The Lupus Forum banner

"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.
See less See more
1 - 1 of 11 Posts
Good to see you are so concerned and involved. You may even be competing with my wife for the famous internaitonal "Best Spouse of a Lupie" Award. I too fall into the "mild" category which I once defined as having Lupus but not yet dead. In fact, even "mild" SLE can have moments of sheer agony, roughly equivalent to the experience of a 14th century knight being chopped in two by a poleaxe. It can involve fatigue so deep that there seems to be no possibility of ever getting enough sleep or rest. "Mild" SLE can lead to profound, even suicidal, depression. It can give days when one's "body does not fit". And it can make one very hard to live with.
My MD told me at my last check up that I am "very lucky". I know it but I can forget it when my body does something particularly nasty. Assuming my thryroid died for some other reason, it is possible that I am lucky enough that I may be part of that group of Lupus patients who will never have organ damage. It is possible.
I pray your wife is in that group. Life is good in any case, though harder on the non-SLE spouse than on the patient.
Douglas+
See less See more
1 - 1 of 11 Posts
This is an older thread, you may not receive a response, and could be reviving an old thread. Please consider creating a new thread.
Top