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"Mild" lupus and life thereafter

2496 Views 10 Replies 11 Participants Last post by  Chaika
I want to hear the experiences of those on this site and see what you all think. I have read medical literature, although I have not yet found journal articles that deal specifically with this issue.

I know that many on this board have SLE, or have family/loved ones with SLE. My significant other has lupus, and was diagnosed in her early 20s about 4-5 years ago. She has "very mild" lupus, with her manifestations being primarily joint pain in the hands, occasional malar rashes, and pleuritic pain that comes on a few times a year. She only takes Plaquenil and Voltaren, although she was off of the Voltaren for some time but is going back on since she has some pleuritic pain lately. She was on steroids for a while when she first was diagnosed, but hasn't taken them since except for a short taper once or twice for pleuritic pain. She has never tested positive for dsDNA, from what I know she is only ANA positive with one time where they said she had anti-phospholipid antibodies. She hasn't had them since. She is very active, works, and for all intents and purposes leads a very normal life. She has her fatigue, which I notice, but it doesn't really affect her day to day activities. She has seen some very good/prominent rheumatologists (and lupus specialists) and is very good with her medical care.

What I'm wondering is this: How many of you started out like this or are like this currently? I know that things can change at any time, but do people with lupus ever live their whole lives with such a "mild" form of lupus, or does it usually progress from this point? She says that she has been told that she should be able to have children without difficulty (other than high risk monitoring), and otherwise live a normal life. But she is such an optimist, I sometimes wonder if she just tells me the good and leaves out the bad.

For instance, I know she has never had kidney issues, and she is not dsDNA positive, but does this ever just pop up later in life after not having problems with it early on? Or does the fatigue usually gradually progress and get worse later in life, or can it stay mild as well? I have been reading around and I know that the symptoms can vary greatly, it just seems that there are not many articles out there that deal with quality of life and prognosis in that respect.

I just want to know if it is ever really "mild" or if it just seems that way at times.

Sorry for the vague questions, just looking for more answers, and would appreciate anything those on this board have to offer. Thanks.
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I think I would probably qualify as having mild lupus now. I was diagnosed in 2002 and had kidney involvement. I didn't get kidney damage, probably because the consultant I was seeing didn't hang about and started me on medication straight away. Apart from swelling due to some kidney inflammation and the rash (which went away immediately upon starting treatment) I had no other symptoms. I was taken off all medication in January and continue to come in for regular blood tests (every 3 months or so).
I feel perfectly normal and I exercise regularly and have a physically demanding job outside, so no fatigue or symptoms whatsoever really. Do have to wear lots of suncream while outside and need to avoid vaccinations unless really necessary but this is 'just in case' rather than because these things cause symptoms. The consultant isn't really expecting things to get very much worse from here and most of my SLE grumbles have so far manifested themselves during serious infections (appendicitis, and a very bad chest infection+flu) and then only as a small blotchy rash without any other accompanying symptoms.

Hope this helps and hope that your 'significant other' keeps going strong!
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