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newly diagnosed with Lupus

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Posted 5/20/2008 3:56 AM (GMT 0)
sad  Hi, I just joined this site and chat group. My daughter was dx with Lupus of the skin, and also has symptoms of lupus in her body, but blood test is normal. She is 30 yrs. old.

Anyway she also has fibromyalega, which makes this harder. She is having a very had time now staying awake, wants to sleep a lot. And falls asleep very easy. It is all she can do to stay awake. It is to the point that she isn't going out much or driving, because she is afraid she will fall a sleep. Is this a part of Lupus? or should she take a closer look at her medications ?

What type of meds do most people take for the symptoms of Lupus? Also she was told by her Rhumy to stay out of the sun, use netragenia sunscreen. Any comments about this? Please help me to understand Lupus.

Posted 5/20/2008 4:14 AM (GMT 0)
Hello,

I have been dealing with Lupus for a couple of years now, and the exhaustion can be part of the Lupus or the Fibromyalgia.
I usually feel exhausted like that during a "flare". A flare can be triggered by too much sun or basically just too much of anything.

The right medications help but many take some time to kick in. I am on Plaquinil (sp?) and it took over 6 months to kick in but seems to be working for me now. I had to take some blood pressure meds too as my blood pressure increased with some of the other meds I take and they made me very, very tired. Not sure if your daughter is on any pressure meds but wanted to toss that out there too.

If she is knew to auto immune disorders then it may just take time to find out what works for her in the way of meds.

Ti
Posted 5/20/2008 12:55 PM (GMT 0)
Thank you so much for your reply. She is on Placquinel (sp) and other meds for her fibro. She say's that she is in a flare and the doctor tells her that this is what is making her so sleepy?

grammy04

Posted 5/20/2008 1:52 PM (GMT 0)
Hi Grammy . . . Plaquenel is usually the first med used for skin or joint issues in Lupus. It is a med that most of stay on indefinitely. Sometimes the rheumy will start with a low dose (200 mg) and then build as needed. Most of us are on about 400 mg/day. This med can take several months to build in the system and really make a difference. She should let her Rheumy know if the meds aren't controlling her symptoms. There is a topic titled "Taking a Show" which talks about being so tired. There are a couple links in that topic that might help you understand that extreme tiredness too. It would be great if daughter joined us . . . Lupus is a huge topic and understanding the ins and outs can be very beneficial as far as self-help goes. Some good links at the end of my signature too. Blessings!
Posted 5/21/2008 4:54 AM (GMT 0)

Thanks again to all that answered my questions.

grammy

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