Disease Progression?

I have only recently been diagnosed with lupus/SLE and since then I have read as much as possible about it, bought books on the subject, registered on many sites and forums. I am being treated by a rheumatologist who is currently experimenting with the right dose/combination of meds to bring me out of a long 'flare'. I fully accept that this disease has many faces and that it manifests differently in each person. I am trying to understand what the progression path is for this disease though, in general terms. I cannot seem to find a clear answer to that anywhere, so i was wondering whether some of you contributing to this forum who had to deal with this thing for many years could share their experience with their sle.

For example, are your sle symptoms worse now by comparison to when you first thought you might have it? Is that worsening taking place despite controlling medication? Did your sle start in a mild form (say joints and fatigue only) and then progressed to organs? If so, how quickly did you get there?

I know that this doesn't necessarily mean everyone will have the same experience but it would be so helpful to get a feel for this thing, I sometimes despair at how much there is to know about this.

Many thanks.

11 Replies

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  • Hi - I was diagnosed in 2005 at the age of 58 and my gp had been treating me with diclofenac for RA for a few years, despite me telling them it wasnt making any difference, and without any tests having been done. It was a locum sent me for blood tests in 2005, so many I thought they would never stop and the result about 2 weeks later was SLE.

    Since getting the right treatment I havent noticed that I feel any worse and I'm reassured by the consultant that there is no organ damage, what I have is mild, so yes I started out that way and so far 7 years on nothing has changed :) The fatigue lessened once I was on plaquenil. I need 2 tabs a day, its under control and I dont expect it to get any worse. I have osteoarthritis and the stiffness from that is a nuisance. I read the other day that SLE is linked to arthritis, yet the consultant said it was a separate thing. When my chest, feet, spine and hands were x rayed she said there was no damage from SLE....Sorry I'm not more help but thats as much as I know...

  • Hi, I am 65 years Young and was finally diagnosed with Lupus SLE, when I was 30 after severe problems from being 16 - first it was 'growing pains', my age,misscaraiges, water retention......

    When I was diagnosed I was in a bit of a bad way, could not walk hardly, fell fatigued all the time.I ask for more pain control and was told by the 'specialist' I should be lucky I wasn't in a wheel chair! -

    Changed Consultants to another hospital and VERY slowly I have got much better. I asked the doctor what I could do to help, he asked if I could swim and when I said yes, he said to try and do a couple of lengths a day (I was off work at the time due to the SLE) They pool attendants got me to disability room then wheeled me to the pool and transfered me to the chair lift to get me in the pool. managed 1 length the first day.

    I built up from there, I now do 1mile a day, I am not saying it is easy as it hurts every day until

    I go 'through the wall' then it eases up. I have had ups and downs ever since but only one that I have to take very early retirement at 50. I started on 40mg steriods daily along with numerous pills same as you. I have now got it steady at 5mg.

    I still have good days and bad ones, listen to your body, if it says sleep - get more sleep, but I do recomend you get help to get in a pool and loosen your joints.

    I consider myself lucky, yes I get kidney infections and chest problems when they Up the steriods, have had a spine opp. But on the whole my friend you should stop worrying about the future, live each day as it comes and Laugh every day that we are alive, a laugh a day keeps the doctors away - throw the apples at those who deserve it! Good luck.xxx

  • Hello Purple top

    I am 53 and was diagnosed about 8/9 years ago after beeing ill since the age of 29, even before that my immunes system was crashing and looking back I have had tendon issues since childhood. I was told that I had ME when it was popular and have been seen by countless doctors with now clear outcome for a very long time.

    My life now is fairly normal, I look healthy and walk the dog twice a day, I do mild exercise and can read write, bake bread, talk coherently, do the crossword and once a fortnight attent a pub-quiz during which I show off my mental capacity for obscure unformation retreival. This weekend I plan to build a small wall out of bricks ( never laid a brick in my life)

    During the course of my illness things have been very different, each of the above activities was lost and regained over many years. Didnt read a book or paper for 4 years, lost most of use of my hands - very painful and weak. Terrible fatigue, memory loss, speech slurred when tired, poor concentration, headaches constantly.

    But Lupus is a very personal illness, in as much as we each have our own personal version of it.

    I dont think there is much profit in second guessing it. It is what it is, and we have to get by as best we can.

  • Thank you everyone for taking the time to share. I realise that there is no certainty and is best if I just accept it and live with it. I am probably still at the stage where that in itself is difficult. It is terrifying to think that anything can happen and that there is no control. I am afraid of the unknown and of the realisation that the body that I took care of until now is under attack and I cannot do anything about it. I'm so afraid, I stay up until early hours in case the disease is going worse during my sleep. It sounds irrational, I know but I am sure I will find a way to put things into perspective soon. Thank you again.

  • from what I have read about it, going to sleep on a regular pattern is helpful. staying up late in fret and woe is a sure way to degradation.

  • sleeping is the healer not the enemy

  • Lolled at the "obscure info retrieval" Thaddeus - me too - maybe that's a previously undiscovered symptom ;)

    You're definitey on the right path Purple - knowledge is power although this particular education can be very scarey and confusing at first! As to progression, it's something of a lottery but really depends on your present age, when the SLE was triggered, your symptoms at diagnosis, how expert you become at managing them and your tolerance for the drugs used to control it. In many instances, the drugs can cause as many (if not more) problems as the lupus itself and should always be researched too.

    My SLE was triggered by pregnancy when I was 29/30 (evidenced by some inexplicably-odd blood test results) but took another 9 years to bring me to my knees and be properly diagnosed. Therefore the course of my disease is considered "slow onset". Slow onset (and "late onset", at 40+, for that matter) SLE rarely becomes life-threatening and one can probably expect to live a normal life-span. Conversely, it's generally held that those whose lupus begins early in life and quickly becomes very aggressive indeed face far greater concerns.

    That's not to say slow or late onset lupus isn't physically or mentally devastating, incredibly tricky to manage, nor that either excludes any organ involvement. However, attacks on organs tend to be less critical than in early onset SLE.

    The way I devised of coping with and retaining a modicum of sanity in the unknown abyss of this wretched disease was to educate myself about SLE and the drugs used to treat it then refuse to become concerned unless or until confronted by a particualr problem ... otherwise, you could needlessly worry yourself to death! I hope this helps Purple, hugs x

  • Hi Purpletop. I'm 59 and was referred to a rheumy in April this year. Haven't yet got a diagnosis but have been prescribed Plaquenil. Main symptoms are fatigue, joint pain, eye flare ups (uveitis), the lovely butterfly rash and poor lung function (test gave my lung age as 79). Looking back the symptoms started about 27 years ago after I had my first child (never been ill in my life before then). There followed years of 'hayfever' that became 'asthma'. Couldn't get it under control so it was put down to 'stomach ulcers' causing 'gastric reflux' resulting in coughing. Nothing stopped the coughing. Then I had 3 miscarriages (eventually got a second child - I don't like giving up!!!). Fatigue put down to busy lifestyle and poorly controlled 'asthma' causing broken sleep. I've been on steroid eyedrops for about 4 years. My GP dismissed the malar rash as a red face after exercise and the joint pain as part of the aging process. Over a year ago I asked if my symptoms could be Lupus but this too was dismissed by my GP. Then a blood test showed raised rheumatoid factor. GP suspected rheumatoid arthritis but was reluctant to refer because the condition wasn't bad enough. I went back and pushed until I got a referral to a consultant.

    And on a more positive note I don't know if I have Lupus but since the rheumy prescribed Plaquenil my skin is improving and I think, sometimes, the coughing is improving. I feel more positive about the joint pain too. I don't know if these are real physical improvements or if I am coping better because at long last someone has listened to me. I know from what people write on this site that this is a complex condition and some people suffer more than others. All I can say is, I feel that I will cope as best I can, will ask for support when I need it and I won't dwell on what the future holds. You asked about the progression of the condition. I can't say more than this - I don't feel any worse than I did 10 years ago. Keep positive. Live life and remember, you are not alone.

  • Guys, I don't know how you manage to be so brave but I thank you for giving me hope that I may be able to be so myself at some point. Thank you very much. Purple

  • I first developed SLE when I was 12 years old in the late 1970's. Because it was the 1970's and I was in a small town and a child no one knew what was wrong with me. It was only because I had such a severe case and was admitted to hospital as an emergency and a nurse happened to know about Lupus, I was sent to St James in Leeds for tests and diagnosed.

    Nowadays many more people know about Lupus and it is well known that it is more common in adult women, there are more treatments now and more doctors specialising in it.

    It is is unfortunate that in order to learn about our condition we can't really avoid reading about the worst case scenarios, however most people with Lupus do not get any worst case scenario. People on a support forum may be more likely to have a more than average intensity of illness, because if we were well we would all be out at work or on the golf course or whatever , in my opinion.

    If you are seen by a rheumatologist they should be able to refer you to specialist nurse who knows your history and can give you advice about exactly that sort of question you are asking.

    Hope this helps,

    Herb

  • Management is everything, and sleep is key. I understand your worry, but dont let anything get in the way of sleep.

    You will get your life back one day, but you will never run the new york marathon.

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