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I sometimes wonder if my daughter has lupus

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Old 02-09-2006, 02:42 PM   #1
Join Date: Feb 2006
Location: Mt.Perry Ohio
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chick4457 HB User
Question I sometimes wonder if my daughter has lupus

I just found this site and I was just wondering if I could get some opinions on whether my daughter could have lupus..My daughter is 16 and has been sick off and on for 2 years now..She is currently suffering with chronic chest pain that shoots into her abdominal area It is worse when she breathes.. She says it feels like something is popping.. She also has erythromelalgia which can be secondary to lupus..She has had several test Ana and others and everything comes back normal.. Currently she has hair loss, mouth sores, chest pain and in the summer she gets a rash on her arms and legs when out in the sun.. Just wondering what everyones thoughts are. She is currently out of school She has been unable to attend since December 10th of 2005

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Old 02-09-2006, 05:12 PM   #2
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jennyback HB User
Re: I sometimes wonder if my daughter has lupus

Has she seen a doctor Lupus is hard to diagnose especially in children . They sent my son to a pediatric rheumatologist the test is different from an adults. I hope she doent have it since it tends to be rougher on children. I have mouth sores chest pain and hair loss with my sle. Get her to a specialist and I hope its not lupus my prayers are with you

Old 02-09-2006, 05:18 PM   #3
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VeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB User
Re: I sometimes wonder if my daughter has lupus

Dear chick4457, From the Board here, you can find some excellent info on lupus. See (1) the "Resources" tab above. From it, go into MedLine Plus, then rheumatology, then lupus. (2) Look at the "sticky posts" at the front of the Board. In the one about test results, there's a source mentioned that has a great deal of info, including various lupus rashes.

I guess the main things I want to leave you with here, just starting off, are

(1) There are different kinds of lupus. Systemic lupus (SLE) is the "big lupus", but there are also lesser "subsets". Discoid (DLE) is the lightest one; scarring rashes are its hallmark. Subacute cutaneous (SCLE) is the intermediate one, with rashes (either annular = circular, or psoriasiform = looks like psoriasis but isn't. In SCLE, true systemic problems can occur that may or may not include organ involvement; but some cases are mild (rash & fatigue, for example).

(2) ANA is only a threshold test, and results may vary from test to test. Most people (not all) with SLE have at some point(s) a positive ANA. But the *subsets* are different! In DLE, maybe only 50% (or so) ever test positive. In SCLE, maybe only 70% (or so) ever test positive. Therefore ANA may not be all that needs to be looked at. Many dermies & rheumies order the ANA but *also* all sorts of other more specific autoantibody & complement tests.

(3) If someone has a recurrent rash, a skin biopsy can be very useful because lupus rashes have distinct characteristics.

I had episodic problems from early childhood. By my 20's, I had chronic, severe IBS. Then each year, more stuff: fatigue, migraines, stones, anemia, joint pain, urinary problems, neuro-like tingling, rapid heartbeat, etc. It wasn't until my late 30's that I got an early form of the SCLE annular (circular) rash, on my arms & back. For 4 years it looked like mosquito bites; but after that, when it reappeared, those welts "morphed" into circles. Didn't itch and didn't scar; and it was clearly photosensitive. (I looked like the Tatooed Lady from the circus. )

I finally grew so miserable with local drs. that I took myself to a teaching hosp. rheumie in Manhattan. On his very first try, I tested positive for anti-Ro. But, interestingly, I have NEVER tested positive for ANA---which is why I wrote that caution about ANA.

Has your daughter seen a rheumie? A dermie? What does your daughter's rash look like? Does it itch? Scar? (etc.)

Anyway, you can read better explanations in the materials I suggested. Why don't you read a bit, then fire back more questions & comments? People here always have plenty to chip in, it seems, and are always ready & willing to chat. Sincerely, Vee

Old 02-09-2006, 08:07 PM   #4
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BarbaraH HB UserBarbaraH HB UserBarbaraH HB UserBarbaraH HB User
Re: I sometimes wonder if my daughter has lupus

Hi -

Sorry your daughter is having such annoying and debilitating problems. You've already been given good advise, but I'll add a bit from my experience. At the top of this thread is a sticky about lupus diagnosis and it's helpful.

I, too, suggest she see a rheumatologist who has lots of lupus patients (not all do) and the doctor's office can tell you if a pedi rheumatologist would still be best since your daughter is 16.

Is your daughter taking Celebrex by any chance? Besides fatigue, my 1st symptom were 2 spots on my forearms that didn't itch, but had raised and reddened edges. I also had a foot injury, so went to a doctor. He had no idea why I had the spots, but prescribed Celebrex for the aches. Within days, I had so many spots (still no itch) that from my fingers to my elbows, it looked like I had leprosy, had incredible joint pains, and I couldn't stand up for more than 20 minutes because it hurt too much. Long story short, it turned out I was allergic to the Celebrex when up until then I'd had no allergies. Doctor #3 did an ANA; doctor #4 was a rheumie who deduced my allergy problem. Once I was off the Celebrex, all the spots went away, as did most of the pain and I could again stand without problems. I have "probable lupus" and it is common for people with lupus to become allergic to sulfa. Celebrex has a sulfonamide in its chemical makeup. So, if your daughter is taking Celebrex, it could be making things worse for her, too.

Yes, the sun makes all the aches and fatigue much worse. I've avoided being in the sun without SPF45 sunscreen, a big hat, long sleeves, and jeans. Not exactly the 1st wardrobe choice for a 16 year old, but I hope you'll encourage your daughter to give it a try and see if she feels better.

Wishing you both well - Barbara

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