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Thread: LONG post! Not diagnosed but strong suspicion...

  1. #11
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    The fact that plaquenil has to be taken everyday is why I don't want to start it at this time. I may go 2 weeks or more without any symtoms to I hate to take all that medication during the in between times. My understanding is that it only helps minimize the symtoms so why take it during times I am symstom free? When I do have flares they consist of swelling & some pain but so far nothing too terribly bad. I'm not arguing just trying to figure out how to live the rest of my life with this. Thank you so much. Everybody here has been so helpful & encouraging.

  2. #12
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    Up until a year or so ago I never finished a prescription,and rarely went to the doctor- in fact went years without having a doctor.
    Then came lupus.Now I take many meds a couple of times a day,and with nagging(I mean gentle support)from my wife feel much much better-I still have bad days& weeks but firmly believe taking my meds regularly helps a great deal.

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    lovedbyHim (08-05-2011), tgal (08-05-2011)

  4. #13
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    to my understanding........
    modern medication like plaquinel, works after it has accumulated in our bodies.
    it takes time for this accumulation to happen.

    until it has accumulated, it does not work properly.
    this is why the effects creep up on you, you donot have the "hit" of it starting to work.

    if you only take it when you feel bad...... it cannot accumulate in you..... therefore it is of little or no effect.

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  6. #14
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    Quote Originally Posted by MawMaw View Post
    The fact that plaquenil has to be taken everyday is why I don't want to start it at this time. I may go 2 weeks or more without any symtoms to I hate to take all that medication during the in between times. My understanding is that it only helps minimize the symtoms so why take it during times I am symstom free? When I do have flares they consist of swelling & some pain but so far nothing too terribly bad. I'm not arguing just trying to figure out how to live the rest of my life with this. Thank you so much. Everybody here has been so helpful & encouraging.

    Hi welcome mawmaw! Balanced is the best reason I can give to explain why I am on Plaquinil. The swings from feeling really horrible to fairly good are press now and however, the lupus has silently destroyed my thyroid and inflamed the inside of my kidneys. Some of the things lupus does, is not painful. Please know the side effects of lupus are far worse than that of Plaquinil.

  7. #15
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    To the original poster (sorry, my wonky brain can't remember your user name!),

    I know it's tough but hang in there -- it takes time, unfortunately. Some of the stuff sounds like an allergic reaction and the fact that Allegra helps you makes me wonder. I, too, have/had a lot of different symptoms and it took a long time for my rheumatologist to sort out everything. He initially diagnosed me with RA because of the joint inflammation and patterns but then GI symptoms kept on, too, and my Immuno-Globin tests for autoimmune GI disease came back positive. So, he wondered if some of the joint stuff was reactive arthritis, in response to allergic responses and GI disease because I had no joint damage.

    To make a long story a bit shorter, lol, after a lot of testing, different medications, and monitoring, it became clearer that i didn't have RA but systemic connective tissue disease, instead. SLE. I've had a lot of the pesky stuff like thyroiditis, GERD, heart, vasculitis, and central nervous system problems that go with it. And just last year, we discovered through capsule endoscopy that the GI stuff is, in fact, Crohn's Disease. The characteristic damage and lesions were there in my small intestine, along with Lupus-caused vasculitis in other parts of my intestines.

    I'm not trying to bore you with my medical drama, lol. It's just that it sounds like you've got a lot going on and it reminded me of my situation. We're like complex puzzles and the pieces have to be studied and put together carefully. You don't want to be incorrectly labeled with a diagnosis. My rheumy had suspected SLE but, as he told me, Lupus is a horrible disease and he wasn't going to go there until he was absolutely sure and had exhausted all other avenues of inquiry. Since there are many more treatments for RA and some of the treatments overlap with Lupus, he was on the fence and put me on meds that could work in both diseases. When we got to the biologic agents and I got worse on them, he knew. My symptoms and tests were indicating Lupus and remained that way.

    We're all different. Few of us have all of the most telling symptoms or test positive on all of the tests. My ANA fluctuates and while my DS-DNA may go slightly positive or to the highest end of normal, most of the time it's OK. My complements are always OK. However, my SS-DNA is always super-high. That's a less-definitive indicator but coupled with other tests, my symptoms, and progression, SLE is the logical conclusion. My rheumy has marveled in the past that I'll be sitting in front of him with a malar rash, horribly swollen finger joints, widespread joint pain, fatigue, a fever, and a goiter but when he gets my test results back, they're not horrible. They really should be but rarely are they. LOL, I've had so much inflammation in my shoulders that my tendons have torn in several places but my SED rate will just be moderately elevated before surgery. Go figure!

    Sorry for the novel, lol. I'm just trying to let you know that you're far from alone in this. We're complex, the diseases are complex, and so much remains a mystery. I so wish it could be easier for you but hang in there, OK? Places like this forum are SO important for support and questions. We're here for you!

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