > > >> pediatrician in a month to see how she's doing. He said if, after 2

> >months, she

> >

> > > >> was still having problems they would do another ultrasound and if she

> >still had

> >

> > > >> fluid on her knee, they would do steroid injections. They said they are

> >going

> >

> > > >> to try to do as much follow up with her pediatrician (who will talk to

the

> >

> >

> > > >> rheumy) as possible to cut down on the amount of traveling we have to

do

> >(the

> >

> > > >> rheumy is a little over 3 hours from here). Well, the ibuprofen isn't

> >working.

> >

> > > >> Her follow up appointment is on 2/23. I know it takes some time to

build

> >up in

> >

> > > >> her system, etc, but even before we were told to give it to her 3 times

a

>

> >day,

> >

> > > >> we were giving it to her any time she was hurting which was pretty

> >often...at

> >

> > > >> least several times a week. She's still waking up almost every day

stiff

> >and

> >

> > > >> limping. She's still in pain almost every day. Today she woke up from

her

>

> >nap

> >

> > > >> today complaining of her ankle and heel hurting. DH thinks I should

push

> >for

> >

> > > >> the doctor to try a different medicine or do something else. Should I?

Or

>

> > > >> should I give the ibuprofen another month and see if it helps? I don't

> >want to

> >

> > > >> put her on a bunch of meds, but I want her to feel better! Maybe I'm

just

>

> >being

> >

> > > >> impatient. I don't know....

> > > >>

> > > >> I'm sorry for posting my intro and then disappearing. Things have been

> >crazy

> >

> > > >> around here. On top of everything with Ella, DH is working overtime a

lot

>

> > > >> (January-February is always crazy busy for him) and I've had the flu.

DD#2

> >

> >is

> >

> > > >> having some problems with seizures and headaches (she has epilepsy, but

> >until

> >

> > > >> recently it was well controlled with meds) so they are doing more tests

on

> >

> >her.

> >

> > > >> Things have just been really busy. I have been reading almost all of

the

> >posts

> >

> > > >> and you guys are in my thoughts and prayers. Thanks for the warm

welcome!

>

> >:)

> > > >>

> > > >>

> > > >> -Mom to five beautiful little girls!

> > > >>

> > > >> __________________________________________________________

> > > >> Sucker-punch spam with award-winning protection.

> > > >> Try the free Beta.

> > > >> http://advision.webevents./mailbeta/features_spam.html

> > > >>

> > > >>

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Posted
Posted

She sees Dr. Stein at UNC in Chapel Hill. Durham is actually closer than Chapel

Hill. And I don't mind traveling. I'd travel across the country regularly if

it would help her feel better!

On Feb 16, 2011, at 10:31 AM, Tepper, Michele wrote:

> Hi . I agree with Beth – I hate long term use of NSAID’s. We had a girl

on the list with bleeding ulcers from long term use. I too think moving on to a

DMARD would be a good idea, with mtx being a good start. If your daughter has

been having issues since June with no real improvement it is time to try

something new, especially if she has been on ibuprofen all this time. Many drs

now start out aggressively when treating JA – I hope that is your drs plan. I

believe you said she sees a ped rheumy – is this dr affiliated with a

university? My son’s first ped rheumy is at Duke now and I thought she was

wonderful when caring for my son. I am sure it may be far from Charlotte but it

is just a suggestion.

> Keep us updated when you can – with five girls you sure have your hands full!

Michele ( 23, spondy)

>

> From: [mailto: ] On Behalf Of

Beth Yohnk

> Sent: Wednesday, February 16, 2011 6:51 AM

>

> Subject: Re: Ibuprofen isn't cutting it...

>

>

>

> I also have to add to be very careful with any NSAID given long term. My

> daughter developed stomach ulcers as a result of NSAIDs and will never be

> allowed to take them for the rest of her life as a result. Due to her being

> high risk for injuries due to her hypermobility, it is a huge challenge. The

> advice the others gave is excellent as well.

> Beth & Hannah, 14, OA, HMJS, Asthma, allergies

>

> Life is one grand, sweet song, so start the music. ~ Reagan

>

> ________________________________

> From: Becki Larson <sojramom@...<mailto:sojramom%40>>

> <mailto: %40>

> Sent: Wed, February 16, 2011 12:02:17 AM

> Subject: Re: Ibuprofen isn't cutting it...

>

> You can always have the ortho consult with the rheumy and they can not force

you

>

> to do anything.ANA negative is a good thing but I do not know if it can

> change.RF negative is VERY common in JRA so that is a good thing also.RF +

means

>

> juvenile onset RA which is not the same as JRA.

>

> ________________________________

> From: Price <bc.price@...<mailto:bc.price%40comcast.net>>

> " <mailto: %40> "

< <mailto: %40>>

> Sent: Tue, February 15, 2011 11:10:53 PM

> Subject: Re: Ibuprofen isn't cutting it...

>

> I don't know the answer to your eye question with a negative ANA. I am sure

> someone will chime in who has more experience with uveitis.

>

> Now I understand your ped ortho situation. I still don't like them. I have

seen

> too many jra kids cut upon needlessly. It is just a bias of mine.

>

> Sent from my iPhone

>

> On Feb 15, 2011, at 9:06 PM,

<saraha1213@...<mailto:saraha1213%40gmail.com>> wrote:

>

> > No, her ANA was negative. Her rf was negative as well. Everything was

> >normal/negative except her sed rate and c reactive protein. The

ophthalmologist

>

> >said if her Ana had been positive he would want to see her more often but

since

>

> >it was negative every 3

> > 6 months was fine. Is that not right?

> >

> > Her ped rheumy does do injections. When he mentioned them he said it might

be

> >possible to have them done by an Ortho down here if she needs them rather

than

> >us traveling there...which I totally don't mind doing.

> >

> >

> > -

> >

> > On Feb 15, 2011, at 11:55 PM, Price

<bc.price@...<mailto:bc.price%40comcast.net>> wrote:

> >

> > > , I am not a doctor, but she should be seen more than every six

months

> >for her eyes. It should be every three months. Is she ANA positive?

> > > And this is only my humble opinion, but I wouldn't bring n to a

> >pediatric ortho. It is a pediatric rheumy or nothing, and that ped rheumy

better

> >

> >do injections or I will find one who is trained to do them. It is pretty

> >standard practice.

> > > I brought n to a ped ortho once at the beginning of the disease, and

she

> >

> >went on how n was going to need surgery on her wrists. I walked out in

> >tears, called my husband, he called a new ped rheumy, and n had her

wrists

>

> >injected the next day. They were back to normal two days later. That was like

> >ten years ago.

> > > ( n. systemic)

> > >

> > > Sent from my iPhone

> > >

> > > On Feb 15, 2011, at 8:43 PM,

<saraha1213@...<mailto:saraha1213%40gmail.com>> wrote:

> > >

> > > > Thanks for your reply! She has been having pain/stiffness since June.

Its

> >mainly her right knee, but she's had times when her left knee was hurting her

as

> >

> >well...this isn't the first time she's complained of her ankle hurting

either.

> >When the rheumy saw her (on a really good day...), he said he saw no signs of

> >arthritis on the exam. He ordered a ton of blood work and x-rays. Her sed

rate

> >and c-reactive protein were both elevated and the x-ray showed a " probably

small

> >

> >joint effusion of the right knee " . After that, he sent her for an ultrasound

of

>

> >her knees which confirmed an effusion of the right knee. After that he called

> >and said she does have JRA and started her on the ibuprofen.

> >

> > > >

> > > > We live right outside of Charlotte, so there are a lot of specialists

near

>

> >by...including pediatric orthopedic doctors. There is not a ped

rheumatologist

> >here though. The one she is seeing is in Chapel Hill. From what I'm reading,

> >doctors seem to treat more aggressively than they seem to be doing with Ella.

> >I'm going to talk to her pediatrician about everything at her appointment on

the

> >

> >23rd and if I don't get anywhere with that, I'll call the rheumatologist and

see

> >

> >what he says. I just want her feeling better.

> >

> > > >

> > > > She has seen an ophthalmologist. He is familiar with JRA (his wife

had/has

>

> >it) and said that while everything looks good right now, he wants to see her

at

>

> >least every 6 months.

> >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >> ,

> > > >> With five girls I am sure you are very busy. It only takes an NSAID

about

>

> >two

> >

> > > >> weeks to take effect so it does not sound like it is cutting

it.Injecting

>

> >the

> >

> > > >> knee sounds like a good idea but now that there may be ankle

> >involvement,where

> >

> > > >> does that leave it? I understand you not wanting your child on a bunch

of

>

> >meds

> >

> > > >> due to the fear but in all honesty a lot of the times all those strong

> >meds are

> >

> > > >> better then the damage that the arthritis is doing.You are not even in

a

> >month

> >

> > > >> of diagnosis so the fear is understandable so my best advise is to keep

> >asking

> >

> > > >> questions and learn as much as you can about this disease.There is an

> >abundance

> >

> > > >> of info on the web but things have changed so much over the last decade

I

>

> >would

> >

> > > >> try and look at things over the last few yrs.

> > > >> We travel six hours,by choice but is there a hospital closer with

> >Orthopedic

> >

> > > >> surgeons that could inject your daughters knee? I don't understand the

> > > >> ultrasound because you can manipulate the knee and bring all of the

fluid

>

> >to the

> >

> > > >> top. Not saying that an ultra sound is bad just in my sons case it was

> >never

> >

> > > >> needed.

> > > >> You really might want to consider talking to your ped rheumy about

> > > >> Methotrexate. It has been used for decades and is one of the first

steps

> >of

> >

> > > >> standard care. It is a chemo drug but you must understand the doses

used

> >to

> >

> > > >> treat our kids are 100's-1,000's less then someone with cancer. Make

sure

>

> >to get

> >

> > > >> Ella into a pedOphthalmologist for a slit lamp test if you haven't

> >already.

> >

> > > >> Pauci kids are at a greater risk for eye inflammation that can have no

> >symptoms

> >

> > > >> until severe.

> > > >> Keep us posted and hugs,

> > > >> Becki and SoJra

> > > >>

> > > >> ________________________________

> > > >> From: mom2fivegreatgirls

<saraha1213@...<mailto:saraha1213%40gmail.com>>

> > > >> <mailto: %40>

> > > >> Sent: Tue, February 15, 2011 9:37:02 PM

> > > >> Subject: Ibuprofen isn't cutting it...

> > > >>

> > > >> Ella was officially diagnosed with JRA (pauci) on 1/21. The

rheumatologist

> >

> >told

> >

> > > >> us to start giving her 150 mgs of ibuprofen 3 times a day and follow up

> >with her

> >

> > > >> pediatrician in a month to see how she's doing. He said if, after 2

> >months, she

> >

> > > >> was still having problems they would do another ultrasound and if she

> >still had

> >

> > > >> fluid on her knee, they would do steroid injections. They said they are

> >going

> >

> > > >> to try to do as much follow up with her pediatrician (who will talk to

the

> >

> >

> > > >> rheumy) as possible to cut down on the amount of traveling we have to

do

> >(the

> >

> > > >> rheumy is a little over 3 hours from here). Well, the ibuprofen isn't

> >working.

> >

> > > >> Her follow up appointment is on 2/23. I know it takes some time to

build

> >up in

> >

> > > >> her system, etc, but even before we were told to give it to her 3 times

a

>

> >day,

> >

> > > >> we were giving it to her any time she was hurting which was pretty

> >often...at

> >

> > > >> least several times a week. She's still waking up almost every day

stiff

> >and

> >

> > > >> limping. She's still in pain almost every day. Today she woke up from

her

>

> >nap

> >

> > > >> today complaining of her ankle and heel hurting. DH thinks I should

push

> >for

> >

> > > >> the doctor to try a different medicine or do something else. Should I?

Or

>

> > > >> should I give the ibuprofen another month and see if it helps? I don't

> >want to

> >

> > > >> put her on a bunch of meds, but I want her to feel better! Maybe I'm

just

>

> >being

> >

> > > >> impatient. I don't know....

> > > >>

> > > >> I'm sorry for posting my intro and then disappearing. Things have been

> >crazy

> >

> > > >> around here. On top of everything with Ella, DH is working overtime a

lot

>

> > > >> (January-February is always crazy busy for him) and I've had the flu.

DD#2

> >

> >is

> >

> > > >> having some problems with seizures and headaches (she has epilepsy, but

> >until

> >

> > > >> recently it was well controlled with meds) so they are doing more tests

on

> >

> >her.

> >

> > > >> Things have just been really busy. I have been reading almost all of

the

> >posts

> >

> > > >> and you guys are in my thoughts and prayers. Thanks for the warm

welcome!

>

> >:)

> > > >>

> > > >>

> > > >> -Mom to five beautiful little girls!

> > > >>

> > > >> __________________________________________________________

> > > >> Sucker-punch spam with award-winning protection.

> > > >> Try the free Beta.

> > > >> http://advision.webevents./mailbeta/features_spam.html

> > > >>

> > > >>

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Posted
Posted

Thanks. I actually called the rheumy and left a message with the nurse this

morning. Hopefully I'll hear something back soon.

On Feb 16, 2011, at 10:34 AM, ahna08@... wrote:

> Personally I wouldn't wait...I'd talk to both the pedi & the rheumy before the

next appointment...which is almost a week away. I would push to be seen by the

rheumy as soon as possible...I got on the cancel list for ours for the first

available appointment and was seen much sooner that way. Every day that goes by

not only is there the possibility of more joint damage..our poor kids live

thinking being in pain is normal.

>

> With my , we only saw the knee but over time he now has his toes, both

knees, both hips , both shoulders, both elbows and possibly some fingers

involved. We could not see the other joints but his rheumy felt them.

>

> I too would push for the next step of treatment, MTX...we started injections

about two months after he was diagnosed (two years in April). Then about 8 weeks

later added Enbrel which has been working wonders for him.

>

> As for the eyes, is ANA+ and has a few other eye/vision issues so we see

the pedi ophthalmologist every three months.

>

> It's hard at first...but now that we are almost two years in and he is

responding so well to treatment...we are settling into this new normal.

>

> All the best,

> & , 7, poly...SPD...nystagmus...

>

> Sent from my iPhone

>

>

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Posted
Posted

, Hi, and sorry you're daughters are not doing well right now. Hang in

there. I know you've gotten a lot of posts about moving onto Methotrexate,

which seems like a good next step to me too. But, just in case you stay on the

NSAID too, I wanted to mention that my daughter was on ibuprofen for a long time

as her NSAID (is also on Kineret, Methotrexate, and was on prednisone). Anyway,

ibuprofen was not our first choice. She was started on Indocin, then Naproxen,

but reacted to both, so we ended up on Ibuprofen for a long while and it's a

drag to have to dose it so often per day. We switched to Mobic a while back and

that's just once a day and I *think* it might be a tiny bit easier on the

stomach but I could be wrong because it's a strong NSAID. Good luck with the

appointments.

nn (, 9, systemic)

>

> > Personally I wouldn't wait...I'd talk to both the pedi & the rheumy before

the next appointment...which is almost a week away. I would push to be seen by

the rheumy as soon as possible...I got on the cancel list for ours for the first

available appointment and was seen much sooner that way. Every day that goes by

not only is there the possibility of more joint damage..our poor kids live

thinking being in pain is normal.

> >

> > With my , we only saw the knee but over time he now has his toes, both

knees, both hips , both shoulders, both elbows and possibly some fingers

involved. We could not see the other joints but his rheumy felt them.

> >

> > I too would push for the next step of treatment, MTX...we started injections

about two months after he was diagnosed (two years in April). Then about 8 weeks

later added Enbrel which has been working wonders for him.

> >

> > As for the eyes, is ANA+ and has a few other eye/vision issues so we

see the pedi ophthalmologist every three months.

> >

> > It's hard at first...but now that we are almost two years in and he is

responding so well to treatment...we are settling into this new normal.

> >

> > All the best,

> > & , 7, poly...SPD...nystagmus...

> >

> > Sent from my iPhone

> >

> >

>

>

>

>

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Posted
Posted

,

Jaye is also on Meloxicam or Mobic and has been on it for quite some

time, I think two years but not sure but she has been on a NSAID since we began

the travels down the road with Arthur. She has been on Ibuprophin, Celebrex,

Indomethicin, Naproxin and now on the Meloxicam along with Hydroxichloroquine,

Methotrexate & now three months into Enbrel. Jaye takes folic acid and I

am not even sure what that is for,but know many of the kids on this list take

it, she is also on Prevacid 30 mg twice daily for GERD. So the tummy troubles

are there but she tolerates most things as long as she takes her Prevacid. We do

not eat much spicy food anymore due to her tummy but someday we hope to get back

to it without paying the price afterwards. I never thought much about her being

on an NSAID for so long. I pray that thigns smooth out for you soon.

Veri & Jaye 16 poly

Re: Ibuprofen isn't cutting it...

, Hi, and sorry you're daughters are not doing well right now. Hang in

there. I know you've gotten a lot of posts about moving onto Methotrexate, which

seems like a good next step to me too. But, just in case you stay on the NSAID

too, I wanted to mention that my daughter was on ibuprofen for a long time as

her NSAID (is also on Kineret, Methotrexate, and was on prednisone). Anyway,

ibuprofen was not our first choice. She was started on Indocin, then Naproxen,

but reacted to both, so we ended up on Ibuprofen for a long while and it's a

drag to have to dose it so often per day. We switched to Mobic a while back and

that's just once a day and I *think* it might be a tiny bit easier on the

stomach but I could be wrong because it's a strong NSAID. Good luck with the

appointments.

nn (, 9, systemic)

>

> > Personally I wouldn't wait...I'd talk to both the pedi & the rheumy before

the next appointment...which is almost a week away. I would push to be seen by

the rheumy as soon as possible...I got on the cancel list for ours for the first

available appointment and was seen much sooner that way. Every day that goes by

not only is there the possibility of more joint damage..our poor kids live

thinking being in pain is normal.

> >

> > With my , we only saw the knee but over time he now has his toes, both

knees, both hips , both shoulders, both elbows and possibly some fingers

involved. We could not see the other joints but his rheumy felt them.

> >

> > I too would push for the next step of treatment, MTX...we started injections

about two months after he was diagnosed (two years in April). Then about 8 weeks

later added Enbrel which has been working wonders for him.

> >

> > As for the eyes, is ANA+ and has a few other eye/vision issues so we

see the pedi ophthalmologist every three months.

> >

> > It's hard at first...but now that we are almost two years in and he is

responding so well to treatment...we are settling into this new normal.

> >

> > All the best,

> > & , 7, poly...SPD...nystagmus...

> >

> > Sent from my iPhone

> >

> >

>

>

>

>

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Posted
Posted

Hi all,

 

I'm new on the list and have been reading all the posts for the last month or

so.  I'm responding to 's post because my daughter goes to Duke in Durham

and I was told by a nurse that Winston Salem and Chapel Hill only have one Ped.

Rheumy.  We have seen two at Duke and they are wonderful and aggressive in

their treatment.  A third rheumy at Duke, who works a lot with the fellows,

gave my daughter injections.  All the doctors meet each week to discuss each

patient.  My heart goes out to you and all those who travel long distances to

get to a doctor.  , we are also newbies with JRA and I live in the

Raleigh area.  If you don't feel comfortable with your doctor, get a second

opinion.

 

This has been our journey to date....My daughter, Isabella (3yrs old), started

in mid August 2010 waking up from her naps complaining and crying that her leg

hurt.  This went on for a few days and then it was her arm.  After a 1 1/2

weeks of complaining, I took her to our Ped. Dr. and they immediately did blood

work and saw that her sed rate and crp were elevated.  The Drs. were very

aggressive in their testing for Lyme disease and other possibilities.  I put

her on Ibuprofen and that worked temporarily. The Ped Dr. consulted with

infectious disease and the Ped rheumy at Duke Children's Hospital.  My DD had

a virus early Aug. so the Drs wanted to have her on Ibuprofen (2x day) for at

least 4-6 wks from when she had the virus because a child can have these

symptoms after a virus, but then they go away. In the mean time, her ankle

started swelling and her neck started hurting which really concerned the

rheumy.  They increased the Ibuprofen

and decided to inject the knee and ankle on Oct. 6 and scheduled an MRI for

her neck while she was under sedation.  We went back for the injections and MRI

.....bad news.  She now had both ankles, knees, wrists and possibly her neck

involved.  The Dr. said to forget the injections for now that she needed to be

treated systemically with Methotrexate.  She had the MRI...bad news

again...she ALREADY had very early signs of erosion in the tip of her spine (the

dens).  Up until this point, I was resisting the meds, but this scared me. 

The drs. immediately wanted her on Enbrel, Methotrexate and Celebrex. These

drugs also scared me.   We went back on Dec. 3 and the sed rate and

crp had come down some but not enough to satisfy the dr. because of the spine

involvement.  Her ankles seemed only slightly better.  They took her off

Enbrel and put her on Humira twice a month.  Her pain/inflammation seemed to

get worse!  We had an appt. for

Jan. 14 to see how the new meds. were working and they scheduled injections for

Jan. 18 (they do them every two wks).   Early January, she caught a stomach

virus.  Her arthritis was even worse and she had a hard time battling the

virus.  She finally had the injections on Feb. 2 and we had to increase the

Humira to once a week.  It's been two weeks and what a blessing it has been to

have our little girl playing and laughing again.  It was overnight that

these injections gave her relief.   Last week, Isabella's CRP was 60 down

from 132, SED rate was 72 and WBC was high. As I was typing this post, the

Pediatric nurse called to say she has a UTI which could explain the blood work.

 Also, today and yesterday she complained her knee was hurting.  Can anyone

tell me how long these injections last?

 

I'm praying these injections last a long time and the Humira will begin to

work.  If not, I'm not sure what is next.

 

I forgot to mention Opthamologist visits are every 3 months and PT at home

everyday and with a therapist when we can afford the expense.

 

Joan

Mom to 3 girls and a boy

 

From: mom2fivegreatgirls <saraha1213@...>

Subject: Ibuprofen isn't cutting it...

Date: Tuesday, February 15, 2011, 10:37 PM

 

Ella was officially diagnosed with JRA (pauci) on 1/21. The rheumatologist told

us to start giving her 150 mgs of ibuprofen 3 times a day and follow up with her

pediatrician in a month to see how she's doing. He said if, after 2 months, she

was still having problems they would do another ultrasound and if she still had

fluid on her knee, they would do steroid injections. They said they are going to

try to do as much follow up with her pediatrician (who will talk to the rheumy)

as possible to cut down on the amount of traveling we have to do (the rheumy is

a little over 3 hours from here). Well, the ibuprofen isn't working. Her follow

up appointment is on 2/23. I know it takes some time to build up in her system,

etc, but even before we were told to give it to her 3 times a day, we were

giving it to her any time she was hurting which was pretty often...at least

several times a week. She's still waking up almost every day stiff and limping.

She's still in

pain almost every day. Today she woke up from her nap today complaining of her

ankle and heel hurting. DH thinks I should push for the doctor to try a

different medicine or do something else. Should I? Or should I give the

ibuprofen another month and see if it helps? I don't want to put her on a bunch

of meds, but I want her to feel better! Maybe I'm just being impatient. I don't

know....

I'm sorry for posting my intro and then disappearing. Things have been crazy

around here. On top of everything with Ella, DH is working overtime a lot

(January-February is always crazy busy for him) and I've had the flu. DD#2 is

having some problems with seizures and headaches (she has epilepsy, but until

recently it was well controlled with meds) so they are doing more tests on her.

Things have just been really busy. I have been reading almost all of the posts

and you guys are in my thoughts and prayers. Thanks for the warm welcome! :)

-Mom to five beautiful little girls!

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Posted
Posted

No one can tell you how long they will last. A day, a month, a year or forever.

If your daughter has a UTI, that will tweak her immune system and thus her

arthritis. Whenever n gets sick, her joints act up. (n, 22,

systemic)

Sent from my iPhone

On Feb 16, 2011, at 4:20 PM, JOAN SCHWENDEMAN <jesconsult@...> wrote:

>

>

> Hi all,

>

> I'm new on the list and have been reading all the posts for the last month or

so. I'm responding to 's post because my daughter goes to Duke in Durham

and I was told by a nurse that Winston Salem and Chapel Hill only have one Ped.

Rheumy. We have seen two at Duke and they are wonderful and aggressive in their

treatment. A third rheumy at Duke, who works a lot with the fellows, gave my

daughter injections. All the doctors meet each week to discuss each patient.

My heart goes out to you and all those who travel long distances to get to a

doctor. , we are also newbies with JRA and I live in the Raleigh area. If

you don't feel comfortable with your doctor, get a second opinion.

>

> This has been our journey to date....My daughter, Isabella (3yrs old), started

in mid August 2010 waking up from her naps complaining and crying that her leg

hurt. This went on for a few days and then it was her arm. After a 1 1/2 weeks

of complaining, I took her to our Ped. Dr. and they immediately did blood work

and saw that her sed rate and crp were elevated. The Drs. were very aggressive

in their testing for Lyme disease and other possibilities. I put her on

Ibuprofen and that worked temporarily. The Ped Dr. consulted with infectious

disease and the Ped rheumy at Duke Children's Hospital. My DD had a virus early

Aug. so the Drs wanted to have her on Ibuprofen (2x day) for at least 4-6 wks

from when she had the virus because a child can have these symptoms after a

virus, but then they go away. In the mean time, her ankle started swelling and

her neck started hurting which really concerned the rheumy. They increased the

Ibuprofen

> and decided to inject the knee and ankle on Oct. 6 and scheduled an MRI for

her neck while she was under sedation. We went back for the injections and MRI

.....bad news. She now had both ankles, knees, wrists and possibly her neck

involved. The Dr. said to forget the injections for now that she needed to be

treated systemically with Methotrexate. She had the MRI...bad news again...she

ALREADY had very early signs of erosion in the tip of her spine (the dens). Up

until this point, I was resisting the meds, but this scared me. The drs.

immediately wanted her on Enbrel, Methotrexate and Celebrex. These drugs also

scared me. We went back on Dec. 3 and the sed rate and crp had come down some

but not enough to satisfy the dr. because of the spine involvement. Her ankles

seemed only slightly better. They took her off Enbrel and put her on Humira

twice a month. Her pain/inflammation seemed to get worse! We had an appt. for

> Jan. 14 to see how the new meds. were working and they scheduled injections

for Jan. 18 (they do them every two wks). Early January, she caught a stomach

virus. Her arthritis was even worse and she had a hard time battling the virus.

She finally had the injections on Feb. 2 and we had to increase the Humira to

once a week. It's been two weeks and what a blessing it has been to have our

little girl playing and laughing again. It was overnight that these injections

gave her relief. Last week, Isabella's CRP was 60 down from 132, SED rate was

72 and WBC was high. As I was typing this post, the Pediatric nurse called to

say she has a UTI which could explain the blood work. Also, today and yesterday

she complained her knee was hurting. Can anyone tell me how long these

injections last?

>

> I'm praying these injections last a long time and the Humira will begin to

work. If not, I'm not sure what is next.

>

> I forgot to mention Opthamologist visits are every 3 months and PT at home

everyday and with a therapist when we can afford the expense.

>

> Joan

> Mom to 3 girls and a boy

>

>

>

> From: mom2fivegreatgirls <saraha1213@...>

> Subject: Ibuprofen isn't cutting it...

>

> Date: Tuesday, February 15, 2011, 10:37 PM

>

>

>

> Ella was officially diagnosed with JRA (pauci) on 1/21. The rheumatologist

told us to start giving her 150 mgs of ibuprofen 3 times a day and follow up

with her pediatrician in a month to see how she's doing. He said if, after 2

months, she was still having problems they would do another ultrasound and if

she still had fluid on her knee, they would do steroid injections. They said

they are going to try to do as much follow up with her pediatrician (who will

talk to the rheumy) as possible to cut down on the amount of traveling we have

to do (the rheumy is a little over 3 hours from here). Well, the ibuprofen isn't

working. Her follow up appointment is on 2/23. I know it takes some time to

build up in her system, etc, but even before we were told to give it to her 3

times a day, we were giving it to her any time she was hurting which was pretty

often...at least several times a week. She's still waking up almost every day

stiff and limping. She's still in

> pain almost every day. Today she woke up from her nap today complaining of her

ankle and heel hurting. DH thinks I should push for the doctor to try a

different medicine or do something else. Should I? Or should I give the

ibuprofen another month and see if it helps? I don't want to put her on a bunch

of meds, but I want her to feel better! Maybe I'm just being impatient. I don't

know....

>

> I'm sorry for posting my intro and then disappearing. Things have been crazy

around here. On top of everything with Ella, DH is working overtime a lot

(January-February is always crazy busy for him) and I've had the flu. DD#2 is

having some problems with seizures and headaches (she has epilepsy, but until

recently it was well controlled with meds) so they are doing more tests on her.

Things have just been really busy. I have been reading almost all of the posts

and you guys are in my thoughts and prayers. Thanks for the warm welcome! :)

>

>

> -Mom to five beautiful little girls!

>

>

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Posted
Posted

My daughter has been taking an NSAID since August 2001 I think. Currently--and

for most of the time it has been Celebrex. She also takes MTX, Ultram and

Humira. She failed Enbrel---we got in it on a study in the early days--and

Remicade--and a bunch of other medications. And she takes some other things too

but for her the Celebrex does make a difference in her day to day pain and

ability so she is still taking it about 10 years later.

e, mom to 'joe' 24 poly+

From: nn <rosannwinn@...>

Subject: Re: Ibuprofen isn't cutting it...

Date: Wednesday, February 16, 2011, 10:03 AM

 

Hi ladies,

What do you consider " long term " use of NSAIDs? has been on some kind of

NSAID since Oct 2009 - so going on 15 months I guess. Since we switched to

Mobic the Rheumy AND Ped told us we could discontinue the tummy protector, and

doesn't really have stomach pain, except occasionally it does crop up and

is helped by eating, which makes me worry about ulcers. is on Kineret,

Methotrexate, and Mobic, and recently weaned from prednisone. We are now

weaning Methotrexate, and I was surprised when the Rheumy chose to weant this

first, rather than discontinue the NSAID. I questioned it, and she said that

the Mtx was causing more side effects than the Mobic so she wanted to do it in

that order. She says she usually weans in this order: pred, mtx, then NSAID.

It seems there isn't a " general " mode of treatment when it comes to this, as I

see many kids being weaned from the NSAID before the Mtx. Thoughts?

nn (, 9, systemic)

> > >

> > > > Thanks for your reply! She has been having pain/stiffness since June.

Its

> >mainly her right knee, but she's had times when her left knee was hurting her

as

> >

> >well...this isn't the first time she's complained of her ankle hurting

either.

> >When the rheumy saw her (on a really good day...), he said he saw no signs of

> >arthritis on the exam. He ordered a ton of blood work and x-rays. Her sed

rate

> >and c-reactive protein were both elevated and the x-ray showed a " probably

small

> >

> >joint effusion of the right knee " . After that, he sent her for an ultrasound

of

>

> >her knees which confirmed an effusion of the right knee. After that he called

> >and said she does have JRA and started her on the ibuprofen.

> >

> > > >

> > > > We live right outside of Charlotte, so there are a lot of specialists

near

>

> >by...including pediatric orthopedic doctors. There is not a ped

rheumatologist

> >here though. The one she is seeing is in Chapel Hill. From what I'm reading,

> >doctors seem to treat more aggressively than they seem to be doing with Ella.

> >I'm going to talk to her pediatrician about everything at her appointment on

the

> >

> >23rd and if I don't get anywhere with that, I'll call the rheumatologist and

see

> >

> >what he says. I just want her feeling better.

> >

> > > >

> > > > She has seen an ophthalmologist. He is familiar with JRA (his wife

had/has

>

> >it) and said that while everything looks good right now, he wants to see her

at

>

> >least every 6 months.

> >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >> ,

> > > >> With five girls I am sure you are very busy. It only takes an NSAID

about

>

> >two

> >

> > > >> weeks to take effect so it does not sound like it is cutting

it.Injecting

>

> >the

> >

> > > >> knee sounds like a good idea but now that there may be ankle

> >involvement,where

> >

> > > >> does that leave it? I understand you not wanting your child on a bunch

of

>

> >meds

> >

> > > >> due to the fear but in all honesty a lot of the times all those strong

> >meds are

> >

> > > >> better then the damage that the arthritis is doing.You are not even in

a

> >month

> >

> > > >> of diagnosis so the fear is understandable so my best advise is to keep

> >asking

> >

> > > >> questions and learn as much as you can about this disease.There is an

> >abundance

> >

> > > >> of info on the web but things have changed so much over the last decade

I

>

> >would

> >

> > > >> try and look at things over the last few yrs.

> > > >> We travel six hours,by choice but is there a hospital closer with

> >Orthopedic

> >

> > > >> surgeons that could inject your daughters knee? I don't understand the

> > > >> ultrasound because you can manipulate the knee and bring all of the

fluid

>

> >to the

> >

> > > >> top. Not saying that an ultra sound is bad just in my sons case it was

> >never

> >

> > > >> needed.

> > > >> You really might want to consider talking to your ped rheumy about

> > > >> Methotrexate. It has been used for decades and is one of the first

steps

> >of

> >

> > > >> standard care. It is a chemo drug but you must understand the doses

used

> >to

> >

> > > >> treat our kids are 100's-1,000's less then someone with cancer. Make

sure

>

> >to get

> >

> > > >> Ella into a pedOphthalmologist for a slit lamp test if you haven't

> >already.

> >

> > > >> Pauci kids are at a greater risk for eye inflammation that can have no

> >symptoms

> >

> > > >> until severe.

> > > >> Keep us posted and hugs,

> > > >> Becki and SoJra

> > > >>

> > > >> ________________________________

> > > >> From: mom2fivegreatgirls

<saraha1213@...<mailto:saraha1213%40gmail.com>>

> > > >> <mailto: %40>

> > > >> Sent: Tue, February 15, 2011 9:37:02 PM

> > > >> Subject: Ibuprofen isn't cutting it...

> > > >>

> > > >> Ella was officially diagnosed with JRA (pauci) on 1/21. The

rheumatologist

> >

> >told

> >

> > > >> us to start giving her 150 mgs of ibuprofen 3 times a day and follow up

> >with her

> >

> > > >> pediatrician in a month to see how she's doing. He said if, after 2

> >months, she

> >

> > > >> was still having problems they would do another ultrasound and if she

> >still had

> >

> > > >> fluid on her knee, they would do steroid injections. They said they are

> >going

> >

> > > >> to try to do as much follow up with her pediatrician (who will talk to

the

> >

> >

> > > >> rheumy) as possible to cut down on the amount of traveling we have to

do

> >(the

> >

> > > >> rheumy is a little over 3 hours from here). Well, the ibuprofen isn't

> >working.

> >

> > > >> Her follow up appointment is on 2/23. I know it takes some time to

build

> >up in

> >

> > > >> her system, etc, but even before we were told to give it to her 3 times

a

>

> >day,

> >

> > > >> we were giving it to her any time she was hurting which was pretty

> >often...at

> >

> > > >> least several times a week. She's still waking up almost every day

stiff

> >and

> >

> > > >> limping. She's still in pain almost every day. Today she woke up from

her

>

> >nap

> >

> > > >> today complaining of her ankle and heel hurting. DH thinks I should

push

> >for

> >

> > > >> the doctor to try a different medicine or do something else. Should I?

Or

>

> > > >> should I give the ibuprofen another month and see if it helps? I don't

> >want to

> >

> > > >> put her on a bunch of meds, but I want her to feel better! Maybe I'm

just

>

> >being

> >

> > > >> impatient. I don't know....

> > > >>

> > > >> I'm sorry for posting my intro and then disappearing. Things have been

> >crazy

> >

> > > >> around here. On top of everything with Ella, DH is working overtime a

lot

>

> > > >> (January-February is always crazy busy for him) and I've had the flu.

DD#2

> >

> >is

> >

> > > >> having some problems with seizures and headaches (she has epilepsy, but

> >until

> >

> > > >> recently it was well controlled with meds) so they are doing more tests

on

> >

> >her.

> >

> > > >> Things have just been really busy. I have been reading almost all of

the

> >posts

> >

> > > >> and you guys are in my thoughts and prayers. Thanks for the warm

welcome!

>

> >:)

> > > >>

> > > >>

> > > >> -Mom to five beautiful little girls!

> > > >>

> > > >> __________________________________________________________

> > > >> Sucker-punch spam with award-winning protection.

> > > >> Try the free Beta.

> > > >> http://advision.webevents./mailbeta/features_spam.html

> > > >>

> > > >>

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Posted
Posted

God bless you ! Five angels. Two kids with medical issues. One still in

pain.

Your doc. sounds like our first one. He just started Nsaid and watched. That

bothered me because it would be months and he didn't seem to care. We found our

new doc. and he " put the fire out quickly " starting Methotrexate, and then

Enbrel. He doesn't prescribe pain meds, because his theory is

" if they are hurting their arthritis isn't under control. " Not to say my kids

never ache or anything, but not in the limping pain that they were diagnosed

with. When my daughter had recent limping knee pain, he saw her immediately and

worked out a plan. We started a new stronger nsaid and physical therapy. Now

her knee is barely achy.

I'll keep you in my prayers. You have your hands full!

Audra

14 poly 07

Peyton 13 poly 08

>

> Ella was officially diagnosed with JRA (pauci) on 1/21. The rheumatologist

told us to start giving her 150 mgs of ibuprofen 3 times a day and follow up

with her pediatrician in a month to see how

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Ditto for my son, . Long-term use of a daily NSAID has been a part of

his treatment regime since May of 1995. He trien several types in the

beginning but found through trial and error that the most effective, for

him, has been Indomethacin. Twice a day. Morning and evening. For the past

few months he's had a new rheumatologist. At age 21, he needed to transition

from a pediatric rheumatologist he'd seen since the age of six to a doctor

who treats adults. Well, after a few visits the new doc felt he was doing so

well that he no longer needed the 50mg Indomethacin twice a day. He'd been

in a medicated remission with no arthritic symptoms for close to two years!

Unfortunately, by day three, Josh was in pretty bad shape. Even morning

stiffness had returned and I think he'd forgotten how rough that was. Or had

wanted to forget, at least. He had really sore ankles, knees, wrists, and

neck. His general sense of well-being was replaced by stiffness, aches, and

pains. Not good.

Josh is informed about the associated risks, particularly with long-term

use, and he knows from personal experience about the dangers (hn the past

he's had experience with gastrointestinal bleeding,duodenal inflammation,

ulceration). However, he eventually phoned the doc to tell him his body just

wasn't ready for the change yet. He missed school and he missed work and he

was worried that it would only get worse if he didn't get back on schedule

with an evening dose again.

He told me he'd rather feel pretty good day to day and risk not living quite

as long than have to live with so much pain everyday that he couldn't do the

things that were important to him., like going to school and going to work

and being able to socialize.

Seems that even after all these years the arthritis is still just waiting

for a chance to rear it head.

Fortunately, though, Josh is on the med again : )

Aloha,

Georgina

Re: Ibuprofen isn't cutting it...

My daughter has been taking an NSAID since August 2001 I think.

Currently--and for most of the time it has been Celebrex. She also takes

MTX, Ultram and Humira. She failed Enbrel---we got in it on a study in the

early days--and Remicade--and a bunch of other medications. And she takes

some other things too but for her the Celebrex does make a difference in her

day to day pain and ability so she is still taking it about 10 years later.

e, mom to 'joe' 24 poly+

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I am glad to hear that Josh is doing well again.

n is another who has been on NSAIDs for a long time. Naprosyn for over 11

years. ( n,22, systemic)

Sent from my iPhone

On Feb 17, 2011, at 6:43 PM, " Georgina " <gmckin11@...> wrote:

> Ditto for my son, . Long-term use of a daily NSAID has been a part of

> his treatment regime since May of 1995. He trien several types in the

> beginning but found through trial and error that the most effective, for

> him, has been Indomethacin. Twice a day. Morning and evening. For the past

> few months he's had a new rheumatologist. At age 21, he needed to transition

> from a pediatric rheumatologist he'd seen since the age of six to a doctor

> who treats adults. Well, after a few visits the new doc felt he was doing so

> well that he no longer needed the 50mg Indomethacin twice a day. He'd been

> in a medicated remission with no arthritic symptoms for close to two years!

>

> Unfortunately, by day three, Josh was in pretty bad shape. Even morning

> stiffness had returned and I think he'd forgotten how rough that was. Or had

> wanted to forget, at least. He had really sore ankles, knees, wrists, and

> neck. His general sense of well-being was replaced by stiffness, aches, and

> pains. Not good.

>

> Josh is informed about the associated risks, particularly with long-term

> use, and he knows from personal experience about the dangers (hn the past

> he's had experience with gastrointestinal bleeding,duodenal inflammation,

> ulceration). However, he eventually phoned the doc to tell him his body just

> wasn't ready for the change yet. He missed school and he missed work and he

> was worried that it would only get worse if he didn't get back on schedule

> with an evening dose again.

>

> He told me he'd rather feel pretty good day to day and risk not living quite

> as long than have to live with so much pain everyday that he couldn't do the

> things that were important to him., like going to school and going to work

> and being able to socialize.

>

> Seems that even after all these years the arthritis is still just waiting

> for a chance to rear it head.

>

> Fortunately, though, Josh is on the med again : )

>

> Aloha,

> Georgina

>

> Re: Ibuprofen isn't cutting it...

>

> My daughter has been taking an NSAID since August 2001 I think.

> Currently--and for most of the time it has been Celebrex. She also takes

> MTX, Ultram and Humira. She failed Enbrel---we got in it on a study in the

> early days--and Remicade--and a bunch of other medications. And she takes

> some other things too but for her the Celebrex does make a difference in her

> day to day pain and ability so she is still taking it about 10 years later.

>

> e, mom to 'joe' 24 poly+

>

>

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Posted
Posted

Hi Georgina. So nice to see an update on Josh! I hope that he continues to do

well overall.

I think all the posts with the different ideas about NSAIDs just shows how this

disease is so different from person to person. That’s why the list is so

important - giving people information and education about the ways to handle JA

in its many forms. Hugs, Michele (23, spondy)

From: [mailto: ] On Behalf Of

Georgina

Sent: Thursday, February 17, 2011 8:44 PM

Subject: Re: Ibuprofen isn't cutting it...

Ditto for my son, . Long-term use of a daily NSAID has been a part of

his treatment regime since May of 1995. He trien several types in the

beginning but found through trial and error that the most effective, for

him, has been Indomethacin. Twice a day. Morning and evening. For the past

few months he's had a new rheumatologist. At age 21, he needed to transition

from a pediatric rheumatologist he'd seen since the age of six to a doctor

who treats adults. Well, after a few visits the new doc felt he was doing so

well that he no longer needed the 50mg Indomethacin twice a day. He'd been

in a medicated remission with no arthritic symptoms for close to two years!

Unfortunately, by day three, Josh was in pretty bad shape. Even morning

stiffness had returned and I think he'd forgotten how rough that was. Or had

wanted to forget, at least. He had really sore ankles, knees, wrists, and

neck. His general sense of well-being was replaced by stiffness, aches, and

pains. Not good.

Josh is informed about the associated risks, particularly with long-term

use, and he knows from personal experience about the dangers (hn the past

he's had experience with gastrointestinal bleeding,duodenal inflammation,

ulceration). However, he eventually phoned the doc to tell him his body just

wasn't ready for the change yet. He missed school and he missed work and he

was worried that it would only get worse if he didn't get back on schedule

with an evening dose again.

He told me he'd rather feel pretty good day to day and risk not living quite

as long than have to live with so much pain everyday that he couldn't do the

things that were important to him., like going to school and going to work

and being able to socialize.

Seems that even after all these years the arthritis is still just waiting

for a chance to rear it head.

Fortunately, though, Josh is on the med again : )

Aloha,

Georgina

Re: Ibuprofen isn't cutting it...

My daughter has been taking an NSAID since August 2001 I think.

Currently--and for most of the time it has been Celebrex. She also takes

MTX, Ultram and Humira. She failed Enbrel---we got in it on a study in the

early days--and Remicade--and a bunch of other medications. And she takes

some other things too but for her the Celebrex does make a difference in her

day to day pain and ability so she is still taking it about 10 years later.

e, mom to 'joe' 24 poly+

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