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"Mild" lupus and life thereafter

2494 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 can only tell you how my sle has been with me. I was dx when I was 22 years old and for the most part started with being in the sun and the rash. I was only taking plaquenil and doing the labs twice a year. It went on like this for a few years and then I lost my health care coverage for 2 or 3 years. I was unable to get meds or see the doctor. I finally got back on health coverage again started my meds and treatment again. I did notice a difference that it had gotten worse.

While I was off health care I developed more problems like sleep apnea, ra, bone spurs in my knees, and fatigue has increased a lot. I did go back on the plaquenil and was told that I had sle what did I think was going to happen. Then yet again I lost my health coverage again. I was off all meds and care again this time for 18 months. I figured out a way to see my doctors and get my meds that I need finally.

Why do I tell you all this? I believe the ups and downs of treatment than no treatment had a big roll in my sle getting worse. I went from feeling pretty normal to working less hours and extreme fatigue. I have joint pain most of the time and swelling of the hands, feet, and lower legs everyday. I don't want you be worried as most that don't do the roller coaster care do just fine but can advance some with the sle. Just follow her lead and let her set the pace for the day.

I really don't mean to scare you so if I did I am really sorry but again want to say that my advancement had to be from the lack of treatment for the few years. I don't believe that there is a thing called mild lupus of any kind but that is what I think. To me it is like saying someone has mild cancer. Lupus is a very big struggle everyday to keep thing level and not over do things. I am glad that things are going well for both of you. I find it promising that a loved one is looking for answers for someone with lupus, in the hopes of understanding what is going on with their loved one. I did want to say from a personal experience that it is hard at least for me to share with others that don't have lupus just how bad things are as so many people think we are just lazy, because we look ok.
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