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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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hi there

just thought i would also add my two penneth worth. This is something i have asked my rhuematologist about as i too have been diagnosed with "mild " symptoms. I was told that generally (although as previously said there is always exceptions to the rules) the more serious organ involvement generally happens in the first few years and if that doesnt happen is less likely to happen. I too get bad joint pains, severe raynauds, numbness, swollen glands and tiredness but do manage to look after my active 18 month old son. I have been told by my rhuematologist that i can have more children and that i can take plaquinil whilst pregnant ( i probably wouldnt choose to breastfeed next time because of the passing through breast milk) but would need to be referred to the high risk gynae to keep an eye on things though. It is a concern with a illness as unpredictable as lupus whether or not things could get worse but i also go through good and bad patches. There are days when i feel really good and seem to not have much pain and then days when i struggle. I try and take it easy when i feel my body is telling me to slow down which seems to help things pass a bit more quickly. Hope this helps

annie x
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