hello

[Guest guest]

hey I'm not from kansas but I am on tx and this is a

great site to talk about this thing.The sides haven't

been that bad.The doc's gotta tell you the worse case

scenario.You know.Not to worry(thats hard huh)you can

always stop if its to bad.This is the only shot(no pun

intended) we got though for now.You'll do fine.Good

Luck.

--- hutchinsonhepper <hutchinsonhepper@...>

wrote:

> I was diagnosed in 9/2002 with a enzyme count of 13

> Million.......I

> am getting ready to start my treatment with

> peg-itron and rebetol. Am

> scared a little bit.......ya know the uncertainty on

> how I will react

> to the treatment/medication......I wanted to be the

> first to post

> this month...looks like I made it on y debut....I am

> from Hutchinson,

> Kansas if there are any people close to me please

> e-mail me and let's

> shoot dachit!looking forward to gaining alot of

> support from you all

> here in the group......

>

> Have a Nive day

> Happy May

> Huchinsonhepper

>

>

[Guest guest]

Hi welcome too the group. Sorry that pain has brought you

here but I think you'll find lots of caring people here too talk

too. Most that are going thru the same things you are. My injuries

too are from nothing specific, dr's hate that don't they? they

always ask and when I can't tell them such and such a day it drives

them nuts. But we are all human, doing things everyday sometimes for

those of us who has hidden problems, may or may not, today or

tomorrow or maybe 10 yrs from now, show up and make us hurt like

holy heck. I think thats more common than dr's would make us

believe. Parts of our bodies wear out what are we supposed too do??

Get your dr too do MRI's every year just in case?? HA!!!!!!!!!! The

insurance companies would love that one So hang in there and

again welcome too the group. Sharon

In neck pain , " tangertess "

<tangertess@y...> wrote:

> My name is and I have been dealing w/a work injury for

about

> four yrs. now. It was nothing I did on a specific day, it just

came

> on gradualy and just keeps getting worse.

> Earlier this yr. they found that my shoulder was really messed up

> and I had surgery in July on that. But all of the sudden WC says

> that because I have no " day of injury " that it couldn't be work

> related. So now along with feeling rotton everyday I have to deal

> with this.

> They still have no idea what is wrong with my back. I have pain

> under and between my shoulder blades, mostly on the left side.(Im

> left handed)Its a constant pain that is there all of the time

> sometimes worse than others. My arm fingers and left side of my

face

> also tingle at times.

> I've just returned to work 4 hours a day and its miserable. I have

> work restictions from my Dr. and can't really do much of anything

> but having to sit for any length of time gets to me.

> I've looked into other forums and chat rooms but they don't really

> stay on the subject, or people come in and make a mess out of the

> whole thing.Thanks for listening.

[Guest guest]

It was actually my GI doctor who referred me to see the rheumatologist. I have IBS. There has been a study that connects RA with irritable bowel and inflamatory bowel.

(poly JRA and spondy 18)

[Guest guest]

hi Teena

i have not been posting in a while due to being busy but read them everyday

the stomach is one of s problems also she is taking zantac she has also begun to be more finiky on what she eats again

she is on the home bound school also which she has been on since 9th grade and this year shes in the 11th grade so the doctor said she will graduate in the homebound program due to she cant keep up with the students as far as walking distance and her sleep patterns and the tardies this is good though because its a 1 on 1 teaching and shes doing great with her grades not like when she was in middle school and her grades dropped alittle due to tardies and being absent alot

so keep up the homebound program if needed

goes to a neurologist and neurosurgeon also genetics rhuematologist ortho

eye doctor dentist dermatologist primary care and asthma specialist foot doctor

and bone specialist stomach dr endrocrine dr thinking have i missed any lolol

this disease has learned me one thing and thats to take each day one day at a time

and when it comes to making plans wair to last minute or say we will see

lolol she had prblems back when she was younger pains in muscles and joints and stomach the dr would say it was just growing pains due to her constitutional growth delay that went on until she was 12 when she woke and couldnt walk

she had signs of jra before this but was passed as growing pains

lolol the dr learned as well as we did from 12 til now shes 16 her body has been through alot along with alot of meds and finding out shes allergic to alot

today shes doing better but still has those days her sleeping is so off its not funny

she gets fatigued alot but she copes with what shes learned about this disease

and does good shes like any mormal teen just somewhat slow when it comes to walking a long way she wears out

we will survive and go with what god has gave us just differently

if you have any questions email me anytime

these kids do survive this disease sometimes its hard

Robbin

[Guest guest]

Hello Raven,

I am sorry to hear that you have all of those back problems at such a young age. I am a 53year old man with chronic pain in my neck,and in my back.

I had an MRI done this evening . It will be good for me to finally find out what is wrong with me. [so much for me,now back to you ]

I will be praying that GOD will give you a quick recovery from the surgery that you are going to have to go through. I hope the surgery will give you relief that you deserve to have,and that you will become pain free.

TAKE CARE OF YOURSELF AS BEST AS YOU CAN.

SINCERELY ,LARRY

I'm about to undergo surgery for my spine. I have 7 broken vertabrae. 2 herniated discs. Lordosis also. I'm 18. With a HUGE fear of sharp objects..so this ought to be fun. I injured myself playing soccer, getting in a few car wrecks, and then falling down some lovely stairs. Lucky one aren't i? Heh.I just would love someone to talk to about it. Thanks...I feel like i just made a really bad speech.

[Guest guest]

Hi Sue,

I am trying to get caught up reading all the posts - I got sick over the

holidays and did very little reading or posting, but I wanted to tell you about

my son's experience with IV steriods. My son was diagnosed with systemic onset

JRA in July of 2001. He is now 6 and in first grade. It was his second

admission to the hospital with his symptoms, before he was diagnosed. He was

already on Prednisolone for a kidney disorder which flared when he first became

ill with the JRA symptoms - with so much going on it was really hard to tell

what was happening. As he tapered from the steriods his JRA symptoms came back

with a vengence, leading to the second admission. At this time they raised his

steriod dose to 27mg daily. After a week or so, when he wasn't responding as

well as they wanted, they added Cyclosporine (which is also used to treat his

kidney disorder when steriods don't produce the desired results) - anyway, he

improved some, but still wasn't reponding as well as they would like. Then they

brought him in for weekly Solumedrol infusions. That was planned for five

weeks, but they stopped after two because the improvement was so dramatic, the

fevers stopped, he was playing relatively pain free. A big change from when he

couldn't walk at all, or with great difficulty. So, I was very pleased with the

results, though he did have all the physical signs of the steriod treatment

(Cushings syndrome, weight gain) The combination of the Cyclosporine and

Prednisolone resulted in severe headaches and hypertension. When they started

the Lisinopril for his hypertension, the headaches ceased. He did well for a

long time, and we tapered the steriods slowly, and in November of 2002 he flared

and ended up back in the hospital with liver and spleen involvement, (much like

his first admission which also included other organ involvement), they upped the

steriods some, and he improved a little, butwas still clearly in a flare, fever,

pain, inability to move on his own, and the migratory rash and was admitted

again in December 2002. It was during this admission that they started him on

IV Solumedrol - which he received daily for 5 or 6 days. (I'll have to check

his chart). They also raised his po Prednisolone to 33 mg daily when he was

discharged. He still had symptoms, (High fever and difficulty moving the week

of Christmas - though he had good days/hours dispersed throughout with the help

of Motrin, etc on top of his regular meds.) ly, the po and IV Steriods

kept him alive - so the love hate relationship goes on. I hate what the

steriods do to him, the weight fluctuations, the hypertension and growth issues

- but I honestly believe, with all the organ involvement, the cardiac issues he

was dealing with that he wouldn't be here were it not for the Prednisolone and

Solumedrol. He is doing really well now, we have done a very slow taper once

again and he is down to 3mg daily - which we didn't touch through the holiday

season because neither I or his doc's wanted a repeat of last year over the

holidays. This year, on the anniversary date of his admission last december, my

little guy was running up and down a basketball court, playing basketball with

his " little-league " basketball team - having the time of his life. I started

crying when I realized what day it was. He gave me a little scare Christmas

night - fever and joint pain in his hands, and fever again the day after

Christmas - but the mini-flare passed and he is doing very well.

I hope that Kenz does well, and that I have been of some help.

In a message dated 12/30/2003 12:43:32 AM Eastern Standard Time,

mudslid4952002@... writes:

>

>

> Hello everyone - I am new to the group in the sense that I have

> never posted anything here, I have, however been reading posts for

> quite some time now. I find so much helpful information here. I am

> glad I found this group, it was so helpful when I found out what was

> wrong with my daughter. My name is Sue and my daughter's name is

> Mackenzie, she just turned 6 in November. She was diagnosed with

> systemic JRA in November of 2000 right around her 3rd birthday. She

> has a brother who will be 16 in May and a sister who is 13. We live

> in Illinois. This past year has been a difficult one for us.

> Mackenzie's dad, Dave, was called to serve our country in February.

> That has been especially hard on Kenz (what I call her alot and is

> alot shorter to type!), since she was/is Daddy's girl. She was real

> used to dad being around for her. He worked second shift and was

> home with her in the mornings till she went to 1/2 day preschool

> last year. This year she is in Kindergarten. The question I have

> to ask is about Solumedrol. I would just like to know what you all

> know about it. I haven't seen much mentioned on it. Mackenzie is

> on 500mg once a week through an IV, they also administer her

> methotrexate (22.5mg)through the IV too. She is also on Plaquenil,

> Cyclosporin, Indomethachin, Leucovor and Multi-vitamins. I guess I

> would have to say she had a pretty bad flare toward end of October.

> This will be the third time she is on this dose of the Solumedrol IV

> and I was just wondering what experiences anyone else may have with

> it. Like how long should someone be on that high of a dose?

> Anything anyone knows about it would be great. I just want to say

> once again how nice it is knowing there are people out there with so

> much valuable information that they are willing to share

> with

> others. Thank you all. Sue and Mackenzie

>

>

>

>

>

[Guest guest]

Hello Pat! My name is Donna and I, too, am in Louisville. I am a JRA vet and in 1998 established the support group FACES. We have access to arthritis info and have monthly meetings as well as have events for children, their families and sometimes the adults get to together. Recently we have been to the the Old Spaghetti Factory and Gattiland. , tree and Lynda all from this list are a part of FACES and we would love to meet you. if there is anything I can do please let me know and feel free to email me at faces1999@... welcome to this board, it is truly a fabulous group!!!!

Donna Fox, PresidentFACESFacing Arthritis with Compassion, Encouragement and Support(for children and young adults)981 S. Third St., Ste 102Louisville, Ky 40203502-367-6878www.calky.org/facesfaces1999@...

[Guest guest]

Hello Pat, no I'm not ignoring you I've been busy and you live in

Louisville? Well my phone number if you'd like is 290-3757 and our

support group here is FACES group leader is Donna Fox. faces1999@...

And we would LOVE to have you and your son as participatents in our

group. Please feel free to contact either my self or Donna at her e-mail

address..

HPLTA

Rusty

[Guest guest]

Tammie,

One doesn't usually get the crankiness (riba rage as I call it) until further

into treatment. It is caused by the decrease of neurotransmitters in your brain

(the ribavarinn destroys the neurotransmitters). An increase in your

antidepressant can nip it in the bud...you are on antidepressents, aren't you?

If you aren't you need to get started on them. When I got the crankies on

treatment (and they were very minor compared to when I did rebetron), we

increased my antidepressant and within a month the crankies were gone.

Tatezi

hello

Oh, and I did have a touch of the riba rage that ya'll talk about. It, combined

with the pms, was terrible and my kids really saw the worst of me

[Guest guest]

Tammie,

One doesn't usually get the crankiness (riba rage as I call it) until further

into treatment. It is caused by the decrease of neurotransmitters in your brain

(the ribavarinn destroys the neurotransmitters). An increase in your

antidepressant can nip it in the bud...you are on antidepressents, aren't you?

If you aren't you need to get started on them. When I got the crankies on

treatment (and they were very minor compared to when I did rebetron), we

increased my antidepressant and within a month the crankies were gone.

Tatezi

hello

Oh, and I did have a touch of the riba rage that ya'll talk about. It, combined

with the pms, was terrible and my kids really saw the worst of me

[Guest guest]

Tammie, it's good to see you feel better. It must be tough going with kids

around so don't beat yourself up about giving a good tongue lashing to

them....as long as they know Mommy is going through a bad time right now, they

will be fine and so will you. Hang in there girl.

Carol

hello

Thanks for all of the encouragement. I am doing much better both

mentally and physically today.

I only took half of my shot this week and don't know if that has

anything to do with it or not, but feeling pretty good. One of the

white spots is now gone and there is only one left. I have not run

any fever and my throat no longer hurts (hurray).

I am STILL waiting to get my Neuprogen in. The pharmacy assured me

that it would be mailed on Friday and I would receive it yesterday,

but I got a call yesterday and they needed my address. They said that

they would get it in the mail and I should get it in a few days.

I will be calling my insurance contact person tomorrow and

complaining about this. I am trying to balance my appreciation of the

fact that I am receiving these medicines so cheap with my anger at

the mess-ups that has me 10 days late on getting this new med in.

Considering this is a refrigerated medicine, I don't expect to see it

until Tuesday at the earliest.

Anyway, I am feeling pretty excited about taking my meds again. I was

feeling really down (pms going on too) and was about to get off of

it. I will stick with it longer though.

Oh, and I did have a touch of the riba rage that ya'll talk about.

It, combined with the pms, was terrible and my kids really saw the

worst of me

I will finish this small novel with a thanks to everyone for their

support and all of the information that is put on this website. I

don't respond a lot because I don't know much about this yet, but I

want everyone to know that ya'll are appreciated.

<><TammieD><>

[Guest guest]

> Tammie,

>

> One doesn't usually get the crankiness (riba rage as I call it)

until further into treatment.

OH, how horrible. I am just that mean!!!! I have no excuse. I am

blushing right now.

you are on antidepressents, aren't you?

No, I am not taking anything like that. I will ask my doc about them.

<><TammieD><>

[Guest guest]

Do talk to your doctor about antidepressants...depression is a known side of

treatment and you should get on them asap. If one doesn't work within a month,

ask him to try a different one. I take amitriptyline at night which also

promotes stage 4 sleep.

Re: hello

you are on antidepressents, aren't you?

No, I am not taking anything like that. I will ask my doc about them.

<><TammieD><>

[Guest guest]

Do talk to your doctor about antidepressants...depression is a known side of

treatment and you should get on them asap. If one doesn't work within a month,

ask him to try a different one. I take amitriptyline at night which also

promotes stage 4 sleep.

Re: hello

you are on antidepressents, aren't you?

No, I am not taking anything like that. I will ask my doc about them.

<><TammieD><>

[Guest guest]

, I wouldn't call anything we experience while on tx 'normal'

but bleeding gums are common. You may also get sores inside or

outside of your mouth. I did.

Make sure you have no dental work done while on tx. Our oral

tissues take 3x as long to heal ...

You are doing great! Try using a diluted!!!salt rinse. Also, there

are several good toothpastes and rinses made for people on chemo. I

used 'Biotene' and even used their fake saliva (yes, you can get it

when you don't have it anymore, lol) during the entire treatment.

Mainly, try not to irritate your gums.

Hugs and prayers,

Suzy

> Hello all...I'm getting ready to take shot #4 tonight. Did pretty

> well this last week and worked almost full days all week with the

> exception of Wednesday which I took off at about 1:30pm. I've

> noticed something new though and I'm wondering if anyone else

> experienced this. My gums are starting to bleed quite a bit when

I

> brush my teeth. This just started a few days ago and I wonder if

I

> should be concerned about it. I'd appreciate some input.

> Thanks,

>

[Guest guest]

Hi, Kate.

Bloody nose in the morning is a sign of very low humidity in your

home. You are already drying up from the treatment, so you may want

to humidify your home a little. Simple things like letting the

shower steam into your house instead of out the window can make a

difference. Boil some water in a kettle. Inhale some hot steam

before blowing your nose. Buy some saline spray for your nose.

Hugs and prayers,

Suzy

> hi , I just got shot three yesterday. So far so gooood. I have

> not had the gum bleeding but I have had a blood nose in the

> mornings. I don't know if this is common. Maybe some one will let

us

> know...Kate

[Guest guest]

Kate,

So glad to hear things are going well for you! I did shot 4 on Friday. I think

I'm starting to suffer from some depression. Cried myself to sleep on Saturday

night and felt very tired and tormented. Lots of feeling like I'm letting

everyone down. Can't care for my neice and nephew like I used to and having to

take off work early on some days and then not having the energy to keep my house

spotless like I normally do. Don't know why it is so important for me to try to

be everything to everyone but having a very hard time with lots of feelings of

worthlessness and frustration. I'm going to call the doctor today and see if he

thinks this is something we need to take care of now or should I let it go for

awhile. Don't want to be a whiner or weak about all this. I know its the

medicine and keep telling myself that but it doesn't make my feelings seem any

less real.

God Bless..........

kate <kla116@...> wrote:

hi , I just got shot three yesterday. So far so gooood. I have

not had the gum bleeding but I have had a blood nose in the

mornings. I don't know if this is common. Maybe some one will let us

know...Kate

[Guest guest]

Suzy,

Thanks for the advice...I'll take it! I have a very bad habit of using a stiff

toothbrush and brushing the heck out of my teeth too hard and need to stop that

also. I'm going to get a softer toothbrush and look for the products you

suggested as well. Your right about nothing being " normal " ...bad choice of

words-ha!

Thanks,

Suzy <suzygriffin@...> wrote:

, I wouldn't call anything we experience while on tx 'normal'

but bleeding gums are common. You may also get sores inside or

outside of your mouth. I did.

Make sure you have no dental work done while on tx. Our oral

tissues take 3x as long to heal ...

You are doing great! Try using a diluted!!!salt rinse. Also, there

are several good toothpastes and rinses made for people on chemo. I

used 'Biotene' and even used their fake saliva (yes, you can get it

when you don't have it anymore, lol) during the entire treatment.

Mainly, try not to irritate your gums.

Hugs and prayers,

Suzy

> Hello all...I'm getting ready to take shot #4 tonight. Did pretty

> well this last week and worked almost full days all week with the

> exception of Wednesday which I took off at about 1:30pm. I've

> noticed something new though and I'm wondering if anyone else

> experienced this. My gums are starting to bleed quite a bit when

I

> brush my teeth. This just started a few days ago and I wonder if

I

> should be concerned about it. I'd appreciate some input.

> Thanks,

>

[Guest guest]

Welcome and let us know how we can help you. This is an awesome

place for compassion and information.

What meds. is currently on and how is he faring at this

point? How are you doing? Have you found a local support group?

I have heard the Missouri has many state funded programs and

information for JRA.

Here I am asking all the questions when you are probably bursting

with questions. Tell us more and we'll chime in.

Best wishes that you're on the road to control of this disease.

Stacia and Hunter 8 systemic, iritis

[Guest guest]

Welcome Misty.

I also am new to JRA. I was wondering what trouble was having in

school? I was just wondering if it was disease related. As the process for

special ed takes so long here, I was curious if I should be preparing for that

battle. We did switch from day care to home care for Sami. Mainly, they were

not geared to her special needs of not getting too cold, etc. She has a desire

to do everything everyone else does. However, she would end up so sick all the

time.

Gramma Deb (Sami, 2, poly)

California

Hello

I'm new to this list. I have visited for some time, but just

found this list recently.

I have a 6 yr old son who was recently diagnosed with JRA,

systemic onset. He was hospitalised this past April with pneumonia

and joint stiffness, then, when his lungs cleared, continued to have

a fever and broke out in a rash. He wound up spending a total of 22

days in 3 different hospitals. The last one, Cardinal Glennon

Children's Hospital in St Louis, Mo, is where he was diagnosed and

where he goes for follow-up visits every couple of months.

He started kindergartten this year (his 6th birthday was the first

day of school), but he was having so much trouble that we have since

decided to home school him. I also have 2 older children, Dorothy is

14 and Theodore is 12.

[Guest guest]

Hi, and welcome to the list. You have found a place with lots of info

and compassion. Ask any questions you may have, someone will probably

know or be able to point you in the right direction. I hope is

feeling well today, Michele ( 17, pauci & spondy)

Hello

I'm new to this list. I have visited for some time, but just

found this list recently.

I have a 6 yr old son who was recently diagnosed with JRA,

systemic onset. He was hospitalised this past April with pneumonia

and joint stiffness, then, when his lungs cleared, continued to have

a fever and broke out in a rash. He wound up spending a total of 22

days in 3 different hospitals. The last one, Cardinal Glennon

Children's Hospital in St Louis, Mo, is where he was diagnosed and

where he goes for follow-up visits every couple of months.

He started kindergartten this year (his 6th birthday was the first

day of school), but he was having so much trouble that we have since

decided to home school him. I also have 2 older children, Dorothy is

14 and Theodore is 12.

[Guest guest]

is currently on naproxen twice a day and is being weaned off

of prednisone. He has a lot of joint swelling and stiffnes, which is

especially noticable on damp mornings. We haven't really looked for

any area support groups. Right now, we're just focusing on trying to

get 's symptoms under control.

Misty

-- In , " staciar101 " <staciar@c...> wrote:

>

> Welcome and let us know how we can help you. This is an awesome

> place for compassion and information.

>

> What meds. is currently on and how is he faring at this

> point? How are you doing? Have you found a local support

group?

> I have heard the Missouri has many state funded programs and

> information for JRA.

>

> Here I am asking all the questions when you are probably bursting

> with questions. Tell us more and we'll chime in.

>

> Best wishes that you're on the road to control of this disease.

>

> Stacia and Hunter 8 systemic, iritis

[Guest guest]

The school actually seemed very willing to accomodate in

several areas. He just couldn't cope with getting up at an early

hour and getting moving. He tends to be stiff until 9 or 10 in the

mornings and was coming home from school hurting. We are hoping he

will be able to attend next year, but we will continue to home

school him if it is necesary. My husband is home all day, so

childcare is not an issue. The schools here also mentioned they have

a program where a teacher can come by the house, but it would have

been after school hours, which would not suit our schedule.

Misty

[Guest guest]

Dear Misty, It is just my two cents worth, but please do not hesitate to

ask the doctor about putting your child on a dmard. A dmard is a disease

modifying anti rheumatoid drug. It can stop the progression of the disease,

and sometimes even put a child in remission. I say this, for our daughter

n was first put on only naprosyn the first few months and we suffered

through it. That was five years ago, and oh, have we learned so much since

then. n was in fifth grade at the time, and we started to homeschool

her for a few months. She would still go to school for part days when she

could, and I would fill in the rest. Good luck. (n, 15,

systemic)

Re: Hello

>

>

>

> is currently on naproxen twice a day and is being weaned off

> of prednisone. He has a lot of joint swelling and stiffnes, which is

> especially noticable on damp mornings. We haven't really looked for

> any area support groups. Right now, we're just focusing on trying to

> get 's symptoms under control.

>

> Misty

>

>

> -- In , " staciar101 " <staciar@c...> wrote:

> >

> > Welcome and let us know how we can help you. This is an awesome

> > place for compassion and information.

> >

> > What meds. is currently on and how is he faring at this

> > point? How are you doing? Have you found a local support

> group?

> > I have heard the Missouri has many state funded programs and

> > information for JRA.

> >

> > Here I am asking all the questions when you are probably bursting

> > with questions. Tell us more and we'll chime in.

> >

> > Best wishes that you're on the road to control of this disease.

> >

> > Stacia and Hunter 8 systemic, iritis

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

> Dear Misty, It is just my two cents worth, but please do not

hesitate to

> ask the doctor about putting your child on a dmard. A dmard is a

disease

> modifying anti rheumatoid drug. It can stop the progression of

the disease,

> and sometimes even put a child in remission.

I believe the dr plans on putting him on a dmard, but wants to wean

him off the prednisone first. We have had some trouble with getting

his appointments, so he is behind what they had scheduled. At one

point, the dr had wanted to see him in 5 weeks, then her office

rescheduled him for 12 weeks later. She was not happy. Neither were

we, especially since that would have put him at the drs on his

birthday. He really hates drs now, the first thing he asks is " No

needles? "

Misty