New to Group

[Guest guest]

Welcome Ron!

Well... i used ginseng a lot to keep myself at work. Drink a lot of water,

rest as much as possible. Sometimes I sleep from the time I get home till

time to get up for work.

I just started combo last friday Ron. So far, no sides. Hang in there!

alley/

ICQ 12631861

alleypat@...

http://www.flash.net/~alleypat

http://community.dallasnews.com/dmn/dfwliver

[Guest guest]

Welcome Ron!

Well... i used ginseng a lot to keep myself at work. Drink a lot of water,

rest as much as possible. Sometimes I sleep from the time I get home till

time to get up for work.

I just started combo last friday Ron. So far, no sides. Hang in there!

alley/

ICQ 12631861

alleypat@...

http://www.flash.net/~alleypat

http://community.dallasnews.com/dmn/dfwliver

[Guest guest]

Welcome Ron!

Well... i used ginseng a lot to keep myself at work. Drink a lot of water,

rest as much as possible. Sometimes I sleep from the time I get home till

time to get up for work.

I just started combo last friday Ron. So far, no sides. Hang in there!

alley/

ICQ 12631861

alleypat@...

http://www.flash.net/~alleypat

http://community.dallasnews.com/dmn/dfwliver

[Guest guest]

Welcome Ron!

Well... i used ginseng a lot to keep myself at work. Drink a lot of water,

rest as much as possible. Sometimes I sleep from the time I get home till

time to get up for work.

I just started combo last friday Ron. So far, no sides. Hang in there!

alley/

ICQ 12631861

alleypat@...

http://www.flash.net/~alleypat

http://community.dallasnews.com/dmn/dfwliver

[Guest guest]

Dear Ron: Sleep more. Good luck on your treatment. Diane

[Guest guest]

Dear Jim, Welcome to the group. This group has been a lifesaver for me. I

have learned so much from this group. Our daughter was diagnosed last

November at the age of 10. She has systemic JRA. She is currently on

naprosyn, plaquenil , and 2mg prednisone. She still has morning stiffness

to some degree, but it doesn't not impact her mobility in the morning. She

has stiffness in her hands off and on thru out the day. She doesn't have

the normal energy of an 11 year old, as she goes to bed at 8 PM . We will

be travelling your way next week. We are off to Emporia and Olpe, Kansas.

Not too many people go on vacation To Kansas in August. I think we are a

bit crazy.

>From: Cubsmaniacs@...

>Reply- egroups

> egroups

>Subject: New to group

>Date: Fri, 28 Jul 2000 03:19:19 -0000

>

>Somehow I stumbled into this group recently and am extremely glad I

>did. My daughter, , was diagnosed early this year with JRA.

>She was a healthy happy 2 year old when it suddenly appeared. She

>would not attempt to walk until as late as 4 pm some days. Our

>doctor began trating her with 1tsp. of Ibuprofin 4 times a day, 1tsp.

>of Prednisone twice a day and .2 ml of Mtx. once a week. She

>responded immediately. As time went on we reduced the dosage of

>Pred. gradually but kept her on the Ibuprofin and Mtx. After 5

>months she was off the Pred. completely. Then after about 4 weeks

>the morning stiffness was back and she was not up and about until

>noon or later. We have gone back to 1/4 tsp. of Pred. daily and she

>is doing very well. We have found that giving her the Pred. about 1-

>2 hours prior to her getting up allows her full range of motion in

>the morning.

>This group is the sort of medicine we parents need. A place we can

>go to share success stories, get advice, ask questions and lend

>support to each other. I am glad I came across it and hope all is

>progressing well for everyone.

>

>Jim Kresl

>Olathe, Ks

>

>

>

>

>For links to websites with JRA info visit:

>http://www.geocities.com/Heartland/Village/8414/Links.html

>

________________________________________________________________________

Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com

[Guest guest]

Hi ! glad to meet you

alley/

ICQ 12631861

alleypat@...

http://www.flash.net/~alleypat

[Guest guest]

Hi ! glad to meet you

alley/

ICQ 12631861

alleypat@...

http://www.flash.net/~alleypat

[Guest guest]

Hi ! glad to meet you

alley/

ICQ 12631861

alleypat@...

http://www.flash.net/~alleypat

[Guest guest]

Hi ! glad to meet you

alley/

ICQ 12631861

alleypat@...

http://www.flash.net/~alleypat

[Guest guest]

Hi

Do you have problems walking due to fatique or other reasons?

I have Diabetic neuropathy which causes pain in the feet. I haven't got to

the point of needing tags but I wonder when I will

Re: New to group

> Hi ! glad to meet you

> alley/

> ICQ 12631861

> alleypat@...

> http://www.flash.net/~alleypat

>

>

>

>

>

[Guest guest]

Hi

Do you have problems walking due to fatique or other reasons?

I have Diabetic neuropathy which causes pain in the feet. I haven't got to

the point of needing tags but I wonder when I will

Re: New to group

> Hi ! glad to meet you

> alley/

> ICQ 12631861

> alleypat@...

> http://www.flash.net/~alleypat

>

>

>

>

>

[Guest guest]

Hi

Do you have problems walking due to fatique or other reasons?

I have Diabetic neuropathy which causes pain in the feet. I haven't got to

the point of needing tags but I wonder when I will

Re: New to group

> Hi ! glad to meet you

> alley/

> ICQ 12631861

> alleypat@...

> http://www.flash.net/~alleypat

>

>

>

>

>

[Guest guest]

Hi

Do you have problems walking due to fatique or other reasons?

I have Diabetic neuropathy which causes pain in the feet. I haven't got to

the point of needing tags but I wonder when I will

Re: New to group

> Hi ! glad to meet you

> alley/

> ICQ 12631861

> alleypat@...

> http://www.flash.net/~alleypat

>

>

>

>

>

[Guest guest]

The fatigue is due the the hep mostly. Now with the treatment I don't have

any pain in my joints like I did before. I just get exhuasted and legs get

shakey and I get weak. Sometimes, I feel like I'm gonna pass out, so I just

sit down where ever I'm at and rest till it's over. At first it was scary,

but I realized heck if I did pass out I'd still be breathing so now not

such a big deal.

alley/

ICQ 12631861

alleypat@...

http://www.flash.net/~alleypat

[Guest guest]

The fatigue is due the the hep mostly. Now with the treatment I don't have

any pain in my joints like I did before. I just get exhuasted and legs get

shakey and I get weak. Sometimes, I feel like I'm gonna pass out, so I just

sit down where ever I'm at and rest till it's over. At first it was scary,

but I realized heck if I did pass out I'd still be breathing so now not

such a big deal.

alley/

ICQ 12631861

alleypat@...

http://www.flash.net/~alleypat

[Guest guest]

The fatigue is due the the hep mostly. Now with the treatment I don't have

any pain in my joints like I did before. I just get exhuasted and legs get

shakey and I get weak. Sometimes, I feel like I'm gonna pass out, so I just

sit down where ever I'm at and rest till it's over. At first it was scary,

but I realized heck if I did pass out I'd still be breathing so now not

such a big deal.

alley/

ICQ 12631861

alleypat@...

http://www.flash.net/~alleypat

[Guest guest]

The fatigue is due the the hep mostly. Now with the treatment I don't have

any pain in my joints like I did before. I just get exhuasted and legs get

shakey and I get weak. Sometimes, I feel like I'm gonna pass out, so I just

sit down where ever I'm at and rest till it's over. At first it was scary,

but I realized heck if I did pass out I'd still be breathing so now not

such a big deal.

alley/

ICQ 12631861

alleypat@...

http://www.flash.net/~alleypat

[Guest guest]

Jim,

Have not heard from you in a while.

How is ?

[ & Skyler]

New to group

Somehow I stumbled into this group recently and am extremely glad I did. My daughter, , was diagnosed early this year with JRA. She was a healthy happy 2 year old when it suddenly appeared. She would not attempt to walk until as late as 4 pm some days. Our doctor began trating her with 1tsp. of Ibuprofin 4 times a day, 1tsp. of Prednisone twice a day and .2 ml of Mtx. once a week. She responded immediately. As time went on we reduced the dosage of Pred. gradually but kept her on the Ibuprofin and Mtx. After 5 months she was off the Pred. completely. Then after about 4 weeks the morning stiffness was back and she was not up and about until noon or later. We have gone back to 1/4 tsp. of Pred. daily and she is doing very well. We have found that giving her the Pred. about 1-2 hours prior to her getting up allows her full range of motion in the morning. This group is the sort of medicine we parents need. A place we can go to share success stories, get advice, ask questions and lend support to each other. I am glad I came across it and hope all is progressing well for everyone.Jim KreslOlathe, KsFor links to websites with JRA info visit: http://www.geocities.com/Heartland/Village/8414/Links.html

[Guest guest]

Dear Sherry, Thank you for sharing your story, and giving us parents hope.

My daughter,n, got systemic JRA at age 10. Many thoughts of the future

are in my mind, and what will she be able to accomplish and not accomplish.

Thank you.

>From: Seraph926@...

>Reply-

>

>Subject: New to group

>Date: Tue, 03 Apr 2001 12:31:31 -0000

>

>Hi,

>

>My name is Sherry. I was diagnosed with JRA when I was 11 years

>old. I remember being very confused at first and then scared. My

>mother of course was my direction. I was just a follower. When it

>was time for me to go to Dr.'s I would go and then get on with my

>life. I remember being pulled out of all my activities. My favorite

>being gymnatics. I remember being pulled from my PE classes in

>school and put on the bleachers to watch the other children play

>during the class(what was wrong with these people, how cruel). I

>have had many days with pain and many good days without too. I

>remember thinking about my future and how my disease might progress.

>I remember thinking was I going to be a cripple? Were my fingers

>going to be crooked and deformed? I had JRA in every joint but by

>back and hips. It would flare wherever it wanted to. My hands are

>what bothered me the most. I remember eating was a task sometimes

>because my jaw was so painful. There is some good to this story

>though. Although most my life I had pain; I grew up and experienced

>many of the things that " normal " people experienced. I dated,

>graduated college, got married and had three wonderful boys. My

>husband has seen me at my worst and my best. He of course is heaven

>sent. I remember the days when he would have to comb my hair and

>help me dress because the pain was so bad. He is and will always be

>there for me. My family is very supportive and I have wonderful

>friends who stayed with me through it all and also a super Dr. in the

>Boston area. ALL MY FEARS DID NOT COME TRUE. If you remember

>anything about this letter just remember those words. I have since

>been pain and medicine free for about 4 years now for some reason.

>The birth of my last child I guess altered my immune system somehow.

>Let's hope it just keeps going. I am enjoying my hiatus from

>disease. Infact, I wake up everyday and thank God I have one more

>day without pain. If anyone would like to e-mail me I would love to

>hear from you. I don not know how I could help but maybe your

>children have questions about how it was like growing up with JRA.

>Sherry.. : )

>

>

>

>To manage your subscription settings, please visit:

>

>

>For links to websites about JRA:

>http://www.geocities.com/Heartland/Village/8414/Links.html

>

>

[Guest guest]

In a message dated 4/3/01 7:32:44 AM Central Daylight Time, Seraph926@...

writes:

Hi,

My name is Sherry.  I was diagnosed with JRA when I was 11 years

old.  I remember being very confused at first and then scared.  My

mother of course was my direction.  I was just a follower.  When it

was time for me to go to the  Dr.'s, I would go and then get on with my

life.  I remember being pulled out of all my activities. My favorite

being gymnastics.  I remember being pulled from my PE classes in

school and put on the bleachers to watch the other children play

during the class (what was wrong with these people?, how cruel).  I

have had many days with pain and many good days without too.  I

remember thinking about my future and how my disease might progress.

I remember thinking was I going to be a cripple? Were my fingers

going to be crooked and deformed?  I had JRA in every joint but by

back and hips.  It would flare wherever it wanted to.  My hands are

what bothered me the most.  I remember eating was a task sometimes

because my jaw was so painful. There is some good to this story

though.  Although most my life I've had " controlled pain " ;  I grew up and

experienced

many of the things that " normal " people experienced. I dated,

graduated college, got married and had three wonderful boys.  My

husband has seen me at my worst and my best.  He of course is heaven

sent.  I remember the days when he would have to comb my hair and

help me dress because the pain was so bad.  He is and will always be

there for me.  My family is very supportive and I have wonderful

friends who stayed with me through it all and also a super Dr. in the

Boston area (whatever you do get the best Dr!).  ALL MY FEARS DID NOT COME

TRUE. My fingers are not crooked or deformed. In fact, I have no physical

signs of JRA anywhere and I have had it for over 20 years.  I do realize that

everyone's disease may progress differently but what I am trying to say is

try not to worry, things will work out and not to think of the worst. If you

remember anything about this letter just remember those words about the fear.

The group help was not so readily available back when I was diagnosed.  No

such thing as Internet. So I think today's JRA patients will fair better.  I

know the feeling that your children are going through.  I have lived it.  I

know you will all give them the support they need and the help of talking

about it to others that have the same problem.  I think that is important.  I

think children with any disease need to speak, if old enough, to others in

the same boat so they do not feel alone.  I did not know one person who had

JRA, even today.  I survived it well though.  I kept a positive attitude and

somewhat tried to ignore it and live my life like the other children. I have

since been pain and medicine free for about 4 years now for some reason.  The

birth of my last child altered my immune system somehow.  Let's hope it just

keeps going. I am enjoying my hiatus from disease.  I wake up everyday and

thank God I have one more day without pain. If anyone would like to e-mail me

I would love to hear from you.  I do not know how I could help.  I wish I

could but just to let all the parents know that the best may be to come and

the future does not have to be a worry. Keep your chins up and smiling with a

positive attitude. I have been there.

Sherry.. : )

P.S.  I used to wrap socks around my hands at night and keep my hands closed

over them while I slept. Contrary to wearing the splints I was supposed to

wear to keep them straight.  I would wake in the morning being able to use my

hands and not have straight stiff paddles to work with. It worked for me.

>

>

[Guest guest]

Sherry, your story is a wonderful one! Although having to deal with this

disease for so many years, your life experiences appear to have out weighed

the bad. Have you ever considered talking with other children affected with

this disease? My daughter is now into this (officially diagnosed)

for two months. Today she asked me if she would die from this. Of course I

reinforced that she would not. Anyways, you would do good talking with other

children and showing them all the good that can happen even with this

disease. Thanks for your story and God Bless!

Dee Dee

[Guest guest]

Hi Debbi,

Tyler is Pauci and also has asthma and allergies. His Pulminologist

thinks that the JRA is somehow related to his allergies, but Rheumy

disagrees. I recently met a Holistic nurse who also believes the two

are related.

I have not been able to locate the correlation between the two in any

Medical Journals or proven cases reported.

The Holistic Nurse seems to think that all of Tyler's health problems

are related to diet and lack of minerals, she suggested an all

natural diet but Tyler is 5 and cuttting out a McMac is just unheard

of. He is on vitamins and does eat pretty well (as well as a picky

eater can)

I wish I had some wonderful advise for you, but I can offer support

and tell you that I have been where you are. It is frustrating having

more than one medical issue to deal with at a time and not knowing

how the two are related if at all. You could try a Homeopathic(sp?)

practioner for a consult,just for suggestions.

Good Luck and my thought are with you,

Chellie- Mom 2 Tyler systemic changed to Pauci

In @y..., gladswan@a... wrote:

> Hi- I am the mom of a 12 yr.old girl with pauci JRA (probable

> psoriatic) no confirmation of this- had had some dry patches but no

> psoriasis. The joint involvement seems to follow this pattern-she

was

> diagnosed about 4 1/2 yrs ago. On Naprosyn 375 twice a day-has had

2

> joints injected with cortisone 1 with great results-the other so-

so.

> This was about 3 yrs ago. She has a new joint since June and upping

> the Naprosyn has not helped with swelling but pain is better now-

will

> probably try injecting that one at appointment next week. Eye exams

> have been good and we are so thankfull for that. She is active in

> sports and quite a trooper. I read about so many that are suffering

> more and I feel thankfull that we are able to control this mostly.

> Has anyone else had this type of JRA? Has anyone had a long

remission

> where they did not have to take meds? Also what about Asulfidine--

> he's thinking of adding that? Also she was recently diagnosed with

> an allergy to corn--what a major pain!! Anyone else with food

allergy

> and is there any connection? Thanks-it's great to know that there

> are others out there. Debby

[Guest guest]

Hi ,

Welcome to the group. The people here have been a source of so much

comfort and support for me. I hope we can do the same for you. If you don't

mind my asking, what is your son's name? My daughter's name is Riley. She

was diagnosed with polyarticular jra in early May. She will be 5 August

13th. It's nice to meet you and again, welcome.

Ellie and Riley 4 poly

[Guest guest]

Hi , yes Vioxx is very good for my lower extrematies. if I miss a

dosage of two, I can baely wolk on my feet! So glad to hear your little

guy is doing well.

Rusty hugs from

Uncle Rusty Limbs