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Thread: Plaquenil

  1. #31
    Trudy's Avatar
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    Quote Originally Posted by mishb View Post
    My rheumy wants to start me on Plaquenil because according to research it can decrease joint pain nearly over night.

    We have up'd the MTX again and I remain on 5mg of pred. Joint pain came back when I got down to 5mg but not as bad as before diagnosis. This is the reasonfor the plaquenil.
    Hi Michele, I have taken Plaquinil for 6 years. If you do end up taking it, please do not be discouraged if it does not work overnight. In most cases it can take 2 weeks to 2 months to work. I think it works by building up in your system. I do know it helps to keep your body from flaring (for Sle). My doctor let me go off it twice at my request and then after flaring both times he suggested we don't try that again. I do have eye exams every 6 months. I also take 50,000 IU of vitamin D by prescription every Friday, and come Thursday my blood test is always low again.

    I take Imuran and 20mg Prednisone right now. When I lower the pred symptoms get worse. I haven't taken Imuran that long, so hopefully I can try reducing the pred again soon. Mostly it is a guessing game of finding the right combination for each of us. I do take Tramadol for pain. I didn't think it did anything but I tried tapering it down only to increase it again.

    As far as autoimmune diseases varying and overlapping, I am in the same place as you. My ANA is never positive, but I have Lupus. My ANCA (both MPO and PR3) is positive and I sinus, lung, and kidney involvement of WG. Conveniently the same medications are used in both.

    Hope they quickly find what will help you! If you are prescribed the Plaquinil and want tips on taking it, feel free to PM me.

    Trudy

  2. #32
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    Thanks Trudy, greatly appreciated.

    Both ANCA MPO and PR3 have always been positibe until this time. ANA has always been negative until this time. Just strange.

    I have now read up on visited a lupus forum and some of the symptoms are exactly me. I have never had a rash though and I have sinus/crusting, ear and eyes, and I don't think that is something in SLE.
    I see hematology/oncology in a few weeks so will see what they say because ENT are still just saying you wouldn't have the crusting if you didn't have WG

    I didn't think plaquenil was a miracle worker overnight or everyone would be taking it. I think my rheumy was just being nice.
    One step at a time.....we will see what the eye specialist says first, but I'm glad you didn't have any adverse side affects.

    Thanks again
    Keep Smiling
    Michelle


    Do you know why gaps between fingers were created?
    So that someone who is special to you, comes and fills those gaps by holding your hand

  3. #33
    Sangye's Avatar
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    Quote Originally Posted by Trudy View Post
    I also take 50,000 IU of vitamin D by prescription every Friday, and come Thursday my blood test is always low again.


    Trudy
    That's because it's almost impossible to absorb that much vitamin D all at once regardless of the quality. Add to that the fact that prescription vitamin D is in a poorly absorbable form....

    There are many other nutrients and factors involved in vitamin D absorption and use. The medical approach of slamming the body with a mega-dose of poorly absorbable D once a week is just insane.

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