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    Default your experience? trying to gain a better understanding.

    hi all,

    i, and it seems that many of you can relate, have been overwhelmingly tired, run down, and catching every virus that anyone within ten miles of me has. i've run test after test with my PCP/rheum, and an ID doctor (to further rule out things). my ANA titer remains high and consistent, which troubles my doctor, but none of the other markers that would show Lupus in my body have come up.

    i guess i just want to connect with people who can tell me what their symptoms are, what changes they notice in themselves, and anything else you wish you knew when you were starting on your journey.

    i know everyone has a different story. this is a little about whats going on with me:

    i get super, overwhelmingly tired out of nowhere, no matter how much sleep i had the night before. is that common?
    i have no energy.
    i have a decreased appetite. i feel like food doesn't taste as good... but that could just be the lack of appetite talking.
    my lymphs in my neck/throat are super swollen.
    i've also run a low grade fever a few times over the last few months.
    i also feel like i've been extremely sensitive to cold weather. i don't know if this has anything to do with anything.
    my ASO titer is also high.

    i just started Plaquenil today. hoping it helps.
    i went for an eye-exam before starting it and my eye doctor mentioned that my eyes are a little dry, which i know is also a symptom.

    any light you care to shine on your experience is greatly appreciated.
    thanks in advance!

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    It is good that you went for an eye eexam before starting the plaquinel. You need a baseline test so the eye doctor can look for changes. You always need to tell them that you are taking that drug (as well as any others) because special tests have to be done.

    dry eyes are not actual a symptom of lupus although they are of another AI disease (don't worry, we have people here with all different diseases and many of us have several or what we call "overlapping diseases"
    Mari

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

    ~Winston Churchill~







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    Quote Originally Posted by tgal View Post
    It is good that you went for an eye eexam before starting the plaquinel. You need a baseline test so the eye doctor can look for changes. You always need to tell them that you are taking that drug (as well as any others) because special tests have to be done.

    dry eyes are not actual a symptom of lupus although they are of another AI disease (don't worry, we have people here with all different diseases and many of us have several or what we call "overlapping diseases"
    yes, my rheum insisted i did. wouldnt call in the prescription until i did it.
    learning so much about AI diseases from these forums.
    thanks!

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    One thing I forgot to tell you. The plaquenil usually takes several months to work. Make sure you take it everyday or you won't get the benefit from it. It has to build up in your system so don't get discouraged in a week or so when you don't see improvement
    Mari

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    ~Winston Churchill~







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    Quote Originally Posted by tgal View Post
    One thing I forgot to tell you. The plaquenil usually takes several months to work. Make sure you take it everyday or you won't get the benefit from it. It has to build up in your system so don't get discouraged in a week or so when you don't see improvement
    Already set two alarms in my phone, 12 hours apart

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    Lupus (as with most any most autoimmune disease) is a little different in everybody who has it - but yes, many of us share your experiences.

    One of the tough things is to try to be patient while your doc searches for answers. Sometimes it helps to keep a little notebook of symptoms, questions, observations, etc that you can bring to appointments.

    And of course, read all you can. This forum is a great place, as well as other websites. But remember there;s also a lot of cruddy information out there too, so be sure to consider what the source is when you are reading.

    It's kind of an ongoing process for all of us!

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