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Old 05-21-2007, 05:26 PM   #1
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Hopefully someone remembers me

I had posted in the past about my daughter she has alot of the lupus symptoms including a very prominent malar rash. She had an ana done last aug. 2006 and it was 1:80. She just had it redone now and it is 1:640
Could she have lupus?
thanks for any insight
c

 
Old 05-21-2007, 07:18 PM   #2
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Re: Hopefully someone remembers me

Hi -

I've only been here intermittantly, so will only say that my 1st ANA was 1:40 and my rheumy said anything over 1:39 was diagnostic for lupus, given the other symptoms I had. If you look at one of the stickies at the top of this thread, it lists the 11 classic symptoms of lupus. If you have 4 or more, you may well have lupus. My 4 were fatigue, joint pain, elevated ANA, and mouth sores (timy, non-painful and found by my dentist). 6 weeks after my initial ANA, it was repeated and was 1:600 or 1:800, I've forgotten which. I'd say it's very possible your daughter has lupus, but I'm not a doctor.

I'd suggest your daughter stay out of the sunshine from 10am until 4pm; wear 45spf+ sunscreen; dress in long sleeves, jeans, and a hat with a brim; and see if the rash goes away and if she feels better. Sunshine made my aches, rash, and fatigue much, much worse. It's no fun, but being out of the sunshine really helped.

Wishing you both well - Barbara
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Old 05-22-2007, 08:23 PM   #3
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Re: Hopefully someone remembers me

As far as staying out of the sun, which is very good advice, I also have problems with Florescent lighting. If I am shopping in a mall or a large store like Home Depot or Lowes....all those florescent lights give me blurred vision and brings out the heaviness in my limbs and pain....fibromyalgia or whatever it is that causes those symptoms. I don't know about anyone else but I can't tell anymore what is from FS, Lupus, Neuropathy, etc. All I know is I feel pain, burning, heaviness in my limbs, i get emotional for no reason, I get IBS, blurred vision, acid reflux....so many things that who can tell what causes them?

Connie

 
Old 05-23-2007, 07:17 AM   #4
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Re: Hopefully someone remembers me

That must be awful. My 3 yr old can't really tell me alot in explaining yet because her speach i8s behind. But she has complained that her legs hurt,feet hurt and ver fatigued lately and wants to be carried alot. It is strange for a 3 yr old or even her a few months ago. She sleeps alot she takes a 3-4 hr nap a day.Most of my friends children do not take naps at that age. The other day I put her down for a nap at 3pm and she didn't wake up until 6:30am the next morning. I tried getting her up but she was just very tired. Her facial rash seems to be more prominent this year than last. She even has it when it is cold out but more so in the sun. I sunblock her with 50 all the time even a couple times a day. She doesn't like hats but I am going to try to get her to wear one more.
Thanks

 
Old 05-23-2007, 07:21 AM   #5
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Re: Hopefully someone remembers me

Quote:
Originally Posted by BarbaraH View Post
Hi -

I've only been here intermittantly, so will only say that my 1st ANA was 1:40 and my rheumy said anything over 1:39 was diagnostic for lupus, given the other symptoms I had. If you look at one of the stickies at the top of this thread, it lists the 11 classic symptoms of lupus. If you have 4 or more, you may well have lupus. My 4 were fatigue, joint pain, elevated ANA, and mouth sores (timy, non-painful and found by my dentist). 6 weeks after my initial ANA, it was repeated and was 1:600 or 1:800, I've forgotten which. I'd say it's very possible your daughter has lupus, but I'm not a doctor.

I'd suggest your daughter stay out of the sunshine from 10am until 4pm; wear 45spf+ sunscreen; dress in long sleeves, jeans, and a hat with a brim; and see if the rash goes away and if she feels better. Sunshine made my aches, rash, and fatigue much, much worse. It's no fun, but being out of the sunshine really helped.

Wishing you both well - Barbara
As for her symptoms she has:
positive ANA
Joint pain,occassional swelling
mouth sores
hair loss(not as much as before)
malar rash(intensifies with light)
Fatigue
temp everyday but not all the time of at least 99-100
C

 
Old 05-24-2007, 04:08 AM   #6
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Re: Hopefully someone remembers me

The said she thinks it is very unlikely that she has lupus but to follow up in 3 months and repeat the blood work. That makes me feel better. Thanks for all the great help.
Thanks

 
Old 05-24-2007, 04:34 AM   #7
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Re: Hopefully someone remembers me

Hi, Claflamme, I also think that your daughter should wear HATS---not that most of us want to... I didn't know until it was gently [ahem!] pointed out by my rheumatologist that in lupus, rashes "cross subsets". For someone like me, with SCLE, this means I'm also "eligible" for malar & discoid rashes. Discoid lesions on the scalp can cause permanent hair loss.

I know your daughter has not been Dx'ed with lupus---but we should all protect our skin, eyes, hair, etc. from sun from childhood onwards. I wish I'd done so... Anyway, good luck with her 3-month check-up & in the meantime, too, of course! Warm wishes to you both, Vee

 
Old 05-24-2007, 10:52 AM   #8
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Re: Hopefully someone remembers me

Thanks. That permanetnt hair loss is alarming. Ia m going to push her to wear a hat.
Thanks

 
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