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Questions about bloodwork and symptoms

Discussion in 'Newly diagnosed' started by Kiewi5, Jul 11, 2019.

  1. Kiewi5

    Kiewi5 Member

    Hi there, I was recently diagnosed with SLE in the beginning of April of this year in the midst of a flare. I received blood work twice in April, resulting in diagnosis due to positive ANA and high CRP and anti DS-DNA in combination with symptoms, and was put on plaquenil. I was also given two pulse packs steroids and took a daily low dose steroid in between and after the pulse packs. End of May I received blood work again, and CRP went down but anti DS DNA was the same. I started tapering off the low dose steroid and stayed on the Plaquenil. I have now been off a steroid for about three weeks and just got more blood work done last week and now my CRP is at the high end of normal and DS DNA is negative at <1:10 (this is a different test than before; the others had a range instead of titer). I am still experiencing symptoms, occasional night sweats, random joint pain typically in shoulders and hips, and stiffness/swelling in the hand, scalp pain, which is all annoying, but tolerable and much better than before. This may be naive of me, but I thought once my lab values were normal I wouldn’t have symptoms anymore or at least they would be even more mild. Anyone else have their labs go back to normal with treatment yet still experience symptoms? Did your labs after fluctuate? Any info is greatly appreciated! Thank you!!
  2. x_claire_x

    x_claire_x Moderator

    Hiya,,,, clinical bloodwork does not mirror how you are feeling. People can be diagnosed without any abnormal bloods but just with their symptoms alone. So the bloods are essentially only part of the picture. I felt at my worst when my bloods were ok :0((
    Yes bloods do fluctuate and steroids etc do alter the values.

    If you are still getting symptoms then your disease is still active, I guess it depends on the severity, but I would definitely still be keeping a daily diary at this point, noting down the symptoms each day and pain grading is amazing how much we put up with...especially when it has lessened a bit. I hope it continues to improve for you............Claire
    sagehen likes this.
  3. Robin Jackson

    Robin Jackson Member

    Also, Plaquenil can take up to 6 months to build in the system, so hang in there!
  4. Kiewi5

    Kiewi5 Member

    Thank you both for your response; I really appreciate it! It’s been really helpful to have this forum as a support.
  5. MissDaisy 1

    MissDaisy 1 Member

    Plaquenil can take awhile to kick in. I think I took it about six weeks before I started feeling a bit better. I found out from my rheumy it takes about a month for the Plaquenil to leave your system (the half life). How I found out was me asking about what to do about getting an extra supply of meds in case we had another major earthquake. I have loaded up on water, food, etc. and was checking about meds for our earthquake supply kit.

    I won't add anything more about the test results as others answered it better than I can.

    DX: Rhupus
  6. Kiewi5

    Kiewi5 Member

    Thank you!!
    MissDaisy 1 likes this.

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