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Hi Kangelle,

So sorry your young daughter has this to deal with and hope you can find the resources you need. You must be beside yourself with worry. The last 40+ years have brought wonderful treatments and hope for those if us with lupus.

Vee's post is really wonderfully informative, so hope it helps.

Do I remember reading you're in TX? I cannot see that information now that I'm writing, so hope my memory is correct. We lived in Waco when I was diagnosed and a rheumatologist was the most helpful of the 4 doctors I saw when having the first bizarre symptoms. That wonderful rheumie told me I could go from house to car and car to work, to a picnic away from water on a cloudy day if there was deep shade, and never to plan a day at pool or beach. He said to use sunscreen SPF 45 or higher. Bummer for a 12 year old, but she could swim in the early morning, late afternoon, and evening.... For some reason, the sun makes the worst lupus symptoms worse: fatigue, joint pain, and rash - and it can take months to get over the "flare" (as it's called when the symptoms get worse for a while).

I'll add that many lupus patients become allergic to sulfa and that's found in the medicine Celebrex and in other meds. I know, because I went from no allergies to suddenly allergic to sulfa. The 1st doctor I saw put me on Celebrex and my joints swelled up and were very painful, I could stand up only for 20 minutes before I'd have to sit with my legs elevated on a tall footstool, and the rash I had on my forearms (one spot on each) multiplied until it was from fingers to elbows. My brilliant rheumie (doctor #4) deduced that I was allergic to Celebrex! Within days of being off Celebrex, the rash was gone, the joint pain was gone, and the swelling was gone. I've been on Naprosyn ever since without complications. I do take care to have food in my stomach before every Naprosyn dose.

Since my diagnosis in 1999, I've bought Dr. Daniel Wallace's The Lupus Book twice so I could have the new edition. I highly recommend it.

Please come back with any question you have. We're experts only in that we have lupus and have some information and hope to share.

Wishing you daughter well and sending hugs to both of you - Barbara :)





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