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Thread: Is Lupus a progressive illness?

  1. #1
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    Default Is Lupus a progressive illness?

    Does Lupus get worse with time? I'm interested in personal experience as well as what the text books say. Can meds stop it getting worse, or just stop it progressing as fast? Do some people enter remission almost permanently?

    I imagine the answers will vary greatly...

    Thank you x
    I spent 2 years travelling Australia. Check out my travel blog at http://travelpod.com/members/helenlear

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    this is my personal experience.

    i was aware of the effects, (but not the name), from about 14 or 15.
    i was progressivelly getting more severe effects until i was diagnosed at 46.

    when first diagnosed, i became slightly sicker, as i started new drugs, and the desease had not yet subsided.

    some of the milder drugs had good effect on me for a few months, but my body adapted to them, and my desease returned.
    eg. depression meds, lyrica, otc pain medications.

    once i was stabalised with my meds, my blood counts returned to near normal.
    and i had a little time of almost remmission.

    this remission lasted about 2 years.

    i now am watching a few changes starting to occur, time to speak to my doctor about adjusting my meds again.

    when i was first diagnosed, i had damage to my liver, kidneys, lungs, bladder, heart.
    today i still use blood thinning medication, but have no problems with my other organs.
    so for me the pain is still there, i have no energy, and cannot physically do any strenuous work.
    my overall health is better than when diagnosed, but my fatigue is worse.
    i live a stress free lifestyle.
    if i stress about even little things, my health deminishes very quickly.

    i could not live your current lifestyle. the stress of your journey and struggles would be too much for me.
    (i do read your blog, and your threads.)

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    The answer to your question is that it depends on the person. Some people have milder forms of the disease and they get on meds that take them to a remission like state where they don't even notice it for a very long time. For others it progresses and, like Steve said, lifestyle changes must be made in order to keep it from getting even worse. Like everything with this disease it varies.

    The one constant is that all of us must take our meds and try to be as healthy as possible in order to keep the disease from getting worse. It will usually progress if left on its own
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~







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    Default

    It all depends on the person and how well one is taking care of themselves. I have never heard of a permanent remission but I have heard where people can go years without a relapse, I personally haven't been there.

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    Thank you for the responses. I'm interested in hearing lots of peoples stories because it helps me to have an insight into this illness, and also remind me on those down days that there are people living with worse and moaning less!

    i could not live your current lifestyle. the stress of your journey and struggles would be too much for me.
    (i do read your blog, and your threads.)
    I do think my current lifestyle does affect my wellbeing. It's too energetic at times, stressful at others, sleeping in the back of a van never gives the best nights sleep...but this lifestyle is also overwhelmingly incredible too. Before this I was suffering with a very deep depressive episode. Now, most days, I can't wait to get up in the morning before I've even closed my eyes to go to bed! The feeling of really wanting to live is not one I've had for a very long time previously. It doesn't look like we'll be getting sponsored to stay in Australia...which leaves us with two options...keep travelling or go home to England. I know which I'd prefer. I guess I have a milder form of lupus, at this stage anyway, and as long as it allows me to live this life then I'm going to. I can't give in yet. (By the way steve, I am always incredibly grateful when people take their own time to read my blog, thank you so much.)

    On another lupus support page it was suggested to me that I "Grieve my old life." I understand I need to make good choices and healthy changes...but hearing that I should "grieve my old life" brought me down for days. So I put sunscreen on everyday (which is exhausting by the way!!) and take medication (which I did already anyway) and have to say no to a few things, think more carefully about what I do, attend doctors appointments, spend my spoons wisely and nap more often...but I'm still Helen. I can still do a lot, which I am very grateful for. "Life fast and die young." I'd rather fill every moment of a shorter life with awesomeness than live til I'm 100 wishing I'd done so much more.

    Sorry, kind of went off on a tangent there.

    Anyway, I'm interested in hearing other experiences and ideas
    I spent 2 years travelling Australia. Check out my travel blog at http://travelpod.com/members/helenlear

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