Re: Systemic Onset JRA

[Guest guest]

Vicky,

Methotrexate a very common drug that is used. It can take awhile before you start to notice a difference, but it really seems to help keep the disease under control. It comes in pill form or injection and my daughter has used both and she prefers the injections (she's 8 yrs. old). The pills seemed to make her pretty sick to where the injection dosen't make her feel as sick.

As with any drug, it has its side effects. The most common are nausea and fatigue. We give her the shot on Friday night and usually by Monday she is able to go to school with little or no problems.

The doctors will probably monitor her liver pretty closely among other things and this will be common as well. All in all, I believe it was a right choice putting our child on this (4 1/2 yrs. ago). She still has a great deal of pain at times and she has a rash usually after her bath, but nothing like it was before she started MTX.

I know this is a scary thing of the not knowing--I think most of us in this group have walked in your shoes. This group has some wonderful people in it and they will help you in more ways than one can imagine. They have been my life-line many times.

Good luck and I hope things will fall into place for you all really soon!

[Guest guest]

Vicky,

Welcome to our group. Your experience with lack of joint pain and just fever and rash was ours as well. The joint pain was a long time coming and the rash stuck around for a good 18 months. My daughter Abbie (12 systemic) was diagnosed in Feb. 2000 after getting sick in Oct. 1999. We always thought that was a quick diagnosis, but yours was much faster. Believe it or not, that's a good thing.

As for methotrexate, that in my book is a good thing. It has worked well for quite a while. Abbie experienced classic nausea when she was on an oral dose (as high as 25 mg/week), but switched to sub q injections when it had to go higher. Now the only side effect is what can only be described as a thickening of her saliva, which causes a bad taste in her mouth. So we always give it to her during supper.

You are fortunate that your daughter is not on prednisone. Hopefully the mtx can gain the control you need and you can avoid that. Good luck, and again, welcome.

Christy (Abbie 12, systemic)

[Guest guest]

Hello Vicky, and welcome to the group, University of Michigan! know it well spent a lot of time there my self, when I first was diagnosed. there was very few Rheumatologists around, yet alone ped rheumy's.

They are a lot better educated on the decease today than they were 3 decades ago. I was on mostly steroids back then, cortisone and predisone, along with a lot of aspirin, until it started to eat my stomach.

Then they put me of Ascriptin and then to Bufferend Asprin. The use of drugs such as Indosin and Butazoladin weren't given to any one under 18 at the time I was told. I'm a poly-ankylosisspondylitis jra'er! with some Osteo thrown in.

Just keep asking those questions and the folks here on the group will give you all the answers they can. And if they can't they'll try to find them for you!

Prayers and good thoughts be will you and the little one.

they call me, RUSTY LIMBS

On Thu, 18 Apr 2002 19:47:50 -0000 "vdziubinski48108" <vdziubinski48108@...> writes:

My 6 year old daughter was just diagnosed with Systemic Onset JRA in early December. Right around Thanksgiving she started with a fever and a rash in the morning that would go away during the day and then return at night. The fever usually got up around 102 to 103. Over the course of a two week period we kept taking her back to see her pediatrician, who did blood work, etc.. He remembered seeing a similar case some years ago and thought it might be JRA he referred us to a Pediatric Rheumotologist at the University of Michigan. The Rheumotologist confirmed the diagnosis and put her on Naporsyn. In March she had a flare up, I believe do to a stressful week at school, and her feet and fingers swelled, her knees hurt and she could hardly walk. The doctor switched her meds to Indocyn (sp?). The fevers went away within a week of being on the Naprosyn but the rash still continues. It usually appears at night and is gone in the morning. When she is excited or overally warm it seems to appear to be worse. It also seems to be a three dimensional rash. The doctor has suggested that if the rash is not gone by her next visit she is going to put her on Methotrexate. I don't know what to expect or where this will go from here. I try not to worry as the only joint pain or swelling she has had was that couple days about a month ago. But in the back of your mind it doesn't go away. I would love to hear stories from other parents who have children that have dealt with Systemic Onset JRA and what course the disease has taken. Thank you.Vicky

[Guest guest]

My daughter, Rae, has systemic onset JRA as well and her rheumy put her on the injections as well. I didn't notice a difference until she was on if for about three months. She is also taking folic acid because something in the MTX depletes her energy. Just hang in there... Right now, she is taking a low dosage of it every Saturday.

Theresa, WPB, FL

>From: KAmitchemalways@... >Reply- > >Subject: Re: Systemic Onset JRA >Date: Thu, 18 Apr 2002 20:59:21 EDT > >Vicky, >Methotrexate a very common drug that is used. It can take awhile before you >start to notice a difference, but it really seems to help keep the disease >under control. It comes in pill form or injection and my daughter has used >both and she prefers the injections (she's 8 yrs. old). The pills seemed to >make her pretty sick to where the injection dosen't make her feel as sick. >As with any drug, it has its side effects. The most common are nausea and >fatigue. We give her the shot on Friday night and usually by Monday she is >able to go to school with little or no problems. >The doctors will probably monitor her liver pretty closely among other things >and this will be common as well. All in all, I believe it was a right choice >putting our child on this (4 1/2 yrs. ago). She still has a great deal of >pain at times and she has a rash usually after her bath, but nothing like it >was before she started MTX. >I know this is a scary thing of the not knowing--I think most of us in this >group have walked in your shoes. This group has some wonderful people in it >and they will help you in more ways than one can imagine. They have been my >life-line many times. >Good luck and I hope things will fall into place for you all really soon! > > Join the world’s largest e-mail service with MSN Hotmail. Click Here

[Guest guest]

Hello Vicky and welcome! My daughter is Tabitha is 17yo. and has

polyarticular..not systemic jra. But I wanted to reply to your post..hope

you don't mind. My daughter was diagnosed in 89' at 4. The first rheumy

didn't work out well..so I took her to another who put her on indocin but

then her liver count was way high when they did blood work..so a liver

biopsy was done, we found out it was the indocin..so she was switched to

naporsyn and she is still on it today..with no side effects.thank goodness!

It is so wierd how meds can work well for one child and not so well for

another. Anyways the rheumy put her on mtx., she was on pills, then we tried

the injections which she had a reaction to so she was switched back to pills

and she is still on them today..even though Tabitha has alot of joint damage

through her body..I do believe mtx..was the best medicine for her..

Good luck and hope all goes well

karen(tab17..poly)

From: " vdziubinski48108 " <vdziubinski48108@...>

Reply-

Subject: Systemic Onset JRA

Date: Thu, 18 Apr 2002 19:47:50 -0000

My 6 year old daughter was just diagnosed with Systemic Onset JRA in

early December. Right around Thanksgiving she started with a fever

and a rash in the morning that would go away during the day and then

return at night. The fever usually got up around 102 to 103. Over

the course of a two week period we kept taking her back to see her

pediatrician, who did blood work, etc.. He remembered seeing a

similar case some years ago and thought it might be JRA he referred

us to a Pediatric Rheumotologist at the University of Michigan. The

Rheumotologist confirmed the diagnosis and put her on Naporsyn. In

March she had a flare up, I believe do to a stressful week at school,

and her feet and fingers swelled, her knees hurt and she could hardly

walk. The doctor switched her meds to Indocyn (sp?). The fevers went

away within a week of being on the Naprosyn but the rash still

continues. It usually appears at night and is gone in the morning.

When she is excited or overally warm it seems to appear to be worse.

It also seems to be a three dimensional rash. The doctor has

suggested that if the rash is not gone by her next visit she is going

to put her on Methotrexate. I don't know what to expect or where

this will go from here. I try not to worry as the only joint pain or

swelling she has had was that couple days about a month ago. But in

the back of your mind it doesn't go away. I would love to hear

stories from other parents who have children that have dealt with

Systemic Onset JRA and what course the disease has taken. Thank you.

Vicky

_________________________________________________________________

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[Guest guest]

Dear Vicky, My thirteen year old daughter, n , was diagnosed with

systemic when she was ten. She was diagnosed fairly quickly due to the

cyclical temps. and the rashes. n's arthritis has always travelled

around, and has never settled in one particular joint. n was first

started on naprosyn and that lasted for about three months, and then the

fevers came back. n has abdominal tenderness and headaches when she

flares. The backs of her legs will hurt her. She was then put on

prednisone and plaquenil, and that lasted for two years. (She was on the

steroids for 13 months) n has had some remnant of the rash for the

whole time. Sometime it is ever so faint, but lately it can be widespread.

I have found that the worse the rash, then n feels worse. Heat, warm

water, and fatigue seems to bring n's on. If she gets sick, the

disease will worsen as well. I have read that after the fever goes away, it

can be up to a year before the arthritis sets in. Anyway, that is our

story-or most of it. Good luck.

>From: " vdziubinski48108 " <vdziubinski48108@...>

>Reply-

>

>Subject: Systemic Onset JRA

>Date: Thu, 18 Apr 2002 19:47:50 -0000

>

>My 6 year old daughter was just diagnosed with Systemic Onset JRA in

>early December. Right around Thanksgiving she started with a fever

>and a rash in the morning that would go away during the day and then

>return at night. The fever usually got up around 102 to 103. Over

>the course of a two week period we kept taking her back to see her

>pediatrician, who did blood work, etc.. He remembered seeing a

>similar case some years ago and thought it might be JRA he referred

>us to a Pediatric Rheumotologist at the University of Michigan. The

>Rheumotologist confirmed the diagnosis and put her on Naporsyn. In

>March she had a flare up, I believe do to a stressful week at school,

>and her feet and fingers swelled, her knees hurt and she could hardly

>walk. The doctor switched her meds to Indocyn (sp?). The fevers went

>away within a week of being on the Naprosyn but the rash still

>continues. It usually appears at night and is gone in the morning.

>When she is excited or overally warm it seems to appear to be worse.

>It also seems to be a three dimensional rash. The doctor has

>suggested that if the rash is not gone by her next visit she is going

>to put her on Methotrexate. I don't know what to expect or where

>this will go from here. I try not to worry as the only joint pain or

>swelling she has had was that couple days about a month ago. But in

>the back of your mind it doesn't go away. I would love to hear

>stories from other parents who have children that have dealt with

>Systemic Onset JRA and what course the disease has taken. Thank you.

>Vicky

>

>

>

>

>

>

[Guest guest]

Christy,

Thanks for your reply. It really does help to know others are out there that are experiencing the same thing. I hope and pray that the joint pain never develops but I know that it could happen. The weekend flare up that did have she did not take well. She was quite sad, cried, and wanted to know why she had to have this disease. It breaks a moms heart. I will keep all posted on 's progress. Her next visit is May 7th. Thanks again.

Vicky ( 7, Systemic)

gazelle34@... wrote: Vicky,Welcome to our group. Your experience with lack of joint pain and just fever and rash was ours as well. The joint pain was a long time coming and the rash stuck around for a good 18 months. My daughter Abbie (12 systemic) was diagnosed in Feb. 2000 after getting sick in Oct. 1999. We always thought that was a quick diagnosis, but yours was much faster. Believe it or not, that's a good thing.As for methotrexate, that in my book is a good thing. It has worked well for quite a while. Abbie experienced classic nausea when she was on an oral dose (as high as 25 mg/week), but switched to sub q injections when it had to go higher. Now the only side effect is what can only be described as a thickening of her saliva, which causes a bad taste in her mouth. So we always give it to her during supper.You are fortunate that your daughter is not on prednisone. Hopefully the mtx can gain the control you need and you can avoid that. Good luck, and again, welcome.Christy (Abbie 12, systemic)

[Guest guest]

, Thanks for you reply to my posting. It is good to know there are others out there that have been through what we are going through. I did not realize Methotrexate could be given in pill form or injection. When we return to the doctor on May 7th I will discuss this with her. It seems from others responses as well as yours that the children all seem to take the injections better than the pill form of the drug. This is good to know in advance. I will keep you posted on her progress. Thanks again.

Vicky ( 7, Systemic)

KAmitchemalways@... wrote: Vicky,Methotrexate a very common drug that is used. It can take awhile before you start to notice a difference, but it really seems to help keep the disease under control. It comes in pill form or injection and my daughter has used both and she prefers the injections (she's 8 yrs. old). The pills seemed to make her pretty sick to where the injection dosen't make her feel as sick.As with any drug, it has its side effects. The most common are nausea and fatigue. We give her the shot on Friday night and usually by Monday she is able to go to school with little or no problems.The doctors will probably monitor her liver pretty closely among other things and this will be common as well. All in all, I believe it was a right choice putting our child on this (4 1/2 yrs. ago). She still has a great deal of pain at times and she has a rash usually after her bath, but nothing like it was before she started MTX.I know this is a scary thing of the not knowing--I think most of us in this group have walked in your shoes. This group has some wonderful people in it and they will help you in more ways than one can imagine. They have been my life-line many times.Good luck and I hope things will fall into place for you all really soon!

[Guest guest]

Hi Vicky,

My son Josh has had Systemic JRA since he was 6. He started taking MTX just weeks into it. He started at 7.5mgs, in pill form. Over time the dose was raised gradually up to 15mgs. Our doctor ordered a blood test at one point, to try to determine if he was absorbing enough of the MTX by this route. As it turns out, they suggested that we switch from pill form to weekly subcutaneous injections. About a month after doing so my son's monthly labs came back better than they ever had before. Not sure if it was just a coincidence or what ... but ever since he switched to the injections he started responding really well and showing lots of improvement. It seemed like finally his JRA symptoms were becoming controllable, in a way that they hadn't ever really been for the first 5 years. We were even able to finally begin reducing his steroids in a meaningful way. Meaning ... as soon as we lowered the dose, we didn't have to worry about the symptoms coming back real strong and having to increase them almost as quickly as we tapered.

After a year or so of doing the shots every week, my son acted out and demanded that he take the pills again, instead of the shots. He hated it (even though he loved finally not feeling sick and always achey and sore anymore!). His rheumatologist said we could compromise, as long as he didn't all of a sudden have lots more active arthritis again. For almost two years now, he's been having the shot one week and taking the pills the next. And it's still working well. I don't know of any other kids who do it like this but for us it made a big difference in 's acceptance and compliance, which is very important.

Aloha,

Georgina

----- Original Message -----

From: Vicky Dziubinski

It is good to know there are others out there that have been through what we are going through. I did not realize Methotrexate could be given in pill form or injection. When we return to the doctor on May 7th I will discuss this with her. It seems from others responses as well as yours that the children all seem to take the injections better than the pill form of the drug. This is good to know in advance. I will keep you posted on her progress. Thanks again. Vicky ( 7, Systemic)

[Guest guest]

Rusty,

Thanks for responding. In the few days I have been a member of this group I have learned so much about JRA. It is good to have a group of people to talk to that know and understand what we are going through. My daughter 's (age 7) next visit with her rheumotologist is May 7th, this is when I think they are going to decide to put her on Methotrexate. Makes me nervous! No joint pain yet but she is still getting the rash, this really her only symptom right now. Her pediatric rheumotologist is Dr. Barbara at the University of Michigan and she is wonderful. I just love her, and she is great with Jess. I just hope and pray things will turn out ok. Take care. Vicky ( 7, Systemic)

A Morse <dam755@...> wrote:

Hello Vicky, and welcome to the group, University of Michigan! know it well spent a lot of time there my self, when I first was diagnosed. there was very few Rheumatologists around, yet alone ped rheumy's.

They are a lot better educated on the decease today than they were 3 decades ago. I was on mostly steroids back then, cortisone and predisone, along with a lot of aspirin, until it started to eat my stomach.

Then they put me of Ascriptin and then to Bufferend Asprin. The use of drugs such as Indosin and Butazoladin weren't given to any one under 18 at the time I was told. I'm a poly-ankylosisspondylitis jra'er! with some Osteo thrown in.

Just keep asking those questions and the folks here on the group will give you all the answers they can. And if they can't they'll try to find them for you!

Prayers and good thoughts be will you and the little one.

they call me, RUSTY LIMBS

On Thu, 18 Apr 2002 19:47:50 -0000 "vdziubinski48108" <vdziubinski48108@...> writes:

My 6 year old daughter was just diagnosed with Systemic Onset JRA in early December. Right around Thanksgiving she started with a fever and a rash in the morning that would go away during the day and then return at night. The fever usually got up around 102 to 103. Over the course of a two week period we kept taking her back to see her pediatrician, who did blood work, etc.. He remembered seeing a similar case some years ago and thought it might be JRA he referred us to a Pediatric Rheumotologist at the University of Michigan. The Rheumotologist confirmed the diagnosis and put her on Naporsyn. In March she had a flare up, I believe do to a stressful week at school, and her feet and fingers swelled, her knees hurt and she could hardly walk. The doctor switched her meds to Indocyn (sp?). The fevers went away within a week of being on the Naprosyn but the rash still continues. It usually appears at night and is gone in the morning. When she is excited or overally warm it seems to appear to be worse. It also seems to be a three dimensional rash. The doctor has suggested that if the rash is not gone by her next visit she is going to put her on Methotrexate. I don't know what to expect or where this will go from here. I try not to worry as the only joint pain or swelling she has had was that couple days about a month ago. But in the back of your mind it doesn't go away. I would love to hear stories from other parents who have children that have dealt with Systemic Onset JRA and what course the disease has taken. Thank you.Vicky

[Guest guest]

Hi Vicky,

With some children, they say joint pain and inflammation doesn't show up until several months after the onset of other systemic symptoms. For my son, it happened at the same time. He cried and complained of pain and stiffness, which I attributed to regular childhood activities (thinking he maybe fell on the school playground during recess and maybe didn't remember getting hurt ... or the usual scape-goat: growing pains) and it was while trying to get him more comfortable that I noticed the mysterious rash and felt the warmth of his fever. Like your daughter, also used to get the fevers and rash twice each day. Morning and night.

As time went on and he was started on medications, it became not quite so regular anymore. Instead of everyday it became sort of a marker for us, appearing only when he was having more active arthritis. It's only been in the past 2 years that Josh hasn't had the fevers and rashes with some regularity. The rash is only a once in a while thing now. And the fevers that used to happen every single day haven't been bothersome at all. In fact, lately, even when Josh feels not so good and thinks he might have a JRA-related fever .... each time we've checked his temp it registers low. Below 98.6. I even wondered if maybe his internal thermometer maybe got screwed up, after so many 103+ fevers.

Aloha, Georgina

----- Original Message -----

From: vdziubinski48108

My 6 year old daughter was just diagnosed with Systemic Onset JRA in early December. Right around Thanksgiving she started with a fever and a rash in the morning that would go away during the day and then return at night. The fever usually got up around 102 to 103. Over the course of a two week period we kept taking her back to see her pediatrician, who did blood work, etc.. He remembered seeing a similar case some years ago and thought it might be JRA he referred us to a Pediatric Rheumotologist at the University of Michigan. The Rheumotologist confirmed the diagnosis and put her on Naporsyn. In March she had a flare up, I believe do to a stressful week at school, and her feet and fingers swelled, her knees hurt and she could hardly walk. The doctor switched her meds to Indocyn (sp?). The fevers went away within a week of being on the Naprosyn but the rash still continues. It usually appears at night and is gone in the morning. When she is excited or overally warm it seems to appear to be worse. It also seems to be a three dimensional rash. The doctor has suggested that if the rash is not gone by her next visit she is going to put her on Methotrexate. I don't know what to expect or where this will go from here. I try not to worry as the only joint pain or swelling she has had was that couple days about a month ago. But in the back of your mind it doesn't go away. I would love to hear stories from other parents who have children that have dealt with Systemic Onset JRA and what course the disease has taken. Thank you.Vicky

[Guest guest]

Vicky, my daughter had the same exact symptoms. Only, there was not one pediatrician who knew what it was. After her fever shot up to 106 and the rash was prominent all over her body, did they admit her to the hospital. I look back now and think, how dumb of me not to see the signs, but we were in this hospital for 2 weeks until her now rheumy diagnosed her within 2 minutes! She was 3 at the time, she is 5 now. We are taking methotrexate and vioxx and folic acid. The mtx takes a while to start working and when he first put her on it, I got frustrated with the lack of response. So, if it comes down to it, don't get frustrated, it takes a good 3 months to work... Naprosyn was what was on when first diagnosed. But her rheumy put her in a study that tested the nap versus vioxx. In fact the study is almost over and her next visit is May and they are going to take her off vioxx for 2 weeks to see how she reacts without it. I am very stressed over this, but hopefully all will go well. However, she has had a few bad flares. I am beginning to think her wonder drug is Tylenol. LOL...

Good luck, and keep in touch

Theresa-West Palm Beach, FL

>From: "Georgina"

>Reply- >

>Subject: Re: Systemic Onset JRA >Date: Fri, 26 Apr 2002 12:38:14 -1000 > >Hi Vicky, > >With some children, they say joint pain and inflammation doesn't show up until several months after the onset of other systemic symptoms. For my son, it happened at the same time. He cried and complained of pain and stiffness, which I attributed to regular childhood activities (thinking he maybe fell on the school playground during recess and maybe didn't remember getting hurt ... or the usual scape-goat: growing pains) and it was while trying to get him more comfortable that I noticed the mysterious rash and felt the warmth of his fever. Like your daughter, also used to get the fevers and rash twice each day. Morning and night. > >As time went on and he was started on medications, it became not quite so regular anymore. Instead of everyday it became sort of a marker for us, appearing only when he was having more active arthritis. It's only been in the past 2 years that Josh hasn't had the fevers and rashes with some regularity. The rash is only a once in a while thing now. And the fevers that used to happen every single day haven't been bothersome at all. In fact, lately, even when Josh feels not so good and thinks he might have a JRA-related fever .... each time we've checked his temp it registers low. Below 98.6. I even wondered if maybe his internal thermometer maybe got screwed up, after so many 103+ fevers. > >Aloha, Georgina > ----- Original Message ----- > From: vdziubinski48108 > My 6 year old daughter was just diagnosed with Systemic Onset JRA in > early December. Right around Thanksgiving she started with a fever > and a rash in the morning that would go away during the day and then > return at night. The fever usually got up around 102 to 103. Over > the course of a two week period we kept taking her back to see her > pediatrician, who did blood work, etc.. He remembered seeing a > similar case some years ago and thought it might be JRA he referred > us to a Pediatric Rheumotologist at the University of Michigan. The > Rheumotologist confirmed the diagnosis and put her on Naporsyn. In > March she had a flare up, I believe do to a stressful week at school, > and her feet and fingers swelled, her knees hurt and she could hardly > walk. The doctor switched her meds to Indocyn (sp?). The fevers went > away within a week of being on the Naprosyn but the rash still > continues. It usually appears at night and is gone in the morning. > When she is excited or overally warm it seems to appear to be worse. > It also seems to be a three dimensional rash. The doctor has > suggested that if the rash is not gone by her next visit she is going > to put her on Methotrexate. I don't know what to expect or where > this will go from here. I try not to worry as the only joint pain or > swelling she has had was that couple days about a month ago. But in > the back of your mind it doesn't go away. I would love to hear > stories from other parents who have children that have dealt with > Systemic Onset JRA and what course the disease has taken. Thank you. > Vicky Join the world’s largest e-mail service with MSN Hotmail. Click Here

[Guest guest]

Hi Theresa,

I know you must be feeling nervous about discontinuing the Vioxx. I hope it all works out okay and doesn't cause a flare-up. Just wanted you to know that you and your daughter will be in our thoughts.

Aloha, Georgina

----- Original Message -----

From: Theresa Kuhn

Vicky, my daughter had the same exact symptoms. Only, there was not one pediatrician who knew what it was. After her fever shot up to 106 and the rash was prominent all over her body, did they admit her to the hospital. I look back now and think, how dumb of me not to see the signs, but we were in this hospital for 2 weeks until her now rheumy diagnosed her within 2 minutes! She was 3 at the time, she is 5 now. We are taking methotrexate and vioxx and folic acid. The mtx takes a while to start working and when he first put her on it, I got frustrated with the lack of response. So, if it comes down to it, don't get frustrated, it takes a good 3 months to work... Naprosyn was what was on when first diagnosed. But her rheumy put her in a study that tested the nap versus vioxx. In fact the study is almost over and her next visit is May and they are going to take her off vioxx for 2 weeks to see how she reacts without it. I am very stressed over this, but hopefully all will go well. However, she has had a few bad flares. I am beginning to think her wonder drug is Tylenol. LOL... Good luck, and keep in touch Theresa-West Palm Beach, FL

[Guest guest]

Theresa,I hope all goes well,are they going to replace it with something

else?My friends daughter is systemic on Enbrel and MTX and got off the

steroids, after doing good for a few months she started giving the Ibuprofin

only if her daughter needed it.The rheumy new immediately after getting

her labs back that she hadnt been taking it reguarly.Mom got in a whole

lot of trouble and was told not only does it help the joints it also keeps

the organs under control. Becki and 3systemic

Georgina wrote:

Hi

Theresa, I know you

must be feeling nervous about discontinuing the Vioxx. I hope it all works

out okay and doesn't cause a flare-up. Just wanted you to know

that you and your daughter will be in our thoughts. Aloha,

Georgina

----- Original Message -----

From:

Theresa

Kuhn

Vicky, my daughter had the same exact symptoms.

Only, there was not one pediatrician who knew what it was. After

her fever shot up to 106 and the rash was prominent all over her body,

did they admit her to the hospital. I look back now and think, how

dumb of me not to see the signs, but we were in this hospital for 2 weeks

until her now rheumy diagnosed her within 2 minutes! She was 3 at

the time, she is 5 now. We are taking methotrexate and vioxx and

folic acid. The mtx takes a while to start working and when he first

put her on it, I got frustrated with the lack of response. So, if

it comes down to it, don't get frustrated, it takes a good 3 months to

work... Naprosyn was what was on when first diagnosed.

But her rheumy put her in a study that tested the nap versus vioxx.

In fact the study is almost over and her next visit is May and they are

going to take her off vioxx for 2 weeks to see how she reacts without it.

I am very stressed over this, but hopefully all will go well. However,

she has had a few bad flares. I am beginning to think her wonder

drug is Tylenol. LOL... Good luck, and keep in touch

Theresa-West Palm Beach, FL

[Guest guest]

Thank you, but now that I have read some of these emails, I am very concerned, not only for her well being, but for the medication expense. is in a study, so the medicine was provided for us. What happens when she off the meds and may/maynot have to go on medication. We are now dealing with the expense of it all. I know that most of you or your children take metho and folic acid, but is taking Vioxx not Enbrel. I guess I should just wait and cross that bridge when I get there Huh?

Theresa -WPB, FL (systemic @3)

>From: Allan Larson

>Reply- > >Subject: Re: Systemic Onset JRA >Date: Tue, 30 Apr 2002 08:44:21 -0500 > >Theresa,I hope all goes well,are they going to replace it with something >else?My friends daughter is systemic on Enbrel and MTX and got off the >steroids, after doing good for a few months she started giving the >Ibuprofin only if her daughter needed it.The rheumy new immediately >after getting her labs back that she hadnt been taking it reguarly.Mom >got in a whole lot of trouble and was told not only does it help the >joints it also keeps the organs under control. Becki and >3systemic > >Georgina wrote: > > > Hi Theresa, I know you must be feeling nervous about discontinuing > > the Vioxx. I hope it all works out okay and doesn't cause a > > flare-up. Just wanted you to know that you and your daughter will be > > in our thoughts. Aloha, Georgina > > > > ----- Original Message ----- > > From: Theresa Kuhn > > Vicky, my daughter had the same exact symptoms. Only, > > there was not one pediatrician who knew what it was. After > > her fever shot up to 106 and the rash was prominent all over > > her body, did they admit her to the hospital. I look back > > now and think, how dumb of me not to see the signs, but we > > were in this hospital for 2 weeks until her now rheumy > > diagnosed her within 2 minutes! She was 3 at the time, she > > is 5 now. We are taking methotrexate and vioxx and folic > > acid. The mtx takes a while to start working and when he > > first put her on it, I got frustrated with the lack of > > response. So, if it comes down to it, don't get frustrated, > > it takes a good 3 months to work... Naprosyn was what > > was on when first diagnosed. But her rheumy put her > > in a study that tested the nap versus vioxx. In fact the > > study is almost over and her next visit is May and they are > > going to take her off vioxx for 2 weeks to see how she > > reacts without it. I am very stressed over this, but > > hopefully all will go well. However, she has had a few bad > > flares. I am beginning to think her wonder drug is > > Tylenol. LOL... Good luck, and keep in touch Theresa-West > > Palm Beach, FL > > > >

[Guest guest]

Theresa,dont panic.Take a deap breath and know things will be ok,your rheumy

wont let anything bad happen,I am sure if things go bad,rheumy will say

yep needs her Viox and give you a script.As for the cost,I know

I dont like it, and my creditors dont like it, but the meds come first,and

the doctor visits.It just has to be that way.Even with insurance it does

add up. takes OTC childrens Motrin 8 bottles at $6.00 a bottle a month,

doesnt take folate pills but a multi vitamin that has 400micrograms folic

acid $7.99 a bottle we use 2 a month,he is supposed to take a tums a day

for calcium,very cheap but he doesnt like them,so now I have to try Viactive

chews ,not cheap,but cheaper than osteoparosis.Gotta hate those steroids.His

MTX is weird $12 for 1 vial $19 for 2 or $24 for 4 vials,so I buy 4 vials

at a time,I dont think the MTX goes towards my drug deductable($100,was

$250)because its an injectable that is not insullin,and his Plaquenil is

$19.When the Enbrel comes in I have already figured it will cost roughly

$135 for 4vials.His pred comes in a bottle for $38 but it can last from

1 month to 3 months depending on if he has recently flaired or on a taper.On

top of it all my insurance went up 65% so that is tough.Just hang in there,you

will find a way to do what you have to.Will send good vibes your way.LOLL

Becki and 3systemic

Theresa Kuhn wrote:

Thank you, but now that I have read some

of these emails, I am very concerned, not only for her well being, but

for the medication expense. is in a study, so the medicine

was provided for us. What happens when she off the meds and may/maynot

have to go on medication. We are now dealing with the expense of

it all. I know that most of you or your children take metho and folic

acid, but is taking Vioxx not Enbrel. I guess I should just

wait and cross that bridge when I get there Huh?

Theresa -WPB, FL (systemic @3)>From: Allan Larson

>Reply-

>

>Subject: Re: Systemic Onset JRA

>Date: Tue, 30 Apr 2002 08:44:21 -0500

>

>Theresa,I hope all goes well,are they going to replace it with something

>else?My friends daughter is systemic on Enbrel and MTX and got off

the

>steroids, after doing good for a few months she started giving the

>Ibuprofin only if her daughter needed it.The rheumy new immediately

>after getting her labs back that she hadnt been taking it reguarly.Mom

>got in a whole lot of trouble and was told not only does it help the

>joints it also keeps the organs under control. Becki and

>3systemic

>

>Georgina wrote:

>

> > Hi Theresa, I know you must be feeling nervous about discontinuing

> > the Vioxx. I hope it all works out okay and doesn't cause a

> > flare-up. Just wanted you to know that you and your daughter will

be

> > in our thoughts. Aloha, Georgina

> >

> > ----- Original Message -----

> > From: Theresa Kuhn

> > Vicky, my daughter had the same exact symptoms. Only,

> > there was not one pediatrician who knew what it was. After

> > her fever shot up to 106 and the rash was prominent all over

> > her body, did they admit her to the hospital. I look back

> > now and think, how dumb of me not to see the signs, but we

> > were in this hospital for 2 weeks until her now rheumy

> > diagnosed her within 2 minutes! She was 3 at the time, she

> > is 5 now. We are taking methotrexate and vioxx and folic

> > acid. The mtx takes a while to start working and when he

> > first put her on it, I got frustrated with the lack of

> > response. So, if it comes down to it, don't get frustrated,

> > it takes a good 3 months to work... Naprosyn was what

> > was on when first diagnosed. But her rheumy put her

> > in a study that tested the nap versus vioxx. In fact the

> > study is almost over and her next visit is May and they are

> > going to take her off vioxx for 2 weeks to see how she

> > reacts without it. I am very stressed over this, but

> > hopefully all will go well. However, she has had a few bad

> > flares. I am beginning to think her wonder drug is

> > Tylenol. LOL... Good luck, and keep in touch Theresa-West

> > Palm Beach, FL

> >

> >

[Guest guest]

Hi, I dont mean to but in or anything but I just wanted to say that we get nas enbrel covered by medicaid and we don't have to pay anything for a doctor or medicine. I dont know if it is because we are low income or because na gets disability or because we go to shriners, I dont know? Jona,mom of na2 poly

Allan Larson <alarson1@...> wrote: Theresa,dont panic.Take a deap breath and know things will be ok,yourrheumy wont let anything bad happen,I am sure if things go bad,rheumywill say yep needs her Viox and give you a script.As for thecost,I know I dont like it, and my creditors dont like it, but the medscome first,and the doctor visits.It just has to be that way.Even withinsurance it does add up. takes OTC childrens Motrin 8 bottles at$6.00 a bottle a month, doesnt take folate pills but a multivitamin that has 400micrograms folic acid $7.99 a bottle we use 2 amonth,he is supposed to take a tums a day for calcium,very cheap but hedoesnt like them,so now I have to try Viactive chews ,not cheap,butcheaper than osteoparosis.Gotta hate those steroids.His MTX is weird $12for 1 vial $19 for 2 or $24 for 4 vials,so I buy 4 vials at a time,Idont think the MTX goes towards my drug deductable($100,was $250)becauseits an injectable that is not insullin,and his Plaquenil is $19.When theEnbrel comes in I have already figured it will cost roughly $135 for4vials.His pred comes in a bottle for $38 but it can last from 1 monthto 3 months depending on if he has recently flaired or on a taper.On topof it all my insurance went up 65% so that is tough.Just hang inthere,you will find a way to do what you have to.Will send good vibesyour way.LOLL Becki and 3systemicTheresa Kuhn wrote:>> Thank you, but now that I have read some of these emails, I am very> concerned, not only for her well being, but for the medication> expense. is in a study, so the medicine was provided for us.> What happens when she off the meds and may/maynot have to go on> medication. We are now dealing with the expense of it all. I know> that most of you or your children take metho and folic acid, but> is taking Vioxx not Enbrel. I guess I should just wait and> cross that bridge when I get there Huh?>> Theresa -WPB, FL (systemic @3)>From: Allan Larson> >Reply- > > > >Subject: Re: Systemic Onset JRA> >Date: Tue, 30 Apr 2002 08:44:21 -0500> >> >Theresa,I hope all goes well,are they going to replace it with> something> >else?My friends daughter is systemic on Enbrel and MTX and got off> the> >steroids, after doing good for a few months she started giving the> >Ibuprofin only if her daughter needed it.The rheumy new immediately> >after getting her labs back that she hadnt been taking it> reguarly.Mom> >got in a whole lot of trouble and was told not only does it help the> >joints it also keeps the organs under control. Becki and> >3systemic> >> >Georgina wrote:> >> > > Hi Theresa, I know you must be feeling nervous about discontinuing>> > > the Vioxx. I hope it all works out okay and doesn't cause a> > > flare-up. Just wanted you to know that you and your daughter will> be> > > in our thoughts. Aloha, Georgina> > >> > > ----- Original Message -----> > > From: Theresa Kuhn> > > Vicky, my daughter had the same exact symptoms. Only,> > > there was not one pediatrician who knew what it was. After> > > her fever shot up to 106 and the rash was prominent all over> > > her body, did they admit her to the hospital. I look back> > > now and think, how dumb of me not to see the signs, but we> > > were in this hospital for 2 weeks until her now rheumy> > > diagnosed her within 2 minutes! She was 3 at the time, she> > > is 5 now. We are taking methotrexate and vioxx and folic> > > acid. The mtx takes a while to start working and when he> > > first put her on it, I got frustrated with the lack of> > > response. So, if it comes down to it, don't get frustrated,> > > it takes a good 3 months to work... Naprosyn was what> > > was on when first diagnosed. But her rheumy put her> > > in a study that tested the nap versus vioxx. In fact the> > > study is almost over and her next visit is May and they are> > > going to take her off vioxx for 2 weeks to see how she> > > reacts without it. I am very stressed over this, but> > > hopefully all will go well. However, she has had a few bad> > > flares. I am beginning to think her wonder drug is> > > Tylenol. LOL... Good luck, and keep in touch Theresa-West> > > Palm Beach, FL> > >> > >

[Guest guest]

Theresa,

Last spring my 15 year old daughter developed a severe case of mono. Her liver counts were extremely high. Her ped said she had never seen hepatitis associated with mono before, but when she started researching it, she discovered it is a rare side effect. Kelsey recovered fine, after 10 days in the hospital. We have been told that this was not like any other form of hepatitis in that it was not infectious, and will have no effect on her future. Hope your daughter feels better soon. Push fluids no matter what!

Christy

[Guest guest]

Okay, I am now panicking. Here is the latest on ... She has mono, which has affected her liver (they think) and strep. My god, she is so sick and I am so panicky. I feel like if I am not with her every second, something bad is going to happen. I am at work now, but I wish I were there with her. Any how, her rheumy is concerned that it could be the mtx and the vioxx that have caused the problems with her liver and he has taken her off all meds indefinitely! Help me stay calm, cuz I am about to burst!!!

Theresa -West Palm Beach, FL (-Systemic 5)

>From: Allan Larson

>Reply- > >Subject: Re: Systemic Onset JRA >Date: Fri, 03 May 2002 08:57:41 -0500 > >Theresa,dont panic.Take a deap breath and know things will be ok,your >rheumy wont let anything bad happen,I am sure if things go bad,rheumy >will say yep needs her Viox and give you a script.As for the >cost,I know I dont like it, and my creditors dont like it, but the meds >come first,and the doctor visits.It just has to be that way.Even with >insurance it does add up. takes OTC childrens Motrin 8 bottles at >$6.00 a bottle a month, doesnt take folate pills but a multi >vitamin that has 400micrograms folic acid $7.99 a bottle we use 2 a >month,he is supposed to take a tums a day for calcium,very cheap but he >doesnt like them,so now I have to try Viactive chews ,not cheap,but >cheaper than osteoparosis.Gotta hate those steroids.His MTX is weird $12 >for 1 vial $19 for 2 or $24 for 4 vials,so I buy 4 vials at a time,I >dont think the MTX goes towards my drug deductable($100,was $250)because >its an injectable that is not insullin,and his Plaquenil is $19.When the >Enbrel comes in I have already figured it will cost roughly $135 for >4vials.His pred comes in a bottle for $38 but it can last from 1 month >to 3 months depending on if he has recently flaired or on a taper.On top >of it all my insurance went up 65% so that is tough.Just hang in >there,you will find a way to do what you have to.Will send good vibes >your way.LOLL Becki and 3systemic > >Theresa Kuhn wrote: > > > > > Thank you, but now that I have read some of these emails, I am very > > concerned, not only for her well being, but for the medication > > expense. is in a study, so the medicine was provided for us. > > What happens when she off the meds and may/maynot have to go on > > medication. We are now dealing with the expense of it all. I know > > that most of you or your children take metho and folic acid, but > > is taking Vioxx not Enbrel. I guess I should just wait and > > cross that bridge when I get there Huh? > > > > Theresa -WPB, FL (systemic @3)>From: Allan Larson > > >Reply- > > > > > >Subject: Re: Systemic Onset JRA > > >Date: Tue, 30 Apr 2002 08:44:21 -0500 > > > > > >Theresa,I hope all goes well,are they going to replace it with > > something > > >else?My friends daughter is systemic on Enbrel and MTX and got off > > the > > >steroids, after doing good for a few months she started giving the > > >Ibuprofin only if her daughter needed it.The rheumy new immediately > > >after getting her labs back that she hadnt been taking it > > reguarly.Mom > > >got in a whole lot of trouble and was told not only does it help the > > >joints it also keeps the organs under control. Becki and > > >3systemic > > > > > >Georgina wrote: > > > > > > > Hi Theresa, I know you must be feeling nervous about discontinuing > > > > > > the Vioxx. I hope it all works out okay and doesn't cause a > > > > flare-up. Just wanted you to know that you and your daughter will > > be > > > > in our thoughts. Aloha, Georgina > > > > > > > > ----- Original Message ----- > > > > From: Theresa Kuhn > > > > Vicky, my daughter had the same exact symptoms. Only, > > > > there was not one pediatrician who knew what it was. After > > > > her fever shot up to 106 and the rash was prominent all over > > > > her body, did they admit her to the hospital. I look back > > > > now and think, how dumb of me not to see the signs, but we > > > > were in this hospital for 2 weeks until her now rheumy > > > > diagnosed her within 2 minutes! She was 3 at the time, she > > > > is 5 now. We are taking methotrexate and vioxx and folic > > > > acid. The mtx takes a while to start working and when he > > > > first put her on it, I got frustrated with the lack of > > > > response. So, if it comes down to it, don't get frustrated, > > > > it takes a good 3 months to work... Naprosyn was what > > > > was on when first diagnosed. But her rheumy put her > > > > in a study that tested the nap versus vioxx. In fact the > > > > study is almost over and her next visit is May and they are > > > > going to take her off vioxx for 2 weeks to see how she > > > > reacts without it. I am very stressed over this, but > > > > hopefully all will go well. However, she has had a few bad > > > > flares. I am beginning to think her wonder drug is > > > > Tylenol. LOL... Good luck, and keep in touch Theresa-West > > > > Palm Beach, FL > > > > > > > >

[Guest guest]

Hi Theresa. Sure wish I could help somehow - but you are in my thoughts and

prayers.

Val

Rob's Mom (4,systemic)

In a message dated Tue, 7 May 2002  2:00:31 PM Eastern Daylight Time, " Theresa

Kuhn " <bubash797@...> writes:

>

>

>Okay, I am now panicking.nbsp; Here is the latest on ...nbsp; She has

mono, which has affected her liver (they think) and strep.nbsp; My god, she is

so sick and I am so panicky.nbsp; I feel like if I am not with her every second,

something bad is going to happen.nbsp; I am at work now, but I wish I were there

with her.nbsp; Any how, her rheumy is concerned that it could be the mtx and the

vioxx that have caused the problems with her liver and he has taken her off all

meds indefinitely!nbsp; Help me stay calm, cuz I am about to burst!!!nbsp;nbsp;

>

>

>

>Theresa -West Palm Beach, FLnbsp; (-Systemic 5)

>

>

>

>  gt;From: Allan Larson gt;Reply- gt;To:

gt;Subject: Re: Systemic Onset JRA gt;Date: Fri,

03 May 2002 08:57:41 -0500 gt; gt;Theresa,dont panic.Take a deap breath and know

things will be ok,your gt;rheumy wont let anything bad happen,I am sure if

things go bad,rheumy gt;will say yep needs her Viox and give you a

script.As for the gt;cost,I know I dont like it, and my creditors dont like it,

but the meds gt;come first,and the doctor visits.It just has to be that way.Even

with gt;insurance it does add up. takes OTC childrens Motrin 8 bottles at

gt;$6.00 a bottle a month, doesnt take folate pills but a multi gt;vitamin

that has 400micrograms folic acid $7.99 a bottle we use 2 a gt;month,he is

supposed to take a tums a day for calcium,very cheap but he gt;doesnt like

them,so now I have to try Viactive chews ,not cheap,but gt;cheaper than

osteoparosis.Gotta hate those steroids.His MTX is weird $12 gt;for 1 vial $19

for 2 or $24 for 4 vials,so I buy 4 vials at a time,I gt;dont think the MTX goes

towards my drug deductable($100,was $250)because gt;its an injectable that is

not insullin,and his Plaquenil is $19.When the gt;Enbrel comes in I have already

figured it will cost roughly $135 for gt;4vials.His pred comes in a bottle for

$38 but it can last from 1 month gt;to 3 months depending on if he has recently

flaired or on a taper.On top gt;of it all my insurance went up 65% so that is

tough.Just hang in gt;there,you will find a way to do what you have to.Will send

good vibes gt;your way.LOLL Becki and 3systemic gt; gt;Theresa Kuhn wrote:

gt; gt; gt; gt; gt; Thank you, but now that I have read some of these emails, I

am very gt; gt; concerned, not only for her well being, but for the medication

gt; gt; expense. is in a study, so the medicine was provided for us. gt;

gt; What happens when she off the meds and may/maynot have to go on gt; gt;

medication. We are now dealing with the expense of it all. I know gt; gt; that

most of you or your children take metho and folic acid, but gt; gt; is

taking Vioxx not Enbrel. I guess I should just wait and gt; gt; cross that

bridge when I get there Huh? gt; gt; gt; gt; Theresa -WPB, FL (systemic

@3)gt;From: Allan Larson gt; gt; gt;Reply- gt; gt;

gt; gt; gt; gt;Subject: Re: Systemic Onset JRA

gt; gt; gt;Date: Tue, 30 Apr 2002 08:44:21 -0500 gt; gt; gt; gt; gt;

gt;Theresa,I hope all goes well,are they going to replace it with gt; gt;

something gt; gt; gt;else?My friends daughter is systemic on Enbrel and MTX and

got off gt; gt; the gt; gt; gt;steroids, after doing good for a few months she

started giving the gt; gt; gt;Ibuprofin only if her daughter needed it.The

rheumy new immediately gt; gt; gt;after getting her labs back that she hadnt

been taking it gt; gt; reguarly.Mom gt; gt; gt;got in a whole lot of trouble and

was told not only does it help the gt; gt; gt;joints it also keeps the organs

under control. Becki and gt; gt; gt;3systemic gt; gt; gt; gt; gt;

gt;Georgina wrote: gt; gt; gt; gt; gt; gt; gt; Hi Theresa, I know you must be

feeling nervous about discontinuing gt; gt; gt; gt; gt; gt; the Vioxx. I hope it

all works out okay and doesn't cause a gt; gt; gt; gt; flare-up. Just wanted you

to know that you and your daughter will gt; gt; be gt; gt; gt; gt; in our

thoughts. Aloha, Georgina gt; gt; gt; gt; gt; gt; gt; gt; ----- Original Message

----- gt; gt; gt; gt; From: Theresa Kuhn gt; gt; gt; gt; Vicky, my daughter had

the same exact symptoms. Only, gt; gt; gt; gt; there was not one pediatrician

who knew what it was. After gt; gt; gt; gt; her fever shot up to 106 and the

rash was prominent all over gt; gt; gt; gt; her body, did they admit her to the

hospital. I look back gt; gt; gt; gt; now and think, how dumb of me not to see

the signs, but we gt; gt; gt; gt; were in this hospital for 2 weeks until her

now rheumy gt; gt; gt; gt; diagnosed her within 2 minutes! She was 3 at the

time, she gt; gt; gt; gt; is 5 now. We are taking methotrexate and vioxx and

folic gt; gt; gt; gt; acid. The mtx takes a while to start working and when he

gt; gt; gt; gt; first put her on it, I got frustrated with the lack of gt; gt;

gt; gt; response. So, if it comes down to it, don't get frustrated, gt; gt; gt;

gt; it takes a good 3 months to work... Naprosyn was what gt; gt; gt; gt;

was on when first diagnosed. But her rheumy put her gt; gt; gt; gt; in a study

that tested the nap versus vioxx. In fact the gt; gt; gt; gt; study is almost

over and her next visit is May and they are gt; gt; gt; gt; going to take her

off vioxx for 2 weeks to see how she gt; gt; gt; gt; reacts without it. I am

very stressed over this, but gt; gt; gt; gt; hopefully all will go well.

However, she has had a few bad gt; gt; gt; gt; flares. I am beginning to think

her wonder drug is gt; gt; gt; gt; Tylenol. LOL... Good luck, and keep in touch

Theresa-West gt; gt; gt; gt; Palm Beach, FL gt; gt; gt; gt; gt; gt; gt; gt;

[Guest guest]

Thanks for the info! I do hope we dont have to visit the hospital though. I am pushing fluids so much that she is going to float. I never heard of a 5 year old contracting this. They are going to keep taking blood and checking her liver count. I am as nervous as can be. Her rheumy took her off all meds and that is what scares me too. what if she goes into a flare not related to the infection? how would i tell the difference?

Theresa- West Palm Beach, FL (rachel 5, systemic onset)

>From: gazelle34@... >Reply- > >Subject: Re: Systemic Onset JRA >Date: Tue, 7 May 2002 15:36:05 EDT > >Theresa, > >Last spring my 15 year old daughter developed a severe case of mono. Her >liver counts were extremely high. Her ped said she had never seen hepatitis >associated with mono before, but when she started researching it, she >discovered it is a rare side effect. Kelsey recovered fine, after 10 days in >the hospital. We have been told that this was not like any other form of >hepatitis in that it was not infectious, and will have no effect on her >future. Hope your daughter feels better soon. Push fluids no matter what! > >Christy Join the world’s largest e-mail service with MSN Hotmail. Click Here

[Guest guest]

thank you for that.

>From: carneyval@... >Reply- > >Subject: Re: Re: Systemic Onset JRA >Date: Tue, 07 May 2002 16:01:41 -0400 > >Hi Theresa. Sure wish I could help somehow - but you are in my thoughts and prayers. >Val >Rob's Mom (4,systemic) > >In a message dated Tue, 7 May 2002 2:00:31 PM Eastern Daylight Time, "Theresa Kuhn" writes: > > > > > > >Okay, I am now panicking.nbsp; Here is the latest on ...nbsp; She has mono, which has affected her liver (they think) and strep.nbsp; My god, she is so sick and I am so panicky.nbsp; I feel like if I am not with her every second, something bad is going to happen.nbsp; I am at work now, but I wish I were there with her.nbsp; Any how, her rheumy is concerned that it could be the mtx and the vioxx that have caused the problems with her liver and he has taken her off all meds indefinitely!nbsp; Help me stay calm, cuz I am about to burst!!!nbsp;nbsp; > > > > > > > >Theresa -West Palm Beach, FLnbsp; (-Systemic 5) > > > > > > > > gt;From: Allan Larson gt;Reply- gt; gt;Subject: Re: Systemic Onset JRA gt;Date: Fri, 03 May 2002 08:57:41 -0500 gt; gt;Theresa,dont panic.Take a deap breath and know things will be ok,your gt;rheumy wont let anything bad happen,I am sure if things go bad,rheumy gt;will say yep needs her Viox and give you a script.As for the gt;cost,I know I dont like it, and my creditors dont like it, but the meds gt;come first,and the doctor visits.It just has to be that way.Even with gt;insurance it does add up. takes OTC childrens Motrin 8 bottles at gt;$6.00 a bottle a month, doesnt take folate pills but a multi gt;vitamin that has 400micrograms folic acid $7.99 a bottle we use 2 a gt;month,he is supposed to take a tums a day for calcium,very cheap but he gt;doesnt like them,so now I have to try Viactive chews ,not cheap,but gt;cheaper than osteoparosis.Gotta hate those steroids.His MTX is weird $12 gt;for 1 vial $19 for 2 or $24 for 4 vials,so I buy 4 vials at a time,I gt;dont think the MTX goes towards my drug deductable($100,was $250)because gt;its an injectable that is not insullin,and his Plaquenil is $19.When the gt;Enbrel comes in I have already figured it will cost roughly $135 for gt;4vials.His pred comes in a bottle for $38 but it can last from 1 month gt;to 3 months depending on if he has recently flaired or on a taper.On top gt;of it all my insurance went up 65% so that is tough.Just hang in gt;there,you will find a way to do what you have to.Will send good vibes gt;your way.LOLL Becki and 3systemic gt; gt;Theresa Kuhn wrote: gt; gt; gt; gt; gt; Thank you, but now that I have read some of these emails, I am very gt; gt; concerned, not only for her well being, but for the medication gt; gt; expense. is in a study, so the medicine was provided for us. gt; gt; What happens when she off the meds and may/maynot have to go on gt; gt; medication. We are now dealing with the expense of it all. I know gt; gt; that most of you or your children take metho and folic acid, but gt; gt; is taking Vioxx not Enbrel. I guess I should just wait and gt; gt; cross that bridge when I get there Huh? gt; gt; gt; gt; Theresa -WPB, FL (systemic @3)gt;From: Allan Larson gt; gt; gt;Reply- gt; gt; gt; gt; gt; gt;Subject: Re: Systemic Onset JRA gt; gt; gt;Date: Tue, 30 Apr 2002 08:44:21 -0500 gt; gt; gt; gt; gt; gt;Theresa,I hope all goes well,are they going to replace it with gt; gt; something gt; gt; gt;else?My friends daughter is systemic on Enbrel and MTX and got off gt; gt; the gt; gt; gt;steroids, after doing good for a few months she started giving the gt; gt; gt;Ibuprofin only if her daughter needed it.The rheumy new immediately gt; gt; gt;after getting her labs back that she hadnt been taking it gt; gt; reguarly.Mom gt; gt; gt;got in a whole lot of trouble and was told not only does it help the gt; gt; gt;joints it also keeps the organs under control. Becki and gt; gt; gt;3systemic gt; gt; gt; gt; gt; gt;Georgina wrote: gt; gt; gt; gt; gt; gt; gt; Hi Theresa, I know you must be feeling nervous about discontinuing gt; gt; gt; gt; gt; gt; the Vioxx. I hope it all works out okay and doesn't cause a gt; gt; gt; gt; flare-up. Just wanted you to know that you and your daughter will gt; gt; be gt; gt; gt; gt; in our thoughts. Aloha, Georgina gt; gt; gt; gt; gt; gt; gt; gt; ----- Original Message ----- gt; gt; gt; gt; From: Theresa Kuhn gt; gt; gt; gt; Vicky, my daughter had the same exact symptoms. Only, gt; gt; gt; gt; there was not one pediatrician who knew what it was. After gt; gt; gt; gt; her fever shot up to 106 and the rash was prominent all over gt; gt; gt; gt; her body, did they admit her to the hospital. I look back gt; gt; gt; gt; now and think, how dumb of me not to see the signs, but we gt; gt; gt; gt; were in this hospital for 2 weeks until her now rheumy gt; gt; gt; gt; diagnosed her within 2 minutes! She was 3 at the time, she gt; gt; gt; gt; is 5 now. We are taking methotrexate and vioxx and folic gt; gt; gt; gt; acid. The mtx takes a while to start working and when he gt; gt; gt; gt; first put her on it, I got frustrated with the lack of gt; gt; gt; gt; response. So, if it comes down to it, don't get frustrated, gt; gt; gt; gt; it takes a good 3 months to work... Naprosyn was what gt; gt; gt; gt; was on when first diagnosed. But her rheumy put her gt; gt; gt; gt; in a study that tested the nap versus vioxx. In fact the gt; gt; gt; gt; study is almost over and her next visit is May and they are gt; gt; gt; gt; going to take her off vioxx for 2 weeks to see how she gt; gt; gt; gt; reacts without it. I am very stressed over this, but gt; gt; gt; gt; hopefully all will go well. However, she has had a few bad gt; gt; gt; gt; flares. I am beginning to think her wonder drug is gt; gt; gt; gt; Tylenol. LOL... Good luck, and keep in touch Theresa-West gt; gt; gt; gt; Palm Beach, FL gt; gt; gt; gt; gt; gt; gt; gt;

[Guest guest]

Theresa , Breath deep and clear your head, Mono is often hard on the liver but yes Metho and Vioxx can be too, especially since the mono is present. So going off the Metho and Vioxx would seem like the first step to me. I know that scares you because then what is the JRA going to do, don't cross bridges before you get to them ! Easy to say , hard to do. The liver at least is an organ that has a huge capacity to heal itself. I know and have gone through giving up all meds myself and all is fine with the liver again now. Has she been tested for Hepatitis? It can come along with the mono and be the problem. Bless you both and I'll keep u both in my prayers !!:)Tree:) Re: Systemic Onset JRA > > >Date: Tue, 30 Apr 2002 08:44:21 -0500 > > > > > >Theresa,I hope all goes well,are they going to replace it with > > something > > >else?My friends daughter is systemic on Enbrel and MTX and got off > > the > > >steroids, after doing good for a few months she started giving the > > >Ibuprofin only if her daughter needed it.The rheumy new immediately > > >after getting her labs back that she hadnt been taking it > > reguarly.Mom > > >got in a whole lot of trouble and was told not only does it help the > > >joints it also keeps the organs under control. Becki and > > >3systemic > > > > > >Georgina wrote: > > > > > > > Hi Theresa, I know you must be feeling nervous about discontinuing > > > > > > the Vioxx. I hope it all works out okay and doesn't cause a > > > > flare-up. Just wanted you to know that you and your daughter will > > be > > > > in our thoughts. Aloha, Georgina > > > > > > > > ----- Original Message ----- > > > > From: Theresa Kuhn > > > > Vicky, my daughter had the same exact symptoms. Only, > > > > there was not one pediatrician who knew what it was. After > > > > her fever shot up to 106 and the rash was prominent all over > > > > her body, did they admit her to the hospital. I look back > > > > now and think, how dumb of me not to see the signs, but we > > > > were in this hospital for 2 weeks until her now rheumy > > > > diagnosed her within 2 minutes! She was 3 at the time, she > > > > is 5 now. We are taking methotrexate and vioxx and folic > > > > acid. The mtx takes a while to start working and when he > > > > first put her on it, I got frustrated with the lack of > > > > response. So, if it comes down to it, don't get frustrated, > > > > it takes a good 3 months to work... Naprosyn was what > > > > was on when first diagnosed. But her rheumy put her > > > > in a study that tested the nap versus vioxx. In fact the > > > > study is almost over and her next visit is May and they are > > > > going to take her off vioxx for 2 weeks to see how she > > > > reacts without it. I am very stressed over this, but > > > > hopefully all will go well. However, she has had a few bad > > > > flares. I am beginning to think her wonder drug is > > > > Tylenol. LOL... Good luck, and keep in touch Theresa-West > > > > Palm Beach, FL > > > > > > > >

[Guest guest]

She has been tested for Hepatitis and that came out positive. But, the Pediatrician said that hepatitis is a general word for liver problems. It couldve been brought on by the mono. So, now my daughter is fighting mono, hep, strep and the JRA. God help her. She didnt seem to be too bad this morning, I am keeping fingers and toes crossed. Thank you for your support and yes, my husband says the same thing about taking it one day at a time and not worry about what is going to happen. I am the nutso one, he is the level headed one...

Thanks again!

Theresa West Palm Beach, FL ( -5 Systemic)

>From: "theresa sappenfield"

>Reply- >" "

>Subject: Re: Systemic Onset JRA >Date: Tue, 7 May 2002 23:57:50 -0400 > >Theresa , Breath deep and clear your head, Mono is often hard on the liver but yes Metho and Vioxx can be too, especially since the mono is present. So going off the Metho and Vioxx would seem like the first step to me. I know that scares you because then what is the JRA going to do, don't cross bridges before you get to them ! Easy to say , hard to do. The liver at least is an organ that has a huge capacity to heal itself. I know and have gone through giving up all meds myself and all is fine with the liver again now. Has she been tested for Hepatitis? It can come along with the mono and be the problem. Bless you both and I'll keep u both in my prayers !!:)Tree:) > > > Re: Systemic Onset JRA > > > >Date: Tue, 30 Apr 2002 08:44:21 -0500 > > > > > > > >Theresa,I hope all goes well,are they going to replace it with > > > something > > > >else?My friends daughter is systemic on Enbrel and MTX and got off > > > the > > > >steroids, after doing good for a few months she started giving the > > > >Ibuprofin only if her daughter needed it.The rheumy new immediately > > > >after getting her labs back that she hadnt been taking it > > > reguarly.Mom > > > >got in a whole lot of trouble and was told not only does it help the > > > >joints it also keeps the organs under control. Becki and > > > >3systemic > > > > > > > >Georgina wrote: > > > > > > > > > Hi Theresa, I know you must be feeling nervous about discontinuing > > > > > > > > the Vioxx. I hope it all works out okay and doesn't cause a > > > > > flare-up. Just wanted you to know that you and your daughter will > > > be > > > > > in our thoughts. Aloha, Georgina > > > > > > > > > > ----- Original Message ----- > > > > > From: Theresa Kuhn > > > > > Vicky, my daughter had the same exact symptoms. Only, > > > > > there was not one pediatrician who knew what it was. After > > > > > her fever shot up to 106 and the rash was prominent all over > > > > > her body, did they admit her to the hospital. I look back > > > > > now and think, how dumb of me not to see the signs, but we > > > > > were in this hospital for 2 weeks until her now rheumy > > > > > diagnosed her within 2 minutes! She was 3 at the time, she > > > > > is 5 now. We are taking methotrexate and vioxx and folic > > > > > acid. The mtx takes a while to start working and when he > > > > > first put her on it, I got frustrated with the lack of > > > > > response. So, if it comes down to it, don't get frustrated, > > > > > it takes a good 3 months to work... Naprosyn was what > > > > > was on when first diagnosed. But her rheumy put her > > > > > in a study that tested the nap versus vioxx. In fact the > > > > > study is almost over and her next visit is May and they are > > > > > going to take her off vioxx for 2 weeks to see how she > > > > > reacts without it. I am very stressed over this, but > > > > > hopefully all will go well. However, she has had a few bad > > > > > flares. I am beginning to think her wonder drug is > > > > > Tylenol. LOL... Good luck, and keep in touch Theresa-West > > > > > Palm Beach, FL > > > > > > > > > >

[Guest guest]

Hi Christy,

How much joint pain has Abby had with the JRA, is it centralized or all over? I know every kid is different. They started Jess on MTX, pill form, only 7.5 mg a week. Her CRP level has gone done to almost normal, but the doctor wanted to see if she could get this thing gone, so MTX it is. She had her first does on Friday and no side effects from it. I am keeping my fingers crossed.

Thanks for you support.

Vicky ( 7, systemic)

gazelle34@... wrote: Vicky,Welcome to our group. Your experience with lack of joint pain and just fever and rash was ours as well. The joint pain was a long time coming and the rash stuck around for a good 18 months. My daughter Abbie (12 systemic) was diagnosed in Feb. 2000 after getting sick in Oct. 1999. We always thought that was a quick diagnosis, but yours was much faster. Believe it or not, that's a good thing.As for methotrexate, that in my book is a good thing. It has worked well for quite a while. Abbie experienced classic nausea when she was on an oral dose (as high as 25 mg/week), but switched to sub q injections when it had to go higher. Now the only side effect is what can only be described as a thickening of her saliva, which causes a bad taste in her mouth. So we always give it to her during supper.You are fortunate that your daughter is not on prednisone. Hopefully the mtx can gain the control you need and you can avoid that. Good luck, and again, welcome.Christy (Abbie 12, systemic)