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Question ~ Lupus

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At my last visit to my physician I was told that I have Lupus as well as

Psoriatic Arthritis ... is this part of the disease? Or is this something

totally

different? I am having labs done again this week ... before they start me on

Enbrel. I know I should have asked my physician but I was a bit overwhelmed by

it all and I had a list of things to go over just about PA. The Lupus addition

caught me off guard.

~ Jenn ~

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My daughter is sixteen and was diagnosed with PA at twelve. Her labs would

appear that she has Lupus but her Rhuematologist believes that it is the PA

causing the results and not actually Lupus. He is very cautious about

medications that can cause drug induced Lupus because the Lupus my not go away

in

someone like her after stopping the drug. He did start her on Enbrel exactly

one

year ago and she has done great.

[Editor's Note: While there are no tests that will diagnose PA, there are tests

to determine a diagnosis of Systemic Lupus Erythematosus (SLE): First, an

anitnuclear antibody test will suggest likelihood of autoimmune disease (but not

specifically SLE). A positive result could warrant further tests: A positive

test for autoantibodies to double-strand DNA and to antigen will reveal

SLE (or DLE--Discoid Lupus); a biopsy of non-SLE rash, sun-exposed skin showing

immune complex deposition will powerfully if not definitively suggest SLE. Why

is the Rheumatologist in this case going with " belief " rather than the testing,

perhaps you know--I can't guess. You mention labs; were the above tests done?

What medication(s) that might " cause " SLE is the doc concerned with?

Lastly: If she is doing well, and the doc is being cautious, it sounds like

things are going well; my questions are more academic than clinical--except

that, as Fran and others point out, SLE can be very serious, and it may well be

useful to know whether your daughter has SLE, or " just " (Hah!) PA.

D.]

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Dear Jenn, I'm not a doctor, but I know Lupus is a very different disease.

One form is very mild and most people do quite well, some even without

medication and they simply avoid the sun to do skin rashes. One of my

friends has a mild form and you and I would never in a million years think

she was even sick. Yet I know other people who have the serious form, so it

's important that your doctor give you more information on which type you

have and how to treat it. It might also help explain your sense of

fatigue you have been experiencing, if I remember your previous emails.

It's never good news to hear we have something else wrong, but try and look

at it if it is something they can fix, you might feel better. That's how I'

ve tried to look at all my new diagnoses that have popped up over the years.

I'm really surprised, actually I'm not but we all should be, that your

doctor didn't go over Lupus with you and tell you what all this means. Boy

doctors can sure be annoying at times.

Good luck and let me know how you are doing. Take care, Fran in Florida

riginal Message-----

From: JENN13577@... [mailto:JENN13577@...]

Sent: Saturday, May 15, 2004 9:57 AM

Subject: [ ] Question ~ Lupus

At my last visit to my physician I was told that I have Lupus as well as

Psoriatic Arthritis ... is this part of the disease? Or is this something

totally

different? I am having labs done again this week ... before they start me on

Enbrel. I know I should have asked my physician but I was a bit overwhelmed

by

it all and I had a list of things to go over just about PA. The Lupus

addition

caught me off guard.

~ Jenn ~

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Hi Jenn,

I don't have lupus, and hope to never have it. There is a lady that

lives in New York who has lupus and she has done a lot for lupus

awareness. You might be interested in looking at her site. She

speaks of the Spoon theory, which can help our families and friends

understand what it is to be chronically ill, not just with lupus but

any other chronic illness out there. Ex. PA. Her website is:

www.butyoudontlooksick.com

It was very informative to me, after having pa for years and my

family and friends not understanding why i felt so tired all the

time and never felt up to " going out " . Just wanted to give you some

info on that site. Good luck in your journey.

Keli

> At my last visit to my physician I was told that I have Lupus as

well as

> Psoriatic Arthritis ... is this part of the disease? Or is this

something totally

> different? I am having labs done again this week ... before they

start me on

> Enbrel. I know I should have asked my physician but I was a bit

overwhelmed by

> it all and I had a list of things to go over just about PA. The

Lupus addition

> caught me off guard.

>

> ~ Jenn ~

>

>

>

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