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Thread: Do you ever go off medication?

  1. #1
    Join Date
    Jan 2014
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    Default Do you ever go off medication?

    I'm sorry if this is a dumb question..., but does anyone ever go off medication for Lupus? Or is this a life long 24/7 medication? My doctor said mine was "mild-ish", and didn't have worries about it affecting my organs (but said we'd check it every so often) and that he recommend I took medication.. but never said what would happen if I didn't.

    If I stopped medication would it eventually go to my organs.... or could it? From reading (I'm not sure how good the source is) it says that people with mild SLE live normal lives and some don't need medication. I might have a bit of a "flair" going on, at least for the past few years, but it's been completely disabling me. My question is once they get it under control and the "flair" is gone.. do they stop medication? ... And does the lupus side effects come back? But I'm confused because they say someplaces it isn't curable and other places claiming it is.

    I'm sorry for the dumb question...

  2. #2
    Join Date
    Jul 2011
    suburban chicago
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    There is no such think as a dumb question with the possible exception of the question that goes unasked.

    I have a relatively mild case of SLE and am still able to work and function pretty well.
    Of course that I believe is do to the multiple meds I take, and modifying my lifestyle, as well as the wealth of information I have found here.

    I would not stop taking my meds unless directed to by my Dr.
    I feel so much better overall than prior to my diagnoses.

    I go in for lab work every 3 months at which time my meds are adjusted but I believe I will always be on something.

    And some drugs must be weaned off-it can be dangerous to abruptly stop!

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    Saysusie (05-21-2014)

  4. #3
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    Jul 2013
    Tampa Bay, FL
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    I'd like the answer to this too. Does anyone know? Can a Lupie not in a flair be advised by their doc no Lupus meds are needed?
    I was also advised I did not have the indicator and that my SLE wouldn't likely affect my internal organs (kidneys, lungs, heart).
    Does everyone in remission still pound their liver with all these meds?

  5. #4
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    Dec 2009
    Atlanta Area - Dacula
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    My rheumy has decided that I'm in remission. However she said to stay on the plaquinel, my neurologist has me on other drugs - Lyrica and clonazapan for my neural problems. The endocrinologist has me on hormones and calcium. These are all drugs that I've been told are for the rest of my life. MTX and Pred are done, except when I get infections, then I get an antibiotic and a pred pak.

  6. #5
    tgal's Avatar
    tgal is offline Super Moderator Super ModeratorEmperor of the Solar System
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    Good morning,

    remember that no one here is a doctor and many doctors treat things differently however the majority of docs will keep you on at least plaquenil since it seldom causes issues ( just keep getting your eyes examined) and it is the baseline drug. I will tell you from experience that just because you don't see Lupus acting up does not mean it isn't doing so internally so if your doctor suggest it I would stay on it. How much medicine is very individual but the majority usually stay on something

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

    ~Winston Churchill~

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    Nonna (05-18-2014), Saysusie (05-21-2014)

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