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"Mild" lupus and life thereafter

2493 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 - I'd like to share my story too if that's ok.
I had been ill on and off for a few years including severe migraines and have always had a low white blood count.

I had 2 babies and suffered considerably in pregnancy and childbirth including anaemia and pre eclampsia and post natal depression - both were em caesarians.
I suffered on and off after and lost jobs due to constant headaches and infections.

My third pregnancy was horrendous - I was absolutely exhausted and anaemic and nearly died during caesarian as i lost 8 pints of blood. After having my third baby things got considerably worse I suffered severe exhaustion and depression and had a really bad breakdown I really didnt know what was happening. I was at the gps every week and my blood counts were always down and showed infection but they didnt know what was wrong. It was only when my hair started falling out that i saw a dermatologist who took blood tests that indicated connective tissue disease.

I was put on plaquenil but was allergic to it and was basically left for a yr without treatment when i got considerably worse.

My bloods are often highly irregular or normal and i have frequent shows of blood and protein in my urine every now and then.

This year has been the worst I have been on metho. imuran and have been allergic to both and so have just had 2 cycles of rituximab. I have also been diagnosed with raynauds and have iloprost infusions.

I am taking steroids, calcium, codeine, paracetamol, tramadol, lanzoprozol, diazepam, folic acid, diclofenac, metaclopramide and imigran all adding up to 40 plus tablets a day.

My joints are awful and i can hardly move on some days and am extremely fatigued - the pain is unbearable sometimes. My memory also is abismal and i have sleep problems including night sweats and night terrors, anxiety and confusion.

I always wonder if the yr i wasnt offered drugs made it worse as it was said to be ' mild' then.

My worry is prognosis no one ever can really tell me what will happen. I've been to a and e on 4 ocassions this year with paralysis in legs, severe stomach cramps and diarhhea, passing out due to hypotension and chronic leg pain. And admitted 3 times for chemo and iloprost infusions.

I feelawful at the moment and am not sure what the future holds.

Thanks for listening
Sheira x
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