Hi. I'm new to the board. I've had SLE since the mid-90's, and after much illness, trauma, and treatement followed by 4 years of doing (literally) nothing, I ended up in "remission" last October (07). My bloodwork was normal, SED rate normal, etc. And there was much rejoicing.

Since then I've been a bit more active (well, a lot more, really), and I have started experiencing symptoms again, and wonder if anyone else has been in remission, then lost it, and if so, what happened first...any info would be great.

So far my first symptoms of note are elevated temp (between 99.2 and 100) pretty much every night with the intense feeling of burning up that I used to have every night, all night. Has anyone else experience this? not like menopause hot flashes (I've seen them, read about them, and am too young anyway), but the constant sensation of being hot, hot, hot, throwing off the covers, waking with heart racing and feeling scared, then a cool-down to coldness, followed by falling back asleep, starting over once the covers (even just light ones) make me burn up again. For years I didn't sleep through a single night. Now this has started again, though my temp is only just above 99.2. Please share if this happens to you.

Other symptoms are pain and stiffness in my joints: hands, feet (with their many, many joints that hurt beyond bearing), and hips especially. Red and stinging skin when exposed to sun, with itching, too. A return of Candida after a site-specific Cortisone shot in my back, inflammatory headaches, inflamed lungs/lung girdle which cause breathing difficulties, and extreme need for sleep (which the burns aren't helping any). And my face is getting very, very pink (not yet red) in the usual butterfly pattern.

And during my remission months, I got gastro-enteritis and 2 bouts of Influenza A, which certainly was not fair!! Remission should mean a return to health, yes? Not new illnesses. I never got flu in my life, but my doc says not surprised, as my immune system is so compromised, one way or the other.

I'm on Plaquenil and have no thyroid function, so Levoxyl. I think I need to do some time on Prednisone, though, now that I seem to be getting sick again.


I haven't gone in yet for new blood work, but I'm sure my SED rate is up again. Mostly I want to know if others experience the burns. They're so disruptive and exhausting. If so, what helps?

Thank you.