Re: (unknown)

[Guest guest]

Dear Kellie,

Nice to hear from you and that things are going good. Kate started out

with Naproxen but do to bruising and some scarring was taken off and put

on Ibuprofen then Methotrexate added. Was pulled off Methotrexate due to

liver counts going too high too fast. Is currently on Enbrel injections

along with the Ibuprofen, That seems to help keep things under control.

Had to have colonoscopy at 4 due to blood in stools but found only small

sores or fissures, no stomach bleeding. Is now also on Prilosec to help

with reflux problem. It's been a long 3 years! Please don't let me scare

you as we were told our daughter has an aggressive case and every child

is different. Some meds work fine on one child and not on others. She is

now 6 and plays pee-wee basketball and softball. She's like any other

child, only difference is some days has flairs and has to take things

slower. As far as she's concerned she's no different than anyone else.

(Thinks every kid goes to therapy, takes meds., etc...! ) Jra can be

sneaky so it's very important to keep up to date with drs. etc... on any

questions or concerns. Sounds like your doing good . Please write back

and keep in touch.

[Guest guest]

kellie, are you the same kellie that visited the arthritis insight chat? i

hope so, brandy

_________________________________________________________________

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[Guest guest]

Hi ,

Oh, you're so right! JRA can be very sneaky indeed : ) Sometimes, even when

things seem to be going really well, all of a sudden there's another unexpected

flare. Sometimes without rhyme or reason, it seems. It sounds like your little

girl has a very positive attitude. That always helps. Sorry to hear that those

first couple of years were so hard. I can definitely relate. Hopefully things

will stay more balanced from now on.

Take care,

Georgina

Dear Kellie,

Nice to hear from you and that things are going good. Kate started out

with Naproxen but do to bruising and some scarring was taken off and put

on Ibuprofen then Methotrexate added. Was pulled off Methotrexate due to

liver counts going too high too fast. Is currently on Enbrel injections

along with the Ibuprofen, That seems to help keep things under control.

Had to have colonoscopy at 4 due to blood in stools but found only small

sores or fissures, no stomach bleeding. Is now also on Prilosec to help

with reflux problem. It's been a long 3 years! Please don't let me scare

you as we were told our daughter has an aggressive case and every child

is different. Some meds work fine on one child and not on others. She is

now 6 and plays pee-wee basketball and softball. She's like any other

child, only difference is some days has flairs and has to take things

slower. As far as she's concerned she's no different than anyone else.

(Thinks every kid goes to therapy, takes meds., etc...! ) Jra can be

sneaky so it's very important to keep up to date with drs. etc... on any

questions or concerns. Sounds like your doing good . Please write back

and keep in touch.

[Guest guest]

Hi Dee Dee,

Just a short note to say hello, and to let you know that I'm really happy to

hear that your daughter has had so much improvement in recent weeks. That must

be such a relief to all of you. You are definitely right about how a positive

attitude can make a big difference. Keep those thoughts in mind, as your

daughter starts to decrease the prednisone. Okay?

It's not uncommon for a child to have some breakthrough pain and increased

symptoms of arthritis when the dose is first lowered. Hopefully, it won't take

too long before the methotrexate starts to work. It may become hard for her

again, temporarily, during the interim. And you know how hard it can be on us

parents, emotionally, to see our children having a hard time. It's sometimes a

very delicate balancing act, to try to get things under control well. Don't feel

too discouraged if she has some setbacks during the adjustments of meds. keep us

updated on how things go, okay?

Take care,

Georgina

Hello ,

I too am new to JRA as my daughter, , was diagnosed poly-JRA in

February. We got to a point when I had to give " piggy-back " rides

through the house to get things done (like taking meds, brushing teeth, etc).

We started out on naproxen (250mg 2x/day) and tylenol #3 for the pain. Two

weeks ago we started prednisone (10mg 1x/day) as we saw no releif with

naproxen. OK, I do agree, prednisone is a miracle drug, could write

again on her own, walk with less of a limp and got back involved in Tae Kwon

Do (which she is a brown belt/red strip - two promotions from a black belt).

Today we saw our Peds Rhuem and started methotrexate (5mg for two weeks and

10mg/week thereafter) and will decrease the prednisone on Monday to 5 mg.

All I can say is the happiness and playfulness in 's personnality

is so wonderful to see back. I hope we figure out the med routine without

too much difficulty. I truely believe in a positive attitude ~ which I did

not have about a week and a half ago.

This is a nice list of people who are sharing in all the same

experiences you are and is a wonderful support ~ best of luck!

Dee Dee ~ 's mom

[Guest guest]

Hi ,

Nice to meet you. Even though I wish it could have been under different

circumstances. I think you've stumbled upon a great source of information, right

here. This group has quite a few people who have lots of personal experience

with JRA. We're able to learn lots from one another. If you have any specific

questions just ask ... and if we can, we'll try to offer our advice or

suggestions.

Has your daughter seen a pediatric rheumatologist yet? If not, that would

probably be the best thing you can do for her right now. As helpful as a regular

pediatrician may be, these children often need the expertise of a specialist. Is

your daughter taking any medication? If so, what?

Well, I better say so long for now, or else I'll be the one asking all of the

questions : ) Keep in touch, okay?

Take care,

Georgina

Hello out there my name is . we were just told about a month

ago that my duaghter p[robably had jra(setm. I am not at all informed

on this and I have tried to read up on it but it just seems to loose

me even more. Kay-lynn is only 4yrs. She started sleeping alot and

having high fevers about 6mths ago. And now here we are. if anyone

can give me any info it would be great.

Thanks for your help.

[Guest guest]

Those pill containers have helped to keep us organized, too : )

Aloha,

Georgina

Amy, thanks I have recently started that as these pills are getting a little

confusing, now the same colors (two of them). I have the one week and each

day broken to four parts. It's working!

Dee Dee

[Guest guest]

Dee Dee,

We use a " one weeks " pill box to keep everything straight. I fill it every

Sunday. That way there is no guessing on whether something was taken.

Amy

Re: (unknown)

> Hello ,

> I too am new to JRA as my daughter, , was diagnosed poly-JRA in

> February. We got to a point when I had to give " piggy-back "

rides

> through the house to get things done (like taking meds, brushing teeth,

etc).

> We started out on naproxen (250mg 2x/day) and tylenol #3 for the pain.

Two

> weeks ago we started prednisone (10mg 1x/day) as we saw no releif with

> naproxen. OK, I do agree, prednisone is a miracle drug, could

write

> again on her own, walk with less of a limp and got back involved in Tae

Kwon

> Do (which she is a brown belt/red strip - two promotions from a black

belt).

> Today we saw our Peds Rhuem and started methotrexate (5mg for two weeks

and

> 10mg/week thereafter) and will decrease the prednisone on Monday to 5 mg.

> All I can say is the happiness and playfulness in 's

personnality

> is so wonderful to see back. I hope we figure out the med routine without

> too much difficulty. I truely believe in a positive attitude ~ which I

did

> not have about a week and a half ago.

> This is a nice list of people who are sharing in all the same

> experiences you are and is a wonderful support ~ best of luck!

>

> Dee Dee ~ 's mom

>

>

>

[Guest guest]

Amy, thanks I have recently started that as these pills are getting a little

confusing, now the same colors (two of them). I have the one week and each

day broken to four parts. It's working!

Dee Dee

[Guest guest]

, yes i am the same kellie from the jra world chat. how are you doing?

good i hope. feel free to e-mail me anytime ok.. kellie

>From: " Hendricks " <brandy_erin@...>

>Reply-

>

>Subject: Re: (unknown)

>Date: Fri, 16 Mar 2001 22:59:03 -0500

>

>kellie, are you the same kellie that visited the arthritis insight chat? i

>hope so, brandy

>_________________________________________________________________

>Get your FREE download of MSN Explorer at http://explorer.msn.com

>

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com

[Guest guest]

Tom,

What is YOUR education level? Did you pass reading? Nowhere was it stated

that anyone " got HIV " from drug abuse and unhealthy living. The statement

was that their thymus glands were destroyed which is why they had low t-cell

counts despite the fact that they were very ill. (Probably ill because of

years of substance abuse as well.) Normally sick people would be expected to

have high t-cell counts.

The only nonsense here is the whole idea of using t-cell counts as a

surrogate marker. This was shown to be invalid in the early 90's by the

Concorde Study and the study at St. 's as well.

Is it simply aging that lessens thymus function? Or is it an accumulation of

toxins or other factors? I don't think this area has been sufficiently

studied for you to jump to any conclusions.

And my name is Ed, not . (Are you sure you can read?) I know of no one

on this planet that claims to be HIV+ longer than I have been. I am in great

health with no medical intervention. So are the scores of former AIDS

victims I've counseled and work with over the past 16 years or so. That says

more than any number of initials after my name.

If you want to learn three simple things you can do get over AIDS, check out

my website at sobehealthy.com.

Ed

In a message dated 3/16/2001 2:39:33 PM Eastern Standard Time,

tomg802@... writes:

> ,

> I have not read anything so offensive and uninformed in years. Stating

that

> everyone with HIV got it " because many years of drug abuse and unhealthy

> living had destroyed their thymus glands " .

>

> , before you make such claims you ought to study human biology, the

> single thymus gland humans are born with naturally stops working in ALL

> humans as we age, regardless of health. Before you go spilling off more

> nonsense, what exactly is your education level?

> Tom

[Guest guest]

Tom I have a degree in Science, majoring in pharmacology.

I have not read anything so offensive and uninformed in years. Stating that everyone with HIV got it "because many years of drug abuse and unhealthy living had destroyed their thymus glands".

, before you make such claims you ought to study human biology, the single thymus gland humans are born with naturally stops working in ALL humans as we age, regardless of health. Before you go spilling off more nonsense, what exactly is your education level?

[Guest guest]

remove me from the group

[Guest guest]

well, what a small world, lol. i see you have added me to your msn contact

list and i have ok'd it on my end, of course. so, ill see ya online

sometime...although i can be a nite owl sometimes. good thoughts to you and

family, brandy

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com

[Guest guest]

We just started doing this, too and it helps tremendously with my teenager

because I was tired of nagging him about his meds and he was tired of

hearing it. This way I can just check and see if he has taken them. It also

helps him remember because he sees them sitting there. Michele

Re: (unknown)

Dee Dee,

We use a " one weeks " pill box to keep everything straight. I fill it every

Sunday. That way there is no guessing on whether something was taken.

Amy

Re: (unknown)

> Hello ,

> I too am new to JRA as my daughter, , was diagnosed poly-JRA in

> February. We got to a point when I had to give " piggy-back "

rides

> through the house to get things done (like taking meds, brushing teeth,

etc).

> We started out on naproxen (250mg 2x/day) and tylenol #3 for the pain.

Two

> weeks ago we started prednisone (10mg 1x/day) as we saw no releif with

> naproxen. OK, I do agree, prednisone is a miracle drug, could

write

> again on her own, walk with less of a limp and got back involved in Tae

Kwon

> Do (which she is a brown belt/red strip - two promotions from a black

belt).

> Today we saw our Peds Rhuem and started methotrexate (5mg for two weeks

and

> 10mg/week thereafter) and will decrease the prednisone on Monday to 5 mg.

> All I can say is the happiness and playfulness in 's

personnality

> is so wonderful to see back. I hope we figure out the med routine without

> too much difficulty. I truely believe in a positive attitude ~ which I

did

> not have about a week and a half ago.

> This is a nice list of people who are sharing in all the same

> experiences you are and is a wonderful support ~ best of luck!

>

> Dee Dee ~ 's mom

>

>

>

[Guest guest]

Jerry!

My prayers are with you and your mom!

Pam

[Guest guest]

Jerry, I'm sorry to hear about you're mother's problem. I'll be thinking of you both. Best wishes.

Harper

[Guest guest]

Jerry:

My family prayers are with you and your family. Having suffered a heart

attack in October, I know the doctors in the coronary care unit will

help her.

God bless you

Clyde

--

=========================================================+

Help save a life, become an organ and tissue donor today.|

=========================================================+

[Guest guest]

Jerry,

<<<<< hug>>>> I certainly will keep your mother in my prayers. I'll pray for you, too. I know what it's like to have a parent in the hospital. Be sure to take care of yourself, as best you can.

Don

Terradon Unlimited

Creative Embroidery

http://www.TerradonUnlimited.com

"People who ask me how we can still have such a positive attitude after all we’ve been through, have it all wrong…We’ve been able to get through all that we have BECAUSE we have a positive attitude". Don Hanson 8/2000

-----Original Message-----From: gefox@... [mailto:gefox@...]Sent: Tuesday, March 20, 2001 5:39 PM Subject: [ ] (unknown)dear friends... i`m asking that you offer prayers for my mother... itook her to the hospital today...she has pulmonary edema from either aheart attack or heart failure and she is in coronary care. I know thatprayers do work and I know that this group will help mom.. thankseveryone...love and serenityjerry btw... i got back my second good report in row

[Guest guest]

I will certainly add your mother (and you) to my prayers tonight. Hang in

there and remember to take of yourself.

AIH (0101)

Illinois

[Guest guest]

Jerry,

my prayers are with you and your mom,

keep us updated,

(Sierra's Mom)

--- gefox@... wrote:

> dear friends... i`m asking that you offer prayers

> for my mother... i

> took her to the hospital today...she has pulmonary

> edema from either a

> heart attack or heart failure and she is in coronary

> care. I know that

> prayers do work and I know that this group will help

> mom.. thanks

> everyone...

> love and serenity

> jerry

>

> btw... i got back my second good report in row

>

>

__________________________________________________

[Guest guest]

Dear Jerry,

Our prayers and support are with you and your mom. The Lord does hear us all.

God bless you,

[Guest guest]

-

How are things going for you & Sierra?

Re: [ ] (unknown)

> Jerry,

>

> my prayers are with you and your mom,

> keep us updated,

>

> (Sierra's Mom)

>

>

>

>

> --- gefox@... wrote:

> > dear friends... i`m asking that you offer prayers

> > for my mother... i

> > took her to the hospital today...she has pulmonary

> > edema from either a

> > heart attack or heart failure and she is in coronary

> > care. I know that

> > prayers do work and I know that this group will help

> > mom.. thanks

> > everyone...

> > love and serenity

> > jerry

> >

> > btw... i got back my second good report in row

> >

> >

>

>

> __________________________________________________

>

[Guest guest]

In a message dated 3/21/01 5:22:43 PM Eastern Standard Time,

okieleah@... writes:

<< The teacher, , 36, was arrested at McDonogh 32 in

Algiers. He was booked on two counts of felony cruelty to a juvenile due to

the apparent force used in the attack. >>

SICK...SICK.....SICK!!!!!!!!!!!!!!!

Gail

[Guest guest]

yes i did.. lol. hopefully i'll see you online sometime..

>From: " Hendricks " <brandy_erin@...>

>Reply-

>

>Subject: Re: (unknown)

>Date: Sun, 18 Mar 2001 22:34:20 -0500

>

>well, what a small world, lol. i see you have added me to your msn contact

>list and i have ok'd it on my end, of course. so, ill see ya online

>sometime...although i can be a nite owl sometimes. good thoughts to you

>and

>family, brandy

>_________________________________________________________________

>Get your FREE download of MSN Explorer at http://explorer.msn.com

>

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com

[Guest guest]

Hi Roni,

Herx reactions can happen anytime that the antibiotic is changed or the dose

is changed up or down. Always make any changes gradually by introducing a new

antibiotic in tiny doses first and make changes gradually up or down when

changing

the dose of the antibiotic you're already taking.

Chris.

>Hello everyone:

>

>Thanks for all of your help in the past, I have yet

>another question being new to this AP. When I started

>the minocin I had a herx reaxtion. Then when I added

>the biaxin (I started too high too fast) I had a MAJOR

>reaction. My hands swelled and that horrible itch

>typical of scleroderma came back and my fingers crack at

>the slightest touch. This hasn't happened in quite a

>while. My hands are somewhat better and still dry and

>slightly effected from this last herx.

>

>Here's my question...Once I go back on the biaxin or

>continue with the AP will herxes reoccur or just when

>you increase the doseage or add something new? I'm

>trying to anticipate what to expect when I get back on

>the biaxin (at a lower dose).

>

>Thanks,

>Roni

>

>

>

>

>

>To unsubscribe, email: rheumatic-unsubscribeegroups

>

>

>