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Thread: you have it, no you don't

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  1. #1
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    Default you have it, no you don't

    My pcp ran blood tests that showed a positive "ANA and positive SM antibody, so she said I have lupus, She sends me to a rheumy who doesn't seem so sure so he ordered a bunch of tests (are you sitting down - 32 vials of blood they drew) plus urine and stool samples. My PCP put me on Plaquinil because she said thay is what they would do but after 3 weeks on it I don't notice any change. Anyone have a bit of light to shine on this - would greatly appreciate.

    :roll:
    Gloria

  2. #2
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    Did she say anything about Prednisone?

    32 vials of blood?? In one sitting??? OMG!!! I hope they at least gave you some cookies and juice after that!!! When I was admitted to the hospital they took a lot for blood... But, at least they spread it out!!! Whew!

    When do you get the results from that test back??

    I've also heard (I could be wrong) that Plaquinil takes a while to build up in your system enough to notice a change...

    It was interesting, a friend of mine went to a Lupus Research seminar, and they said that the only approved treatment for Lupus is Prednisone, Asprin, and NSAIDS... I thought that was kind of odd...

    Anyway... I am babbling!

    Let us know how it turns out!!
    "All sounds are potentially dangerous.
    All sounds are potentially medicinal.
    All sounds are beautiful." ~Yoko Ono

  3. #3
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    32 vials of blood!?! I thought the 17 they took on my visit was bad! You have my sympathy there. I've had similiar problems (and still no official diagnosis). I was on Plaquenil for about 3 weeks and then taken off due to it effecting the bloodwork I had have done. My doctor at the Lupus Center in Pittsburgh stated that 3 weeks was most likely not long enough to notice an improvement. Keep track of your symptoms and keep being your own advocate. That's a lesson I'm still learning, but hope to pass along.

    Take Care

  4. #4
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    geezz I wouldn't have been able to walk out of there after that much blood drawn. 3 vials makes me woozy.
    I've now been on plaquenil for 7 months. The changes have been gradual and at first I was very frustrated. But the dr kept telling me it takes several months for it to get better. It has. I don't have as many fevers and the everyday pain isn't as bad. Have been flaring for the last week tho and I'd hate to think how bad it would be if I weren't on the meds. So I'd say give it more time and hopefully it will kick in.

  5. #5
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    You shouldn't even be looking for results from the Plaquenil for at least 6 weeks. It builds up in you system gradually and will be at its peak at 6 mos. (which is where I am). I began noticing some definite improvement around the 6 week mark and now at 6 months my flares seem much milder and less frequent. If it makes you crampy/gassy(sorry), I've heard simethicone helps. My crampiness has gotten less and less as time goes on, but it still affects me some days. Don't forget to get your eyes checked regularly(every 6 mos.) while you are on it. Junebug

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