Re: [JRA]/ / Systemic Rash

[Guest guest]

Hi ,

I haven't yet had a chance to really say hello, aside from with my

introductory welcome letter and that one short message. It's been so

busy around here. Today, though, I've finally got some time to sit and

read through the recent postings. I wanted to let you know that I can

really empathize with your situation. I feel very fortunate. My son was

only sick for about a month before doctors agreed on the diagnosis of

systemic JRA. It seemed like forever at the time but, in retrospect, I

realize just how lucky we were. I've read so many letters from other

parents over the years and when they describe being in that agonizing

stage of not knowing exactly just what is wrong, my heart goes out to them.

My son's symptoms started very suddenly (he seemed absolutely fine until

that fateful day) and were very puzzling (at least to me, who knew

nothing at all about juvenile arthritis) but it turns out that he had

all the classic symptoms of Stills Disease. Not everybody fits so neatly

into the textbook descriptions though, complicating matters.

My son hasn't had the rash at all in the past 6 months and it lasted for

just two days the last time. For the first several years, though, he

used to have it almost daily. A few hours in the morning and then again

in the evening. His was never itchy. It always appeared only on his

upper thighs, upper arms, and chest ... just a couple times on

his back, too. Splotchy patterns, sort of like the markings you might

see on a cow. Light pink in color. If we scratched a fingernail in the

area of the rash, it would soon appear along the place we'd scratched.

Josh used to amaze his friends with that little trick.

I can't believe your daughter was hiding her pills! You said she was 8

.... or 18? No wonder she didn't have an optimum response! As far as

prednisone goes, it usually works very quickly and the improvement is

dramatic (in most cases, anyway). I guess you'll be sure to have a talk

with Aundrea about the importance of taking her meds regularly. With

some of them, you need to build up a certain level in the bloodstream

before they'll be effective. Most times, people think: if you feel pain,

you take something. With a chronic illness like arthritis you often have

to take the medicine regularly in an attempt to prevent the pain (and

other symptoms).

Well, , be sure to keep us updated on how things are. I hope today

is a good day.

Take Care,

Georgina

sonia dykhuizen wrote:

> Hi Becki,

> Thanks for letting me ramble!:-) As far as Aundreas rash goes its

very easy

> to see it move around. Today for example when I picked her up from

school

> she had the red rash around the corner and under her left eye. An hour

> later

> it was on her right cheek and also on her neck. A couple hours later it

> was

> gone. I should have said that it was her pedeatrition that

mentioned the

> trial use of methotrexate not the ped. rheumatologist.

> The other thing that her rheumies puzzled was her failed response to

> the prednisone and my mistake it not making it clear that pain only

> started to return after the taper. I just said that it wasn't effective

> and they

> didn't probe any further in their questions. Well, today I was cleaing

> house

> and found about 8 more pred pills that Aundrea had hid. She had some

> good hiding places. Up on a ledge, behind the table leg in the

kitchen and

> behind the refrig. I had discovered a few that she had hid under the

table

> cloth right away and when I questioned her on that she started

crying and

> said the pills were making her sick (headaches, nausea, dizziness)

so she

> didn't want to take them anymore. I didn't think to ask her if she

had hid

> more than the ones that I found. So, no wonder we had very minimal

> response to the pred. I guess I will need to fill her rheumies in on my

> pill discovery!

> It still seems to strange to me that they aren't putting her on a

DMARD by

> now. I know that they have only seen her once but she has had problems

> since last Sept. And, I just don't think that the severity of her rash

> during

> a flare should be that significant to cause a problem in diagnosing.

I feel

> like if I take her to another rheumy I will have to start all over

AGAIN.

> Besides, I took her to the immunology/rheumatology department at

> Chicago Childrens Hosp and they have a great reputation. Maybe, I am

> just not giving this enough time along with the fact that my 8 year

old was

> hiding her drugs, probably doesn't help anything.

> I plan to call the rheumy back next week if the sorethroats and evening

> joint

> pains persist. I have also taken more pictures of the fleeting rash so

> maybe

> that will help.

> Thanks,

>

>

> Arthurnator@... wrote:

>

> ,

> You are talking to the queen of ramble,so don't apolagize and never

> apolagize for venting.That is what we are all here for and have done

> it many many times.'s rash was never textbook,except for the

> fact that it moved around.Have you ever circled one of Aundrea's

> spots and seen if it had moved around an hour later?That is the one

> key thing that differentiates systemic rash from others.

> Your ped like most needs a class in DMARD therapy 101.There is no

> such thing as a short trial of Methotrexate or Plaquenil.These are

> very slow acting drugs.The MTX can take 3 months or more to kick in

> and the Plaquenil up to 6 months.Thats were the pred comes in.It

> acts as a bridge until the other drugs take effect.Educate

> yourself(this list is a great place to start)then you can play a

> bigger role in treatment and it becomes much less confusing.A word

> on pred.Pred tapers will be one of the hardest things you ever go

> through.While it is a wonderous drugs it has it's unwanted side

> effects and the doc's will try and taper it as quickly as

> possible.Unfortunately many times your child just can't tolerate it

> and flares,but it's the only way to find out if the DMARDS are

working.

> Ask away with any questions you may have.

> Hugs

> Becki and 5 systemic