[iguy]

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.

 

[sam101360]

Hi iguy:

Welcome to the site, what a wonderful thing you are doing, leaning about your partners disease! You sound like a very caring and warm person.

In "most" cases, if deeper manifestations of the disease do not appear in the first 5 years after Diagnosis (generally meaning organ or CNS involvement), it is not expected that the disease will change much.

This is not to say that exceptions do not happen, this is just a general "rule of thumb".

This doesn't mean that your partner should not continue to be tested and listen to her body, dr's should be consulted before and durring pregancy if that ius planned, just as a precaution and because plaquenilt is passed through breast milk and to the baby while in utero.

I wish both much peace and happiness.

Welcome again - Stephanie

 

[Maia]

I feel like you just described me! My early 20's were very much like hers... pleurisy was my chief symptom and very dry eyes. Very little fatigue and minimal joint pain. I didn't even "complain" about anything until 10 years later which is when I got diagnosed with a combination of symptoms including bad joint pain, malar rash, pleurisy, long term low grade fever, and fatigue plus positive ANA and anti-phospholipids.

So I went for about 10 years with no worsening symptoms and then one day I suddenly got worse which is when I was diagnosed and put on medications (Plaquenil and prednisone too).

I did worsen significantly for some unknown reason about 10 years into the start of my symptoms but still no organ involvement. I did well while pregnant with SLE and the high risk monitoring you mentioned... but then worsened after the baby again. It goes in cycles like that for me it seems.

To answer your question... it is most definitely possible that she will never significantly worsen. If she goes another year or two without organ involvement then it becomes more unlikely she'll ever get that. Everything she has said to you which is optimistic sounding is absolutely true. And it's definitely best to be optimistic if you ask me....

Kudos to you for being such an interested and caring partner to learn more about her lupus.

 

[annie1971]

hi there

just thought i would also add my two penneth worth. This is something i have asked my rhuematologist about as i too have been diagnosed with "mild " symptoms. I was told that generally (although as previously said there is always exceptions to the rules) the more serious organ involvement generally happens in the first few years and if that doesnt happen is less likely to happen. I too get bad joint pains, severe raynauds, numbness, swollen glands and tiredness but do manage to look after my active 18 month old son. I have been told by my rhuematologist that i can have more children and that i can take plaquinil whilst pregnant ( i probably wouldnt choose to breastfeed next time because of the passing through breast milk) but would need to be referred to the high risk gynae to keep an eye on things though. It is a concern with a illness as unpredictable as lupus whether or not things could get worse but i also go through good and bad patches. There are days when i feel really good and seem to not have much pain and then days when i struggle. I try and take it easy when i feel my body is telling me to slow down which seems to help things pass a bit more quickly. Hope this helps

annie x

 

[onetay]

iguy,
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.

 

[Freya]

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.
Freya

 

[Hatty]

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

 

[Douglas]

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+

 

[sheira]

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

 

[Jesse88]

Although my lupus is slowly progressing, I wanted to tell you about my niece. She was dxd in her 30s and after being on some heavy duty drugs for a short time, went into complete remission. It's been several years now and she only has occasional joint pain. Lupus doesn't always have to stay stable or progress, it can improve to the point where no meds are even necessary, as in the case of my niece.

 

[Chaika]

I think I would probably qualify as having mild lupus now. I was diagnosed in 2002 and had kidney involvement. I didn't get kidney damage, probably because the consultant I was seeing didn't hang about and started me on medication straight away. Apart from swelling due to some kidney inflammation and the rash (which went away immediately upon starting treatment) I had no other symptoms. I was taken off all medication in January and continue to come in for regular blood tests (every 3 months or so).
I feel perfectly normal and I exercise regularly and have a physically demanding job outside, so no fatigue or symptoms whatsoever really. Do have to wear lots of suncream while outside and need to avoid vaccinations unless really necessary but this is 'just in case' rather than because these things cause symptoms. The consultant isn't really expecting things to get very much worse from here and most of my SLE grumbles have so far manifested themselves during serious infections (appendicitis, and a very bad chest infection+flu) and then only as a small blotchy rash without any other accompanying symptoms.

Hope this helps and hope that your 'significant other' keeps going strong!