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Thread: Hi All Newbie here my partner was diagnosed in April 2011

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    Red face Hi All Newbie here my partner was diagnosed in April 2011

    Hi Everyone as mentioned above my partner Alan was diagnosed with Lupus Nephritis SLE stage 4. I have to say it was good to finally get a diagnosis to all his symptoms however we had never heard of Lupus (except on House)!!! so we left the hospital not really worried as his doctor never even explained it to us or how serious it is. That all changed when we came home and googled then we were worried.!! The Lupus is just another thing to deal with on top of everything else that has happened to him as he was involved in a motorcycle accident in Nov 2006 where he sustained muliple injuries he broke his neck in 2 places C1 & C6 he fractured his sternum broke both his hands tore the main artery(Aorta) in his heart and completely smashed his left leg up this has been re-built twice since. So as I said we've had our fair share of worry and ill health already he got diagnosed with Kidney failure in 2008 stage 3 however its taken the doctors till now to diagnose Lupus as he's been too ill to do a kidney biopsy on. Anyway I am so glad i found this forum while researching and I appologise in advance if I use this site to "Vent" once in a while or ask questions etc but we are still trying to get our heads round all this.
    Thanks Mary.

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    Hi MaryS! Welcome to WHL. I had to chuckle at the "House" comment. You do know that he FINALLY diagnosed a case of it about 2 years ago LOL.

    I am really sorry for all that you and your partner have gone through! Although no one knows exactly what causes Lupus or other AI diseases there is a growing belief that many people have the potential for the disease in their body however they have to have a catalyst to "turn in on". Those catalyst are believed to include exposure to some sort of chemical, accidents, surgeries or even severe times of stress. Basically many of the things that he was involved in! I am so glad that you decided to join our WHL family! There are tons of people here which transfers to tons of information. Please feel free to look through the old posts or start new ones if you want. I look forward to getting to know you!
    Mari

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

    ~Winston Churchill~







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    Hello Mary,

    Feel free to vent whenever necessary. Welcome to our group!

    Rob

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    Hi Mary's, As I read this I was thinking about how hard it is for the partners of us with Lupus. I think at times it must be harder for you than for us. Watching suffering can feel so powerlessness. Reaching out is to talk with others who understand this, is new to me, and wonderful! I hope you find the encouragement you need.

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    Hi Guys Quick question can sun exposure cause a flare or at least make you feel quite ill as you can imagine we dont get to see the sun very often here in Scotland but yesterday was a particularly very hot day and although Alan did everything he's been told to do ie: high factor sun screen hat on head etc he felt very ill he could barely lift his legs to walk they were shaking a lot he felt dizzy and sick he didnt actually vomit but felt as if he was going to be all day my question is was it the sun that made him so bad yesterday or was it the drug cocktail he has to take of 750mg twice daily of Mycophenolate(Cellcept) and 50mg daily of prednisolone?????? He has good and bad days but yesterday was the worst one so far!!! Thanks Mary.x.

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    yes, sun exposure can cause a flare.
    there is quite a few threads about this.
    sun light and flourecent lights give of ultra violet rays.
    these rays cause the flare.

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    I am not sure why he was feeling so sick, but it could be a combination of his medication and sun exposure. It would be good if he makes a journal on his symptoms so he can see a pattern.
    Diagnosed with Lupus - 22 June, 2010

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    I saw that House episode and began crying. Too emotional for me..
    I didn't know lupus had stages. Can someone explain further?
    "If you change the way you look at things, the things you look at change" (Wayne Dyer)

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    The stages Mary was talking about is kidney disease, not Lupus stages
    Diagnosed with Lupus - 22 June, 2010

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    Sunlight and/of Florescent lighting can absolutely cause a flare. It does it to me every time. It not only messes with my Discoid Lupus (skin) It can send my SLE into a downword spiral. I am adding a link below that will take you to the sticky about Photosensitivity. I do hope everything gets better!

    Sun and flares
    Mari

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