Update on

[Guest guest]

This is great that had a good visit to the dr. Sounded like the

good out weighed the bad, so that is a plus.

I am glad her grandmother went with you two..maybe this will let them know

on that side..how serious jra is!

You did a smart thing by not canceling her appt. she definitely needs to go

to them. I know kids get use to the pain of jra growing up with it..but that

is strange she isn't having any as much as she is flaring..sometimes i know

Tab will say she isn't hurting..even when the docs poke on her just to get

out of there and nothing else done..but hey kids are tough also..

In my opinion, I think your ex needs to go to the appointment with you..not

to be smart..but somebody needs to make him and his wife realize that you

can't ignore this disease and it goes away..it doesn't.

It takes alot of trials and errors to figure out what is the best way to

fight it..and every child is different when it comes to what meds work. You

sound like a great mother and I am glad that she has you in her corner...I

know from raising Tab what jra can do..I see the damage it has done to her

body as far as deformities of sort but in the same sense..it has made her

strong, compassionate, and an attitude not to let this disease run her life.

So please keep at him to go with you...if not..maybe you can get him some

pamphlets from the arthritis foundation to give him, so he can understand

jra better.

Hope I didn't offend you, I just want the best for our children who have to

live with this disease.

take care

karen(tab17..poly)

From: " jbelle831 " <jbelle831@...>

Reply-

Subject: Update on

Date: Fri, 26 Jul 2002 03:23:54 -0000

Good Evening everyone!!

Just wanted to let everyone know how things went wed, july 24. This

was 's (MK's) 2nd rheumy visit. Some good news and some

bad news. MK is 10 yrs old and was diagnosed in june with jra. The

dr is unsure of what type because she shows symptoms of 2 kinds -

mainly she thinks it's systemic.

Anyway, the good news.... for our 1st visit I had asked the dr what

was the long term of bringing MK back. the dr said she would

probably need to see mk every 6 wks for a while. well after this

visit - mk doesn't have to go back for 3 months - yeah!! the dr has

seen great improvement in her - but still has to keep the jra under

control.

the bad news.... it really isn't all that bad - but enough to be

concerned about. on our 1st visit several xrays were done. the dr

said they all came back fine - except her hands - but she had

expected that. she said her hands are becoming bony - i asked what

that meant - what she told me that it seems that what has already

happened to her hands is irreversable but hopefully have caught it in

time to not progress - xrays taken in a year to see. mk has muscle

wasting in her lower arms - from elbows to wrists. her gait is

better but still VERY limited rom in left ankle. so continue pt and

see about strengthening arms with help from therapist.

her mtx was increased from 10mg to 15mg. she was taking 3.8cc

ibuprofen 3xday. this has been very hard since mk is so active in the

summer - pool, camp, busy, busy, busy. so i asked the dr what could

we do to make it a 2x day dose - so she put her on 250mg naprosen and

stop the ibuprofen. we'll see how that goes.

i thank god that (knock on wood) mk has not had any side effects from

the meds. the strange thing is that although her hands, knees, and

ankles are swollen and inflammed, mk is not in any pain. even when

the dr exams her and pokes and prodes all her joints mk says nothing

hurts - this puzzles the dr i think. mk does have pain when they

mess with her left foot.

more good news.... mk gained 4 pounds in 6 weeks - yeah - she

needed to. she is only 66 pounds - so every little bit helps. she

is 4'5 " and VERY petite. the extra weight is a blessing.

Oh yeah, her grandmother (dad's mom) went with us also. I'm not sure

if it helped or not. But at least she got to meet the dr and see

where mk is going. the night before mk's appt her dad told me i

needed to cancel her appt. he said she was doing soooo well that she

didn't need to go back. i told him the dr needed to see how she has

progressed, she may want to change some things, and of course the dr

did.

sorry to go on, but wanted all to know mk is doing better.

thanks

ita & (10 systemic)

_________________________________________________________________

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[Guest guest]

ita-

Glad to hear MK is doing so much better. What great news!!

Diane (, 3, pauci)

[Guest guest]

ita, I'm so happy to hear that is doing so well, no pain,

that's amazing! Great to hear some good news! Big hugs to you both,

Ellie and Riley 4 poly

[Guest guest]

Hi ita,

I'm glad to hear 's appt went well. And I'm very glad that you

explained to her Dad how important it is that she continues to have regular

exams to monitor the condition, even if she appears to be doing well at the

moment. I'm glad you were able to make those changes with the meds. An easier

dosing schedule will help with compliance and as long as she is tolerating the

meds well, an increase in MTX may very well be what's needed to stop the

progression of joint deterioration in her hands and ankle. I'm happy about the

weight increase, too. These small steps do add up over time. Let's hope that

positive things continue happening.

All the best,

Georgina

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

From: jbelle831

Good Evening everyone!!

Just wanted to let everyone know how things went wed, july 24. This

was 's (MK's) 2nd rheumy visit. Some good news and some

bad news. MK is 10 yrs old and was diagnosed in june with jra. The

dr is unsure of what type because she shows symptoms of 2 kinds -

mainly she thinks it's systemic.

Anyway, the good news.... for our 1st visit I had asked the dr what

was the long term of bringing MK back. the dr said she would

probably need to see mk every 6 wks for a while. well after this

visit - mk doesn't have to go back for 3 months - yeah!! the dr has

seen great improvement in her - but still has to keep the jra under

control.

the bad news.... it really isn't all that bad - but enough to be

concerned about. on our 1st visit several xrays were done. the dr

said they all came back fine - except her hands - but she had

expected that. she said her hands are becoming bony - i asked what

that meant - what she told me that it seems that what has already

happened to her hands is irreversable but hopefully have caught it in

time to not progress - xrays taken in a year to see. mk has muscle

wasting in her lower arms - from elbows to wrists. her gait is

better but still VERY limited rom in left ankle. so continue pt and

see about strengthening arms with help from therapist.

her mtx was increased from 10mg to 15mg. she was taking 3.8cc

ibuprofen 3xday. this has been very hard since mk is so active in the

summer - pool, camp, busy, busy, busy. so i asked the dr what could

we do to make it a 2x day dose - so she put her on 250mg naprosen and

stop the ibuprofen. we'll see how that goes.

i thank god that (knock on wood) mk has not had any side effects from

the meds. the strange thing is that although her hands, knees, and

ankles are swollen and inflammed, mk is not in any pain. even when

the dr exams her and pokes and prodes all her joints mk says nothing

hurts - this puzzles the dr i think. mk does have pain when they

mess with her left foot.

more good news.... mk gained 4 pounds in 6 weeks - yeah - she

needed to. she is only 66 pounds - so every little bit helps. she

is 4'5 " and VERY petite. the extra weight is a blessing.

Oh yeah, her grandmother (dad's mom) went with us also. I'm not sure

if it helped or not. But at least she got to meet the dr and see

where mk is going. the night before mk's appt her dad told me i

needed to cancel her appt. he said she was doing soooo well that she

didn't need to go back. i told him the dr needed to see how she has

progressed, she may want to change some things, and of course the dr

did.

sorry to go on, but wanted all to know mk is doing better.

thanks

ita & (10 systemic)

[Guest guest]

Dear Georgina,

I hope Josh is feeling better soon. You, he and your family are in my thoughts and prayers. I hate this disease. It makes me so sad when someone who's doing so well takes a step or two back, but I guess that is the nature of the beast. Big hugs,

xoxo, Ellie and Riley 4 poly

[Guest guest]

Hi Georgina,

I find myself always opening my mouth to soon.I have tried to make myself promice to keep s good times to myself because I always jinx him.Poor Josh,I hope he gets over this soon,and it doesnot spread to his lungs again.Reading your post I got sooo angary,like Arthur is a real person who needs a good a## kicking.It sounds like Josh is really growing up.He starting to take control over his own treatment,wearing his wrist splints at night and asking you to help with range of motion exercises.He just needs to tell you sooner instead of keeping it a secret.Im sure he just doesnt want to worry you,and like he said,he doesnt want to have to go up on the pred again.I hope the swelling on the outside ankle bone goes down,that is very painful.I know because that is the area thet gives the most pain,and the one area they did not inject.His swelled up in that area yesterday but is gone again today.I just about started crying when you described the rash and the ares,not a good sighn.I can handle a little on the thigh,but when it gets on the stomache and sides I worry like crazy.I hope it goes away as quickly as it came.

Love

Becki and 4systemic

Update on

Hi Everyone,

I guess I spoke too soon, when I wrote last week upon 's return from the Conference. Like Val, maybe it was during the plane trip or the visit there that he picked up a virus or something. He started off with sniffles and then a cough and then some congestion. Which, as usual, had him feeling pretty worn out and more fatigued than usual. He also had complaints of pain but in just a couple areas: wrists, fingers, and his right ankle again. He was having trouble pouring his own drinks. Had a couple spills in the kitchen that made me ask about his hands. Didn't really dawn on me till then, and that's when he told me that he had also been wearing his wrist braces again, when he went to bed. It's been a while since he did that! His right ankle has been bothering him a bit, feels and sounds all crunchy inside again. It's had some swelling and puffiness below the outside part of his ankle bone. He's had me helping him exercise it each evening. Rotating it in a circular motion till it's moving more easily or, more likely, till one or the other of us finally gets tired of doing it. He had the familiar rash two days in a row. Plain as day on his chest/trunk area one day and the day before that, on his sides by his ribs. He didn't even want to admit that he had the rash or that he'd been hurting in the mornings and evenings, while he was talking to the pediatrician (who he saw Monday). Kayla was there to butt in and tell it like it was, though. Thank goodness for younger sisters. At least the doctor won't think I've been hallucinating : ) Later on, Josh says: well, I didn't want my prednisone to go up again!

Doctor said he sounded pretty clear, despite his near constant nose-blowing. Said we might treat the possibility of a sinus infection, with antibiotics, but since Josh has already had his fair share of antibiotics in the past year I said well, I guess we should just wait and see if anything further develops. And hopefully it won't. As long as his chest and lungs sounded okay to the doctor, and we weren't compromising anything that might be going on related to the chest pain/pleurisy things that were going on in April/May .... I feel safe. I guess it's, at least for now, just a 'common cold'? But he's temporarily under the weather : (

School starts here on the 26th. We've registered, gotten PE uniforms, class schedules, etc. Josh really lucked out this year. Nearly all of his classes are in one building, so he doesn't have too far to walk around the campus. The schools here in Maui are so large and spread out! This should make things somewhat easier for him. Kayla's excited about joining him at the middle school, too.

Josh had his growth hormone injection this past weekend and once again, the flow stopped. So he had to get stuck twice. That hasn't really gotten any darned easier. I hope it does soon : )

Well, I guess I better hurry up and finish this before it becomes a novel. The kids are going to see the dentist for a cleaning, in less than an hour. I'll have to do all my message reading later this evening.

Aloha, Georgina

PS .... The News & Views Page will have new colors soon. That purple color scheme was suggested by Kayla. Sorry, Becki : ) And for those who missed being able to write in colors and pretty fonts .... I hope you've noticed that the JRA List is re-configured to use HTML : ) I didn't realize it would automatically shut that feature off when I switched us to no attachments mode. I wondered what happened with that! Sorry, guys.

[Guest guest]

Hi Diane,

He can't seem to make up his mind. He loves the idea of not having a shot for those 28 out of 30 days each month. The physical pain is for a very brief time (seconds, literally!) but causes him so much mental anxiety. He would prefer a less painful needle. Actually, he says it's NOT the needle going in that hurts him. Because we had again discussed using EMLA or another topical agent, to see if that might ease it some. He explained that the real pain begins just after the time I begin to push the plunger. It's not intramuscular. It's just under the skin ... but the solution is so thick (seems thicker than Elmer's glue) that it displaces surrounding tissue. That's been the issue, I guess. But it hasn't come to the point where he says No. Not anymore. Let's switch. And he knows he has that option. So I guess, at least for now, it's okay? He's willing to put up with it. I had hoped he'd have some gains to show for what he's been doing. Easily noticeable gains. He hasn't had any recent growth, though. I mean real recent. Overall, he's grown at a better rate this past year than in the last 6 but each time he goes by the wall chart he's hoping to be able to see a height increase again, despite our discussions and his understanding about it being a very slow process. Every time he sees a doctor they measure him again. It's become a bigger issue since we began growth hormone. I wish, in a way, that there would be no more measuring, no talk of his height, but that's completely unrealistic. I just don't want him to think he failed in any way, if it doesn't work quite so well as we hoped and he doesn't "measure up." I guess we just have to give it more time and see what happens. If he hadn't gotten sick in April/May and we hadn't raised his steroids, I have a sneaky feeling that the gains might have been happening faster. Though his SED rate was increased again, and he was feeling very poorly, so who's to know for sure what the best thing to do was? Trial and error, still. One day at a time.

Aloha,

Georgina

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

From: dbornscheu@...

Georgina-

So sorry to hear Josh is feeling under the weather. Hope it is just a bout with the cold which will blow by. The continuing agony of the growth hormone injections is not good news. He's a brave kid!!Diane (, 3, pauci)

[Guest guest]

Hi Ellie,

Thanks for your good thoughts. I think maybe Josh was a little more vulnerable to what was going around, maybe because of the excitement (stress?) of his big trip to the mainland. They woke up early, went to bed late, had a lot going on. He's already feeling much better. After all this time, I think I still overreact at times. Worry, when maybe I shouldn't. He had a good exam when he saw his rheumatologist on Friday. We're actually going to be decreasing his prednisone again, down to 12.5mgs, starting tomorrow. Cutting those 5mg tablets again : )

I've been reading along with interest about how Riley is adjusting to her leg brace and the amounts of pressure you're working with each night. That must take a lot of getting used to so I'm really happy that Riley is cooperative and able to deal with it alright. What a trooper! You've read other messages here, about how much improvement kids have gotten from their braces and splints, so I'm hoping that makes it a little easier for you, knowing that most likely there's a bright, sunny light at the end of this long tunnel.

Hang in there, Ellie : )

Aloha, Georgina

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

From: skyley8@...

Dear Georgina, I hope Josh is feeling better soon. You, he and your family are in my thoughts and prayers. I hate this disease. It makes me so sad when someone who's doing so well takes a step or two back, but I guess that is the nature of the beast. Big hugs, xoxo, Ellie and Riley 4 poly

[Guest guest]

Hi Becky,

I think everything is working out again. Josh's cold seems to be clearing up. He's not using half as many tissues each day : ) No more rash, either. Better that he has a cold now than once school starts, right? He goes back on the 26th, the morning after he flies back from JRA Camp. That'll be interesting. He's usually thoroughly exhausted the first day he gets back but I know he is not going to miss the first day of school. He and his friends have plans : ) He's so excited, too, since he found out he got placed into the advanced math class again.

's ankle, I'm beginning to think, maybe will always present some difficulty for him? It seems like his wrists and ankles were often the most sensitive spots. Personally, I have a problem with the sound of, say, cracking knuckles. It's not a real bone-on-bone sound but it gives me the creeps, for whatever reason. (so does the sound of styrofoam. Yuk!) 's ankle makes so much of that crackling noise when it's moving. You'd think that after a while it would go away but his doesn't ever seem to.

Well Becki, I'm so glad that little Dave seems to be doing okay even on such a low dose of steroids. At least I hope he's still doing good. Fingers are crossed, for you guys : )

Take Care, Georgina

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

From: Allan Larson

Hi Georgina,

I find myself always opening my mouth to soon.I have tried to make myself promice to keep s good times to myself because I always jinx him.Poor Josh,I hope he gets over this soon,and it doesnot spread to his lungs again.Reading your post I got sooo angary,like Arthur is a real person who needs a good a## kicking.It sounds like Josh is really growing up.He starting to take control over his own treatment,wearing his wrist splints at night and asking you to help with range of motion exercises.He just needs to tell you sooner instead of keeping it a secret.Im sure he just doesnt want to worry you,and like he said,he doesnt want to have to go up on the pred again.I hope the swelling on the outside ankle bone goes down,that is very painful.I know because that is the area thet gives the most pain,and the one area they did not inject.His swelled up in that area yesterday but is gone again today.I just about started crying when you described the rash and the ares,not a good sighn.I can handle a little on the thigh,but when it gets on the stomache and sides I worry like crazy.I hope it goes away as quickly as it came.

Love

Becki and 4systemic

[Guest guest]

Thank you Georgina, You always help me to feel more optomistic. She didn't wear her brace last night because she threw up on it. To much birthday cake I suppose. We washed it and it was all wet and instead of blowdrying it at 9:00 p.m. I decided one night without would be okay since she is doing so well.

How is Josh doing now? Feeling better I hope. Best of luck on that pred taper. I will be thinking of you and keeping my fingers and toes crossed.

xoxo, Ellie and Riley 4 poly

[Guest guest]

Update on

Hi, s pred got droped to 3mg every other day on Monday.I guess you can say it averages out to 1.5mg a day.He woke up Tuesday very stiff and in alot more pain then I have seen in months.He went to the rheumy yesterday,he has no active arthritis or swelling.Everything looked great.He does have some contractures in his wrists from the bad old days.They have been there for a long time but they never told me how to fix them until yesterday.No med in the world will get rid of them he has to do exercises every day.The morning stiffness was a real concern so they are raising the Enbrel from .45ml to .5ml still only 1 vial a week.Yesterday was a no pred day so I was really concerned about how he would feel this morning.I let him sleep in and he woke up feeling just fine.Looks like another classic case of steroid withdrawl.His little body just didn't know how to handle going 48 hrs between pred doses.We stay at the 3mg every other day for a month then go to 2mg every other day.I don't know about you but that sounds like alot to drop all at once.We just went from 3mg and 1/2mg to the 3 and 0,but we had been tapering every 2 weeks.This Christmas sure is differant then last year. was flareing and on 24mg pred a day. I hope all that is feeling good stays that way and all that are flareing get over it quick and start feeling better soon! I hope everyone has a merry Christmas. Hugs Becki and 4systemic

[Guest guest]

Hi Becki,

I always follow along closely, with much interest, when you write out these kinds of details about 's schedule for prednisone tapering. Thanks for taking the time to do so.

Since prednisone is available in little 2.5mg tablets, maybe you should ask about using them for one month. Rather than making a full milligram drop at the next scheduled decrease. You know how they say to keep in mind the percentage of the decrease, instead of just the value of the decrease? 1 mg seems like such a tiny amount but it's 33.3% of his current total dose ... versus half a mg being not quite 17%. Maybe I'm just overly cautious but after coming this far I wouldn't want to take any unnecessary chances. Then again, maybe other things will help compensate? I think it's so wonderful that has gotten to the point of every other day steroids. That used to be a goal of mine ~ after learning that while it often provides good enough symptom relief, it also minimizes unwanted side effects. I often wished that Josh could have started out on an alternate day dosing schedule but by the time I knew enough about it (thanks to dr.doc in S. Africa, for sending me related journal abstracts) it was, unfortunately, already too late for that. Then again, 's systemic symptoms were severe and difficult to control so his safety and well being was the immediate priority ... not what might happen sometime down the line.

I'm really joyful for you guys, that the holidays this year can be more upbeat and less worrisome. has come such a long way in these past 12 months. I hope the New Year is a happy and healthy one : )

Take Care,

Georgina

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

From: Arthurnator@...

Hi, s pred got droped to 3mg every other day on Monday.I guess you can say it averages out to 1.5mg a day.He woke up Tuesday very stiff and in alot more pain then I have seen in months.He went to the rheumy yesterday,he has no active arthritis or swelling.Everything looked great.He does have some contractures in his wrists from the bad old days.They have been there for a long time but they never told me how to fix them until yesterday.No med in the world will get rid of them he has to do exercises every day.The morning stiffness was a real concern so they are raising the Enbrel from .45ml to .5ml still only 1 vial a week.Yesterday was a no pred day so I was really concerned about how he would feel this morning.I let him sleep in and he woke up feeling just fine.Looks like another classic case of steroid withdrawl.His little body just didn't know how to handle going 48 hrs between pred doses.We stay at the 3mg every other day for a month then go to 2mg every other day.I don't know about you but that sounds like alot to drop all at once.We just went from 3mg and 1/2mg to the 3 and 0,but we had been tapering every 2 weeks.This Christmas sure is differant then last year. was flareing and on 24mg pred a day. I hope all that is feeling good stays that way and all that are flareing get over it quick and start feeling better soon! I hope everyone has a merry Christmas. Hugs Becki and 4systemic

[Guest guest]

HI everyone, had his first dose of methotrexate friday night ( 15mg) He never got dressed saturday morning. stayed on the couch or played video games in bed all day. said he felt kind of nauseous and tired. was like that until he went to bed. this morning he got up felt a little better. had some cereal and went to a friends house, he still can't walk too far so I drive him, everywhere. We have to have xrays this week to see if he has a fracture in his hip. He wouldn't take the sulfasalasize pill. it is really big. I called the pharamict to see if they made them smaller but they don't. I figure we will work on that this week.. I just wanted him to get out today and enjoy being a kid. any feedback on the sufursalasize? ( don't think I am spelling it right ) I really don't know much about this drug.. thanks Jane

[Guest guest]

Glad to hear that Josh is doing okay. It sounds that he and n are very similar now. n just started high school. We have to watch how much she does, and make sure she gets her rest. The arthritis pops up occasionally, but she won't share much anymore when she hurts more than normal. She says that I then worry too much. Take care, (n, 14, systemic)

Update on

Hi,Figured it was about time for me to send in a brief update. It's been a while since I did that. Sometimes there just doesn't seem to be any let up. Or things are relatively stable but just for a short time and then it's something else. It used to be that way for Josh. Just one thing after another. Finally, things really seemed to settle down. Not 100% ... but about 85%. Which I'm so very grateful for, of course. It's such a major and meaningful difference for us.Josh missed his first day of school this year, this past Tuesday. It rained most of the night before and all morning. I guess I tend to agree that sometimes a change in barometric pressure or the amount of dampness can make a difference in the way a person with arthritis is feeling. He was really out of it. Stiff, sore, and very, very tired but fortunately he was feeling better by the evening time.For the past month or so he's been having a little morning stiffness on a lot of days but not lasting for hours on end like it used to be. Just about an hour or so before he's feeling okay. (Except for his wrists. That's about the only real spot where he's been hurting a whole lot.) When he had his MTX shot on Friday afternoon, yesterday, I asked the nurse what his last SED rate was. I don't even get copies anymore since nowadays they're mostly normal. (I used to get a copy every single month and go over it with a fine tooth comb!) Well, it was a 25. Just a little tiny bit off, like I sort of figured it was. Nothing major and definitely nothing at all like it used to be when things were really bad for him (when his SED rate was often closer to 100!) For us, things have become relatively stable and the bad parts aren't nearly as bad as before. and I have to fly to Honolulu for the day on the 1st to see his rheumatologist, an occupational therapist, and an orthopedic doctor. Maybe get some new wrist splints made since he's outgrown the old ones. I had hoped he'd also outgrown the need for them but something is obviously wrong again and maybe that would help.Josh had been going to practice and conditioning after school two or three times a week, in hopes that he'd be better prepared to maybe try out for basketball at school in November, despite his (lack of) height. He didn't go this past week. Just too tiring to keep up with, for him. A lot of exercise. A whole lot of running. He was thinking that maybe he was overdoing it and might feel better physically if he didn't work out so much. So time will tell.I guess that's about it for now. Just wanted to update on how things were going for us. Pretty well There were a whole bunch of abstracts and reports this past week. Hope no-one was overwhelmed with the number of medical postings. Read and save whatever you feel is relevant. Go ahead and delete those that aren't. Don't forget, too, that our group has a searchable archives available at: /messagesThat can come in handy sometimes when you're looking for something specific.Take care,GeorginaTo leave this mailing list, send request to: -unsubscribe

[Guest guest]

Georgina:

We'll be thinking of Josh on Wednesday and hoping his appt goes well.

Maybe they can 'tweak' his drug regimen to give him some relief and

allow him to do what he wants to do.

Rob's range of motion continues to improve on the MTX. He still has

pain, though, when he tries to do what he wants to do, physically. If

he attempts to run, for instance, the next morning he has fluid on

his knees. He has decided that when he returns to the rheumy - On

October 7 - he is going to tell him that he wants him to get more

aggressive and that he is tired of hurting. I am frankly glad that he

is wanting to take a more active role in his health care...because I

know that he will have to one day, and what better time to start than

now. He needs to let the docs know what he is thinking and what his

goals are...so this is a good time to start.

He continues to have gross hematuria and the nephro who was working

him up all summer left on 'sabbatical' - so the pediatrician decided

that it was time for another opinion, in the same city (2 hours away)

as his rheumy. This nephrologist sees kids in conjunction with the

rheumatologist...because apparently there are a few kids who have

rheumatological processes that have kidney involvement. Although< i

have never gotten a reply to my request for another parent to contact

me if their child is having similar episodes as Rob. I am thankful

there is noone else on the list, mind you, but I was hoping to be

able to compare notes with a parent who had a child in a similar

situation. Anyway... is an incredibly strong kid, and sounds

also to be very mature for his age. Does he continue to do well with

the nightly GH shots? Rob is doing well. He has grown 2-1/2 inches

since starting the shots 4/25 and has gained 13 lbs! He is pleased

about that.

Thanks for the update and looking forward to hearing what the rheumy

had to say on Wednesday.

and Rob 14 Juvenile Ankylosing Spondylitis

> Hi,

>

> Figured it was about time for me to send in a brief update. It's

been a

> while since I did that. Sometimes there just doesn't seem to be any

let

> up. Or things are relatively stable but just for a short time and

then

> it's something else. It used to be that way for Josh. Just one

thing

> after another. Finally, things really seemed to settle down. Not

100%

> ... but about 85%. Which I'm so very grateful for, of course. It's

such

> a major and meaningful difference for us.

>

> Josh missed his first day of school this year, this past Tuesday.

It

> rained most of the night before and all morning. I guess I tend to

agree

> that sometimes a change in barometric pressure or the amount of

dampness

> can make a difference in the way a person with arthritis is

feeling. He

> was really out of it. Stiff, sore, and very, very tired but

fortunately

> he was feeling better by the evening time.

>

> For the past month or so he's been having a little morning

stiffness on

> a lot of days but not lasting for hours on end like it used to be.

Just

> about an hour or so before he's feeling okay. (Except for his

wrists.

> That's about the only real spot where he's been hurting a whole

lot.)

> When he had his MTX shot on Friday afternoon, yesterday, I asked

the

> nurse what his last SED rate was. I don't even get copies anymore

since

> nowadays they're mostly normal. (I used to get a copy every single

month

> and go over it with a fine tooth comb!) Well, it was a 25. Just a

little

> tiny bit off, like I sort of figured it was. Nothing major and

> definitely nothing at all like it used to be when things were

really bad

> for him (when his SED rate was often closer to 100!) For us, things

have

> become relatively stable and the bad parts aren't nearly as bad as

before.

>

> and I have to fly to Honolulu for the day on the 1st to see

his

> rheumatologist, an occupational therapist, and an orthopedic

doctor.

> Maybe get some new wrist splints made since he's outgrown the old

ones.

> I had hoped he'd also outgrown the need for them but something is

> obviously wrong again and maybe that would help.

>

> Josh had been going to practice and conditioning after school two

or

> three times a week, in hopes that he'd be better prepared to maybe

try

> out for basketball at school in November, despite his (lack of)

height.

> He didn't go this past week. Just too tiring to keep up with, for

him. A

> lot of exercise. A whole lot of running. He was thinking that maybe

he

> was overdoing it and might feel better physically if he didn't work

out

> so much. So time will tell.

>

> I guess that's about it for now. Just wanted to update on how

things

> were going for us. Pretty well There were a whole bunch of

abstracts

> and reports this past week. Hope no-one was overwhelmed with the

number

> of medical postings. Read and save whatever you feel is relevant.

Go

> ahead and delete those that aren't. Don't forget, too, that our

group

> has a searchable archives available at:

>

> /messages

>

> That can come in handy sometimes when you're looking for something

specific.

>

> Take care,

> Georgina

[Guest guest]

Georgina although I don't post much I do read everyone's posts and updates,

and pray over each one. I also skim the first part of each article you post

and while they don't all interest me, many of them do and I save them. I've

also printed some to send to school for Casey's teachers to read. She's

blessed in that one of her 2 teachers (she's in 7th grade in an experimental

montessori setting) has RA. Anyway...as I read this update post I could

relate with the wrist splints and the missed school as I suppose most of us

can - and it's just good to know that we're far from alone in this

battle...I always appreciate your posts and every single one that posts

here.

Sherry

http://www.ittybittybirdiebites.com

***September Special is UP!*** (click on Special)

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

From: " Georgina " <gmckin@...>

> Figured it was about time for me to send in a brief update. It's been a

> while since I did that. Sometimes there just doesn't seem to be any let

> up. Or things are relatively stable but just for a short time and then

> it's something else. It used to be that way for Josh. Just one thing

> after another. Finally, things really seemed to settle down. Not 100%

> ... but about 85%. Which I'm so very grateful for, of course. It's such

> a major and meaningful difference for us.

>

> Josh missed his first day of school this year, this past Tuesday. It

> rained most of the night before and all morning. I guess I tend to agree

> that sometimes a change in barometric pressure or the amount of dampness

> can make a difference in the way a person with arthritis is feeling. He

> was really out of it. Stiff, sore, and very, very tired but fortunately

> he was feeling better by the evening time.

>

> For the past month or so he's been having a little morning stiffness on

> a lot of days but not lasting for hours on end like it used to be. Just

> about an hour or so before he's feeling okay. (Except for his wrists.

> That's about the only real spot where he's been hurting a whole lot.)

> When he had his MTX shot on Friday afternoon, yesterday, I asked the

> nurse what his last SED rate was. I don't even get copies anymore since

> nowadays they're mostly normal. (I used to get a copy every single month

> and go over it with a fine tooth comb!) Well, it was a 25. Just a little

> tiny bit off, like I sort of figured it was. Nothing major and

> definitely nothing at all like it used to be when things were really bad

> for him (when his SED rate was often closer to 100!) For us, things have

> become relatively stable and the bad parts aren't nearly as bad as before.

>

> and I have to fly to Honolulu for the day on the 1st to see his

> rheumatologist, an occupational therapist, and an orthopedic doctor.

> Maybe get some new wrist splints made since he's outgrown the old ones.

> I had hoped he'd also outgrown the need for them but something is

> obviously wrong again and maybe that would help.

>

> Josh had been going to practice and conditioning after school two or

> three times a week, in hopes that he'd be better prepared to maybe try

> out for basketball at school in November, despite his (lack of) height.

> He didn't go this past week. Just too tiring to keep up with, for him. A

> lot of exercise. A whole lot of running. He was thinking that maybe he

> was overdoing it and might feel better physically if he didn't work out

> so much. So time will tell.

>

> I guess that's about it for now. Just wanted to update on how things

> were going for us. Pretty well There were a whole bunch of abstracts

> and reports this past week. Hope no-one was overwhelmed with the number

> of medical postings. Read and save whatever you feel is relevant. Go

> ahead and delete those that aren't. Don't forget, too, that our group

> has a searchable archives available at:

[Guest guest]

Hope that Josh's appt's go well. Perhaps he will be able to get back to

conditioning for basketball - maybe if he went just once a week or so?

Here's hoping he is feeling less tired soon - that is so frustrating for

the kids. I know it is for Chris. Starting back to school can really

take a lot out of a kid. And conditioning for sports wears out all the

kids, so I can imagine that Josh is even more tired, with his health

issues.

Was nice that you were able to write that Josh had " outgrown " his

splints! Is his growth is doing well? Hopefully he will soon outgrow his

need for the splints as well.

Good luck to our newest high school student! Michele ( 16, pauci

& spondy)

Update on

Hi,

Figured it was about time for me to send in a brief update. It's been a

while since I did that. Sometimes there just doesn't seem to be any let

up. Or things are relatively stable but just for a short time and then

it's something else. It used to be that way for Josh. Just one thing

after another. Finally, things really seemed to settle down. Not 100%

.... but about 85%. Which I'm so very grateful for, of course. It's such

a major and meaningful difference for us.

Josh missed his first day of school this year, this past Tuesday. It

rained most of the night before and all morning. I guess I tend to agree

that sometimes a change in barometric pressure or the amount of dampness

can make a difference in the way a person with arthritis is feeling. He

was really out of it. Stiff, sore, and very, very tired but fortunately

he was feeling better by the evening time.

For the past month or so he's been having a little morning stiffness on

a lot of days but not lasting for hours on end like it used to be. Just

about an hour or so before he's feeling okay. (Except for his wrists.

That's about the only real spot where he's been hurting a whole lot.)

When he had his MTX shot on Friday afternoon, yesterday, I asked the

nurse what his last SED rate was. I don't even get copies anymore since

nowadays they're mostly normal. (I used to get a copy every single month

and go over it with a fine tooth comb!) Well, it was a 25. Just a little

tiny bit off, like I sort of figured it was. Nothing major and

definitely nothing at all like it used to be when things were really bad

for him (when his SED rate was often closer to 100!) For us, things have

become relatively stable and the bad parts aren't nearly as bad as

before.

and I have to fly to Honolulu for the day on the 1st to see his

rheumatologist, an occupational therapist, and an orthopedic doctor.

Maybe get some new wrist splints made since he's outgrown the old ones.

I had hoped he'd also outgrown the need for them but something is

obviously wrong again and maybe that would help.

Josh had been going to practice and conditioning after school two or

three times a week, in hopes that he'd be better prepared to maybe try

out for basketball at school in November, despite his (lack of) height.

He didn't go this past week. Just too tiring to keep up with, for him. A

lot of exercise. A whole lot of running. He was thinking that maybe he

was overdoing it and might feel better physically if he didn't work out

so much. So time will tell.

I guess that's about it for now. Just wanted to update on how things

were going for us. Pretty well There were a whole bunch of abstracts

and reports this past week. Hope no-one was overwhelmed with the number

of medical postings. Read and save whatever you feel is relevant. Go

ahead and delete those that aren't. Don't forget, too, that our group

has a searchable archives available at:

/messages

That can come in handy sometimes when you're looking for something

specific.

Take care,

Georgina

To leave this mailing list, send request to:

-unsubscribe

[Guest guest]

Hi Sherry,

I'm glad that you've found some of the medical articles helpful and

informative. You've heard that old saying, I'm sure, that a little bit

of knowledge can be a dangerous thing. I think one of the best things we

parents can do for our children, in terms of their JRA, is to educate

ourselves well about this disease. If we have at least a basic

understanding of current medical thought and the various treatment

approaches, and keep ourselves updated on the latest research findings,

we can be better advocates for our children. When we're more aware we're

somewhat more able to make better, more informed, decisions about our

children's health care and safety. The more we understand something,

oftentimes, the less we are frightened of it. JRA can be a pretty scary

disease so I, for one, want to keep tabs on it ~ know better what to

expect, to see what we're up against, and learn more about what defenses

we have against it. Studying the journal articles is one way of doing

that. Of course, the personal experience of living day to day with a

child who has the illness is probably the very best teacher ... but it

helps to fill in some of the gaps.

Take Care,

Georgina

ChiaOwl wrote:

> Georgina although I don't post much I do read everyone's posts and updates,

> and pray over each one. I also skim the first part of each article you post

> and while they don't all interest me, many of them do and I save them. I've

> also printed some to send to school for Casey's teachers to read. She's

> blessed in that one of her 2 teachers (she's in 7th grade in an experimental

> montessori setting) has RA. Anyway...as I read this update post I could

> relate with the wrist splints and the missed school as I suppose most of us

> can - and it's just good to know that we're far from alone in this

> battle...I always appreciate your posts and every single one that posts

> here.

>

> Sherry

[Guest guest]

Hello everyopne just got back from the pedi rheimy. I brought s xrays (RYan is 12 has had systemic jra since age 6) he thinks has eith avascular necrosis of the right hip or degenerative arthritis. needs the radiologist to look at exray. he said we need to treat s arthritis more aggressivley. we are now giving him methotrxate by mouth ( tonight will be his 4th week on it. he wants to switch to enbrel injections and eith enbrel, humira or remicade infusions once a month. he said if we don't do this and treat more aggresivley he will end up with a hip repacement down thw road. anyone with a child on any of these drugs that can give me feedback ? i have a video to watch on humirA AND LOADS OF BOOKLETS ON ENBREL AND REMICADE. DON'T KNOW WHICH WAY TO TURN.. ANY INFO APPRECIATED,, JANE

[Guest guest]

hI i GUESS THE RHEUMY WANTS TO PUT HIM ON HUMIRA OR ENBREL BECAUSE RYANS HIP IS GETTING REALLY BAD AND XRAYS SHOW ALOT OF DEGENERATION. I GUESS THE RHEUMY FEELS THE DAMAGE IS HIS HIP WARRANTS STRONGER MEDS ? tHANKS jANE ANY OTHER FEEDBACK APPRECIATED

[Guest guest]

Jane, Why do they want to put on one of the biologicals so fast? If he has been on mtx for just four weeks, is that quick enough to see an improvement? Anyway, my brother is on humira. The only thing he has to say about it is that the shot really, really hurts. He doesn't know why, but it burns and is tough for a 55 year old to bare it. He had been on enbrel and that one didn't hurt. He hasn't had any side effects from either one. He switched because he wasn't having much improvement with the enbrel. The humira is a bit better. (n, 14, systemic)

Re: update on

Hello everyopne just got back from the pedi rheimy. I brought s xrays (RYan is 12 has had systemic jra since age 6) he thinks has eith avascular necrosis of the right hip or degenerative arthritis. needs the radiologist to look at exray. he said we need to treat s arthritis more aggressivley. we are now giving him methotrxate by mouth ( tonight will be his 4th week on it. he wants to switch to enbrel injections and eith enbrel, humira or remicade infusions once a month. he said if we don't do this and treat more aggresivley he will end up with a hip repacement down thw road. anyone with a child on any of these drugs that can give me feedback ? i have a video to watch on humirA AND LOADS OF BOOKLETS ON ENBREL AND REMICADE. DON'T KNOW WHICH WAY TO TURN.. ANY INFO APPRECIATED,, JANE To leave this mailing list, send request to: -unsubscribe

[Guest guest]

Hi Jane,

My daughter Abbie has been on Remicade since March 2002. She had a great reaction from the start. As time goes on though, it seems to help less and less. She also experiences numerous upper respiratory infections. Her current meds are: 1.2 ml Mtx subq, 400 mg plaquenil, 400 mg celebrex, 1 mg folic acid (except on day of and day after mtx injection. . .she then takes 5 mg folinic acid). Due to the many upper respiratory infections, she also now takes Allegra D. It was not a tough decision for us to make about the Remicaide because she was steroid dependent (20 to 40 mg per day). She was off steroids within 3 months of starting Remicaide.

Good luck with your sons treatment.

Christy (Abbie, 14 systemic)

[Guest guest]

Hi,

My son takes Enbrel.He has been on it for a little over a year now.He got wonderful results within 9 days and things only got better.He was taking 25mg MTX sub-que,folic acid,200mg Plaquenil,800mg Ibuprofin and 10-25mg Steroids a day.He breezed right off the steroids after being on them for 20 months.He now just takes 12.5mg Enbrel and 12.5mg MTX by mouth and the folic acid.

Good luck with your decision.

Becki and 5systemic

[Guest guest]

Dear Becky thankyou for your reply about your son . this information helps so much..How much pain was he in before enbrel? where was his arthritis ? s hip is bad and he walks with quite a limp and pain, He is in so much pain now he is begging for the shots. We weten't sure if we should use enbrel or humira. is the enbrel twice a week ? do you give the shots? any info much appreciated !! thanks soooooooo much !! Jane ( systemic jra age 12 )

[Guest guest]

Jane,

My daughter also takes enbrel, 20mg twice a week. It has made an amazing difference for her. Humira is very similar to enbrel. The one big difference, though, is that enbrel is approved for use in kids. Humira is just now being studied in kids, if I'm not mistaken.

Liz (-11- poly)

Re: update on

Dear Becky thankyou for your reply about your son . this information helps so much..How much pain was he in before enbrel? where was his arthritis ? s hip is bad and he walks with quite a limp and pain, He is in so much pain now he is begging for the shots. We weten't sure if we should use enbrel or humira. is the enbrel twice a week ? do you give the shots? any info much appreciated !! thanks soooooooo much !! Jane ( systemic jra age 12 ) To leave this mailing list, send request to: -unsubscribe