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Thread: your experience? trying to gain a better understanding.

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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

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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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    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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    Quote Originally Posted by SleepyInSeattle View Post
    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!
    thank you. fortunately my doctor is great and we email back and forth (21st century doctor!), so she's constantly aware (maybe too much, haha) about whats going on with me.

    what books do you recommend? i'm looking at http://www.amazon.com/The-First-Year...mm_kin_title_0 this and it looks good based on the reviews. any thoughts?

    also, i'm taking a trip next week and my doctor suggested "ProBoost." has anyone taken it? what else do you do when you travel?

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    Hmmm...well, if your doc recommends it, I guess it's worth a try....I am not really sure what it's supposed to do or what's in it. Generally, people with Lupus, Sjogren's, etc are cautioned to STAY AWAY from anything that is designed to boost the immune system (including garlic, mushrooms, Chinese herbs, echinacea, astrugalis, etc) because the whole point of the diseases is that our immune systems are TOO active already.

    Check out this website: http://www.hopkinslupus.org/lupus-in...rmation/avoid/
    Or this one: http://www.lupus.org/webmodules/weba...=2281&zoneid=3

    Both are good resources in general, and worth exploring the websites - the Lupus Foundation, and Johns Hopkins Lupus Center. They are not some weird, fringe organizations, and tend to present well-researched opinions on things.

    But of course the main thing is to discuss any supplements, diet changes, etc with your doctor and to understand that none of them replace good medical care.

    On a personal note - oddly enough, since I started taking Methotrexate (which supposedly suppresses the immune system), I have been healthier than ever. I was always one of those people who caught EVERYTHING, and had it worse than most anybody. So I was really worried about being on the Mtx. But the absolute opposite thing happened....i have not been sick ONCE - even when taking care of my daughter and husband through several viruses! It is really weird. Then, when I had to go off the Mtx for a couple weeks (you can't take it when you're on certain antibiotics), I got sick! So I am kind of convinced that it was my hyperactive immune system making me sick for all those years, not the viruses. Maybe the viruses TRIGGERED my immune system, but then it was the Lupus making me miserable. I don't really know, I am just theorizing - but it's been such a strange experience, being "the HEALTHY one" instead of "the sick one" this last year. All while on immuno-suppressants!

    So the bottom line is to read up, ask questions, and listen to your body. I wish somebody could give us definitive answers on this stuff, but the truth is that everybody's experience is different, and so nobody can.

    We do travel a lot, and I just try to get extra rest, listen to my body, have really good hygiene (wash hands a lot, etc), eat very healthy foods, and drink a lot of water. Basically what anybody does to stay healthy - I am just a bit more adamant about it. So far, it has worked pretty well for me.

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    I agree about always following your doctors advice but it seems odd To me as well that anyone would want to boost your immune system since the problem we have is an over active one. Our meds are designed to weaken our system so I would really double check and make sure that you understood the doctor correctly
    Mari

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    ~Winston Churchill~







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    SMW,

    I found The Lupus Book by Daniel Wallace to be an excellent resource. It is the book I refer to over and over as new symptoms pop up and I highly recommend it!

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