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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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You know, as I started to read your thread I did look very carefully to check that it wasn't in fact written by my husband! It could well have been written by him 7 years ago, when I was first diagnosed.

What have we learned in this time? I think you ask very sensible questions, and of course I don't have all the answers. I would say that the last years have been characterised by ups and downs, but that in general plaquenil has been hugely effective in keeping the lupus under control. We have had two children with uncomplicated pregnancies and pleasant births, I breastfed both of them for 9 months (while on plaquenil, my doctors at least said this was no problem). It can be exhausting at times with the children, and while I was well in pregnancy I had a flare after each birth, but no serious organ involvement.

We're still learning to be flexible in our lives, to adapt to new symptoms as they come (for instance I am now photosensitive) and to try and pace my life so that I don't do too much and get ill. Stress is the big killer for me, along with too much physical exertion and now intense UV light. My husband's support is of absolute paramount importance, so I am so glad that you are so supportive of your girlfriend. It is so important not to say 'I told you so' even if you think it: sometimes I know I am doing too much/staying up too late at a party etc and I know I will pay for it later, but that is a decision I have made and sometimes it's just worth it! But it is lovely that my husband never says 'you shouldn't have done bla bla'

I could write so much more (not that we've cracked it or anything) but my delightful children are now bashing each other with a helicopter so I have to go. You are most welcome to PM me if you would like more!

x Hatty
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