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So Confused

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Old 09-13-2007, 12:09 AM   #1
Join Date: Aug 2006
Location: Pontotoc, MS, USA
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So Confused

Can someone please help me. I was diagnosed with SLE in 1998. I have taken plaquenil and anti-inflammatories since then, but still have joint pain, stiffness and fatigue constantly. I was also diagnosed with Fibromyalgia about 3 years ago. I switched Rheumies about a year ago because it cut 80 miles one way off my doctors visits. But since going to the new doctor, they have told me I now have non-active Lupus and my ANA tests have been negative. Has anyone ever heard of this? And if my tests are reading negative, why do I still have the symptoms?

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Old 09-13-2007, 02:01 AM   #2
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Re: So Confused

Taytay, I've been on Plaquenil for some years & have better test results but STILL feel the way you describe. I was basically reduced to a "chronic mild", I think. Which is good, I guess, considering that I've lost all my problems except these... but still tiresome...

I asked my rheumie once if I'd be on Plaquenil all my life. Answer: YES. He seemed a bit miffed that I'd even ask. Inflammation itself can cause fatigue, so maybe you could ask your new dr. if you need to take something more to control it? e.g., an OTC NSAID, maybe? Best wishes, from Vee

Old 09-18-2007, 01:19 PM   #3
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Re: So Confused

Hi -

I was diagnosed with mild lupus in the mid 80's in my mid twenties. Yes, you can still have symptoms with a negative ANA. The fibro pain and sleep disruption presented about 1 year after the SLE diagnosis. Over the past 20 something years my ANA's have come back positive and negative, with or without symptoms. The plaquenil controls the majority of the SLE symptoms but they come and go. I believe that the longer you have it the more you know your illness and learn to manage it with sleep, meds, & diet. For instance if I eat alot of sugar I will feel it for a week, mouth sores, leg heaviness, fatigue etc... If I do not rest or I try to play to hard, then it will remind me to slow down. Over time I have become used to it and just listen to my body. Be grateful that it is mild, my lupus is mild and has remained the same for over twenty years, even through a tough pregnancy and child birth. Hope this helps! Good luck,


Old 09-18-2007, 07:40 PM   #4
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Re: So Confused

I too have had positive and negative tests and also have joint pain, stiffness and fatigue. I also have fibromyalgia and have been taking meds for many years to control it. Like sherri said, diet, sleep, exercise and just listening to my body helps me keep going.


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