e

November 8, 2006

I saw in your post to Beth about the cost of Remicade you must live in

WA? I do too and was wondering where and where your child is

treated. I am pretty new here too this board and honestly not very

consistant. We live in the Edmonds area and go to Children's.

Hope your enjoying the Sunshine today!

Theresa

November 9, 2006

Hi Theresa,

Yes, we live in Western WA too. You are on my list of people to email but we

have so much water in the yard that our internet/phone keep going down. Yippee

for a few rays of sunshine, although all the extra rain has not helped any.

Yikes! I feel so bad for all who have lost their homes. If we ever move around

here I am going to research flood plains. And those poor hunters who got

stranded when the river wiped out the roads. I heard they may never see their

trucks and gear again. Oh my! Okay, enough of the weather..

We went to Childrens from 2001 to 2005. Then they said that we would have to

transfer to an adult rheumy because she was 18. At first I was irritated that

they just blew us off like that. We were left high and dry because we couldn't

get in to the new rheumy until Christmas and this was summer so there was no one

managing her care. I had the doctor's pager and would call him to put out fires.

It was a mess. But then we went to the adult rheumy and we love her. I told my

daughter if she wasn't comfortable we could keep on looking for another doctor

and the doctor told her the same. Well, we are staying for life! It is wonderful

not having to wait in the waiting room for hours and then sit in the cold room

for more. And not to see so many doctors who keep changing the treatment plan on

us. Each time we would see someone else, even though we had a regular doctor and

they would change the plan, especially if it was an urgent problem. They even

started reducing her meds

because her labs looked good, even though she would tell them that she couldn't

walk for more than 10 minutes at a time, couldn't go to the mall with her

friends, had to sit in the handicap area in the theatre because of her legs, etc

etc We actually just starting moving meds on our own to help her to be at her

best. We started Enbrel as an experimental thing. The only way we got it was

through the study. They kept telling us that it was a wonder drug and would work

quickly. She never did great on the drug. She even took it 3x a week and it made

things worse. They always talked about moving her to the enxt step-another TNF,

but never did.

We went to the new rheumy and she tried some different things. She also found

that my daughter's thryoid is not working properly and is monitoring it (they

never checked). She did testing for lupus and she is positive. This can make a

difference in treatment. We tend not to call much because we just manage it

ourselves, so when we got to clinic and told her she had been using a wheelchair

she told us we should have called (my daughter didn't want to go on high doses

of pred again) and she switched her from Enbrel to Remicade. She has had 2 doses

so far and we go to the clinic tomorrow for an appt and 3rd infusion. It is nice

not waiting long periods of time for either the doctor or the lab. It is a pain

getting ther and parking is horribly expensive (when we go to the infusion

clinic parking is free) but otherwise I have little to complain of. We are

going to Virginia Mason in downtown Seattle and my daughter is very happy with

her.

e, mom to joe 19 poly + lupus

tj2girls2 <tj2girls@...> wrote:

I saw in your post to Beth about the cost of Remicade you must live in

WA? I do too and was wondering where and where your child is

treated. I am pretty new here too this board and honestly not very

consistant. We live in the Edmonds area and go to Children's.

Hope your enjoying the Sunshine today!

Theresa

---------------------------------

Everyone is raving about the all-new beta.

January 22, 2007

Hi Teri,

Sorry I am slow. I am sick with the creepy crud as we call it and been

spending most of my time in bed but I needed some time up so here I am. lol She

was diagnosed after the JRA diagnosis. We used to go to Seattle Childrens but

when she aged out of there we went to a new adult doctor. Her new doctor

reviewed her records and her labs, symptoms, meds tried etc. She also wanted

more lab work done based on physical exam, questions, and her partial response

to meds such as Enbrel. The specific labs are Complements 3 and 4, I think. I

would have to find her labs. They are positive with only lupus from what I

understand and hers are positive. How does is affect her? Well, she has the

symptoms of JRA plus extreme fatigue and erratic response to medications. We did

try the Plaquenil which is supposed to be good for Lupus but she broke out in a

weird rash, lost hair etc so we stopped that one. Since the symptoms have always

been together I don't know for sure what is different.

She has the swollen joints, chronic pain, currently not anemic with current

meds but has horrible problems in the past, high rate of infections but could be

related to meds. Um, I also am " fuzzy headed " (great line from You've Got Mail)

tonight so not sure what else. Ask away and I will try to answer or ask my

daughter for you.

Why are they suspecting Lupus? Are they considering this with the JRA

diagnosis or just the Lupus? From what I read it is rare before 15 but then it

is very common in women so I'm thinking that is because of hormone levels and

girls today have very early cycles.

e, mom to joe 20 poly + lupus

branx4 <branx4@...> wrote:

Hi ,

I have a question for you ... how was Joe dx with Lupus ? was it

before the arthrits dx or after and lastly, how does it affect her

daily life ? The Dr seems to think that Belle is showing some classic

Lupus signs .

Teri ( Belle 12 )

---------------------------------

Don't be flakey. Get for Mobile and

always stay connected to friends.

January 22, 2007

Oh e ,

I hope your feeling better, don't worry about the fuzzy head ( I have

that most of the time) . We went to Children's on Wed and her Dr

worries that she is showing some signs of Lupus ( she has always

been ANA - , so Im thinking this screening will be negative also but

DR T. is very cautious) . The only problem is that Belle feels awful

but he doesn't want to change her meds until AFTER the results come

back later this week ... I hate the waiting . In the mean time Belle

still feels awful , no energy and lots of pain so we are just taking

it one day / hour at a time. We have changed her bed time and are

limiting her time away from home on weekends to try and combat the

fatigue but its not really doing any good. I just HATE this !!!!! I

hate seeing my daughters life be so different , so limited . This

wasn't always the case , gosh she climbed a mountain this past

summer ... now she cant even get to school on time most mornings

anymore ~ in fact she's in bed now and its after 8:00 AM , school

will wait. Sorry about complaining so much , thanks for the info. How

is Joe doing?

Teri

> Hi ,

> I have a question for you ... how was Joe dx with Lupus ? was it

> before the arthrits dx or after and lastly, how does it affect her

> daily life ? The Dr seems to think that Belle is showing some

classic

> Lupus signs .

> Teri ( Belle 12 )

>

> ---------------------------------

> Don't be flakey. Get for Mobile and

> always stay connected to friends.

>

January 22, 2007