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Thread: Don't understand Lupus.

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    Default Don't understand Lupus.

    Just been diagnosed...still waiting to find out if it's actual Lupus or Drug Induced as I'm currently taking Carbamazepine. But I'm just wondering...my main symptom is joint ache. So does that mean that the auto immune disease is attacking my joints? Or does that mean I have an auto immune disease that is affecting another part of my body and the joint ache is just a symptom? I don't understand! I've read lots about it but nothing seems to give a straight forward answer to this. Can anyone help? Thanks x

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    hi shine,
    i cannot help with your question.
    i know someone will help, but the forum is usually quieter on weekends, and busier during the week.

    i did want to say hi though.

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    Hi Shine,

    From all the info I've got from docs about lupus/auto immune diseases...your immune system is designed to attack foreign "bad" things in your body but people with lupus have an overactive immune system which causes their immune system to attack healthy tissue/cells etc which causes the joint pain and organ involvement. this is why so many people take immunosuppressants. theres some good information on this site about the symptoms of lupus you could have a read of.
    Diagnosed with SLE and Antiphospholipid Syndrom - June 2010

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    rob is offline Super Moderator Super ModeratorEmperor of the World
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    Hello Shine,

    Welcome to WHL. Here is a link to a Lupus site that explains the reasons for joint pain in Lupus in layman terms-

    http://www.lupusny.org/about-lupus/f...nd-muscle-pain

    Rob

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    Gizmo (08-28-2011), Shine (08-28-2011), tgal (08-28-2011)

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    14 years I was told I had Rheumatoid Arthritis. My joints would get so bad I'd be in a wheel chair for a week or 2 at a time. It fit the description of RA to the letter. Symmetry, fevers, hot joints, responded to steroids, all of it. Until 2007 when my right knee would ache badly but not my left. And other symptoms appeared. The malar rash, the sun sensitivity and so on. I finally went to my regular doc in January of this year, said the RA was getting to be more than I could handle and she said she had done all she could for me and it was time to see a rheumatologist. Off I went. He did lots of blood work and x rays. The x rays showed my joints looked like those of a 20 year old (I'm 48). Told him I'd rather have the boobs of a 20 year old. He said that wasn't his department. (Drats!) If it was RA, after 14 years, there would have been joint damage. The blood test confirmed his suspicion of Lupus. Lupus, as I've come to treat it as a living,breathing entity, likes to bully my joints. That's the case in my particular situation. Yeah, I get other symptoms as well, but my joints are lupus favorite target. Spend a work day under flourescent lights and I feel like I've been run over. I'm on plaquenil and that keeps the lupus monster rather manageable. Doesn't do a blasted thing for the fatigue and brain fog but it chills out the monster on my joints.
    "I'm going to get healthy or die trying"

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    Welcome Shine. I'll keep my fingers crossed that your lupus is from Carbamazepine - what an easy solution. We are here for you no matter what the diagnosis. Please look around and let us know what happens!

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    Thanks for your responses, much appreciated. I took a look at the link too which was helpful. I still can't seem to understand though....is lupus JUST affecting only my joints? Or could it be affecting my organs too? Nowhere seems to clarify this. Is it ONLY my joints that are affected? Or could my kidneys/brain/lungs/heart be affected too? Sorry to labour the point but it's doing my head in not understanding..

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    yes lupus can effect your organs also.

    it effects different people in different ways. that is why it can be hard to explain.

    with me, i have lupus effecting my blood.
    therefore, lupus effects everything that has bloodflow through it.

    others are effected differently, so the type of effect can be different, even if the same organ is evolved.

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    Lupus can effect your organs too. I had pleurisy with my first flare (lungs) and if it is not under control it can effect your other organs. If you have a rheumatologist then i would suggest you talk with them and they will explain further about how the medication we have to take can stop us from having organ involvement.
    Diagnosed with SLE and Antiphospholipid Syndrom - June 2010

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    Just waiting now to hear from the Rheumatologist. Apparently some of my blood results would suggest that I have lupus and others would suggest that I dont...from what I've been reading on here that is a pretty common occurance. Hopefully the rheumo will be able to shed further light on it all for me, it is all rather bizarre! All I want is for this sodding joint ache to stop. And if I have to change my current meds I'd like to do it asap as I have Bipolar Disorder so changing meds aint easy. I'm travelling Australia at the moment and am very lucky to have somewhere stable to stay at the minute but have plans to move on in the next few weeks. The doc suggested a possible change to Lithium...don't suppose anyone knows if that has links to SLE?

    Thanks again for all of your replies.

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