15y/o daugter with Polyarticular JRA and Raynaud's Syndrome

[Guest guest]

Hello;

I posted a message a while back and I am not sure that I did it right.

First I am a Mom of two children one is 19, : he was diagnosed

in 1983 with systemic JRA with a ?autoimmune disorder. He was on

prednisone daily for three 1/2 years, colchizine, and 12 adult asprin

a day. He now shows signs of joint calcification and has dificulty

still with fever if he get's tired. He maintains his diet and

excersice regimen and is only on asperin at this time.

They had told me the likely chance of another child having JRA would

be rare.

My daughter Lacy, 15y/0 was diagnosed with Polyarticular JRA and

raynaud's syndrome this spring. We have tried many types of therapy

and even prednisone; none seem to be decreasing the flare ups or the

sed rate. Her last sed rate was 30 on 3mg. of predisone and naproxin

375mg. She is ready to do anything if it will decrease the pain and

increase her ability to do everything she would like to do.

Please do you have any ideas to help me help her. It seems that we

should have so much better treatment now.

Thanks;

amyannk

[Guest guest]

Hi Amyannk !

Oh my gosh .... how sad that your second child has now also been

diagnosed with JRA! My 3 yr old daughter has Poly and it never

really occurred to me that my other two daughters (now 5 yrs and 1

yr) could also be susceptible to the disease one day....

Anyway, just wanted to let you know that my daughter takes MTX

(12.5mg weekly) and has had her joints injected twice ... and she is

doing great! A few months ago she was virtually crippled with pain,

stopped walking, and couldn't even get herself out of bed in the

mornings but now she is running around outside with her sisters and

loving life!

Obviously the prednisone alone isnt enough for your daughter so I

really hope that her doctor will be able to come up with some

additional treatments to help ease her pain!

Best wishes to you, and Lacy (hope I remembered their names

correctly!!)

Vicky

Mum to Calista - 3yrs - Poly

[Guest guest]

Hi,

My daughter is 15 with poly as well. She takes methotrexate, celebrex, prednisone, enbrel and tylenol (plus a few for side effects). Doctors have different routines but from our rheumy says is that Prednisone is for getting you through a flare and the others are for maintenance. He does not use Pred as maintenance; his goal is to decrease and get rid of the Pred as soon as able. Call back. Let them know she is not better, still hurting. The MTX can take a while to work but seems to be helpful to many. Keep calling until you get something under control.

e, with 15yo daughter joe with poly

amyannk wrote:

Hello;I posted a message a while back and I am not sure that I did it right.First I am a Mom of two children one is 19, : he was diagnosed in 1983 with systemic JRA with a ?autoimmune disorder. He was on prednisone daily for three 1/2 years, colchizine, and 12 adult asprin a day. He now shows signs of joint calcification and has dificulty still with fever if he get's tired. He maintains his diet and excersice regimen and is only on asperin at this time.They had told me the likely chance of another child having JRA would be rare. My daughter Lacy, 15y/0 was diagnosed with Polyarticular JRA and raynaud's syndrome this spring. We have tried many types of therapy and even prednisone; none seem to be decreasing the flare ups or the sed rate. Her last sed rate was 30 on 3mg. of predisone and naproxin 375mg. She is ready to do anything if it will decrease the pain and increase her ability to do everything she would like to do.Please do you have any ideas to help me help her. It seems that we should have so much better treatment now. Thanks;amyannk

[Guest guest]

Diane:

Thanks for your note. Lacy is on Prednisone 5mg every day again now.

She was on prednisone 5mg per day and was decreased to 3 mg per day.

We are to see the DR. at Children's Hospital in denver on the 12 and

hope that we can discuss other medication combinations to help Lacy.

Thanks again; just reading the emial notes helps. When was

diagnosed in 1984 I did not have access to such suport.

Amyannk

[Guest guest]

Hi Amy,

My son has systemic onset, so that is where my experience is, but if they are

using prednisone to get the arthritis in control 3 mg seems like a very small

dose to start off with. My son is now on 3 mg a day of prednisolone, but that

is after a year long taper period. He started off at nearly 30 mg a day, plus

with some early steriod pulse treatments. The steriod dose is based on weight

and my son is a four year old weighing about 34 lbs currently.

Val

Rob's Mom (4,systemic)

In a message dated Wed, 31 Jul 2002 5:40:39 PM Eastern Standard Time,

amykemper@... writes:

>

>

> Hello;

> I posted a message a while back and I am not sure that I did it right.

> First I am a Mom of two children one is 19, : he was diagnosed

> in 1983 with systemic JRA with a ?autoimmune disorder. He was on

> prednisone daily for three 1/2 years, colchizine, and 12 adult asprin

> a day. He now shows signs of joint calcification and has dificulty

> still with fever if he get's tired. He maintains his diet and

> excersice regimen and is only on asperin at this time.

>

> They had told me the likely chance of another child having JRA would

> be rare.

>

> My daughter Lacy, 15y/0 was diagnosed with Polyarticular JRA and

> raynaud's syndrome this spring. We have tried many types of therapy

> and even prednisone; none seem to be decreasing the flare ups or the

> sed rate. Her last sed rate was 30 on 3mg. of predisone and naproxin

> 375mg. She is ready to do anything if it will decrease the pain and

> increase her ability to do everything she would like to do.

> Please do you have any ideas to help me help her. It seems that we

> should have so much better treatment now.

> Thanks;

> amyannk

>

>

>

>

[Guest guest]

Hi Amyann,

My son Josh (age 13) is the one who has arthritis but my daughter Kayla, age 11, recently began complaining of pain in her knees. Usually the left knee, sometimes the right one. I haven't seen any visible, noticeable, inflammation and it's not 'all the time' but it was enough for me to mention it to our pediatrician. And then, when Josh saw his rheumatologist, he took a look at it too. I've read so many posts here about parents worried that another sibling might possibly be affected and the majority of times that doesn't seem to be the case ... but then when you do hear from parents such as yourself, it makes it that much more real.

There are so many more possible treatment options available these days. It's a shame that your daughter's doctor didn't present this type of information to you but if you stick around here for a while, you'll be amazed at how quickly you will learn about the different meds and begin to familiarize yourself with how they're used in treating arthritis. Often with very good results. With these modern meds, the prognosis now is so much better than it used to be.

Glad to meet you,

Aloha,

Georgina

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

From: amyannk

Hello;I posted a message a while back and I am not sure that I did it right.First I am a Mom of two children one is 19, : he was diagnosed in 1983 with systemic JRA with a ?autoimmune disorder. He was on prednisone daily for three 1/2 years, colchizine, and 12 adult asprin a day. He now shows signs of joint calcification and has dificulty still with fever if he get's tired. He maintains his diet and excersice regimen and is only on asperin at this time.They had told me the likely chance of another child having JRA would be rare. My daughter Lacy, 15y/0 was diagnosed with Polyarticular JRA and raynaud's syndrome this spring. We have tried many types of therapy and even prednisone; none seem to be decreasing the flare ups or the sed rate. Her last sed rate was 30 on 3mg. of predisone and naproxin 375mg. She is ready to do anything if it will decrease the pain and increase her ability to do everything she would like to do. Please do you have any ideas to help me help her. It seems that we should have so much better treatment now. Thanks;amyannk