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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 iguy
I am content to describe my Lupus as "mild" and I am currently experiencing only my second significant flare since I was first diagnosed 10 years ago.
The first flare in my early 20's primarily affected my platelets, took about 2 years to settle down and I then had 8 years mostly symptom-free (and drug-free). I stopped thinking about Lupus all together, occasional aches, fatigue and migraines were something I was accustomed to living with before diagnosis anyway. The only real bother was when I took out a mortgage which was quickly resolved with a slightly larger payment to the insurance company!

The recent flare behaved quite differently. Different warning signs, more rashes, joint pain and concentration problems but no platelet involvement so I wouldn't say overall that it was any worse than last time.

Like your girlfriend I work full time, am very active and lead a normal life and I am happy to believe that this is as bad as it will get for me. I hope more than anything that I'm right. I have never considered "future-proofing" my life just in case, beyond the sensible plans that we should all make concerning Wills etc, as I know that SLE taking a turn for the worse is just another "what-if" along with being wiped out by an irresponsible motorist on my daily commute!

You sound very well-informed and it's a delight to hear a partner taking such a pro-active role. It took me a while to relax and let my boyfriend support me, but his care and love goes a very long to way to making me feel better, and what you're doing is very special indeed.

I hope that your girlfriend is as lucky as I have been.
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