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What to do after weakly positive ANA titer with Speckled Pattern?

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  • What to do after weakly positive ANA titer with Speckled Pattern?

    I don't know if I have lupus or not. What I'm looking for is a little guidance on what I should be doing as far as testing and visits to my doctor now...first, a little background (sorry, this is a little long):

    * In 2009, I developed a red rash on my forehead after spending the day at the pool. I thought it was a weird sunburn, but it just wouldn't go away, and started spreading to my cheeks and behind my ears. I was also experiencing a lot of stress at that time due to a death in the family. I finally visited a dermatologist; she tried antibiotics and steroid creams with no success. She biopsied it in December of 2009 and diagnosed it as a cutaneous form of lupus. She prescribed Locoid lotion, and the rash improved, but wouldn't fully go away. In August of 2010, she prescribed Hydroxychloroquine, which I took for one month. The rash was completely cleared up at that point. My dermatologist suggested continued sun protection, and using the Locoid lotion as needed if the rash returned.

    * In January of 2010, as a follow-up to the biopsy, my dermatologist had me get some bloodwork done. The results came back with an ANA titer of 1:80, speckled pattern. Everything else was negative. She noted that this was a pretty low titer, and did not seem to think I had systemic lupus, only skin involvement. I have not repeated those tests since that time.

    * As of this year, 2011, I tend to have little mini-flares on my skin if I spend too long in the sun or if I am really stressed out. They usually go away with more studious application of the Locoid and trying to reduce stress.

    * Other info: For the past four years, I have had intermittent hip pain on the left side only. It comes out of nowhere, seemingly unrelated to any activity I've done, and hurts more when bearing weight. I have not reported it to my docs (don't want to be a hypochondriac, afraid of expensive tests, didn't have insurance for awhile, etc.). I also experience fatigue, but I have always chalked that up to not exercising or eating right. I am 29 years old, 5'6, and weigh 135 - I'm not really overweight, but I'm also not the fittest person ever.

    So I am left wondering if I should be repeating the ANA test periodically, or doing anything special to check that this hasn't developed any further. I reported all of the info from my dermatologist to my primary care physician back in 2010, and they have not requested that I do any further testing at any point. In fact, I just scheduled a routine physical with them, and the only bloodwork they requested is their standard physical workup. I just called and asked the nurse to verify whether they want me to repeat the ANA test or not. She seemed to think it wasn't necessary. At the upcoming appointment, I am also planning to finally have them look into the hip pain. Is there anything else I should be doing?

    Thanks in advance for any insight you can offer or resources you can point me to. Ever since the dermatologist said "lupus," I've been feeling a little scared, but yet I haven't really taken any action to investigate further whether I really have it. I guess I haven't wanted to know if I have "real" lupus or not - in some silly way, I figured if I don't get the diagnosis, I won't really have any of the problems. But my husband and I are considering children in the not-so-distant future, so I think I need to figure this out for sure, one way or the other.

  • #2
    Hi anonymouse, and welcome to the site. Lupus has more than one type. You can have discoid lupus or sub acute cutaneous lupus, also known as DLE and SCLE and also the systemic lupus which is known as SLE.

    Here are a couple of links to more information.

    http://www.thelupussite.com/lsymp.html

    http://www.thelupussite.com/skin.html

    http://www.thelupussite.com/ana.html

    http://www.thelupussite.com/fact8.html

    I don't want to bombard you with information, but those links should answer some of your questions, then you can come back and ask any additional questions you may have. I am a little suprised that the plaquenil has been discontinued, as usually it is a long term treatment.

    I am sure other members will be along shortly to share their expereinces with you.

    Comment


    • #3
      Thank you for those links! I think mine was the subacute variety, definitely not discoid. So SCLE would be the correct term then, wouldn't it? I'm really encouraged by the info in the last link you posted, which states:

      "...people with subacute cutaneous lupus often have some of the blood abnormalities found in systemic lupus and frequently joint pains, but they do not usually develop the serious complications that can occur in the systemic disease"

      Excellent! So chances are good that I would not go on to have more serious issues. Really good to hear.

      I still am not sure whether or not I need to monitor anything in the future, other than the condition of my skin. Any other advice on this topic would be greatly appreciated!

      Comment


      • #4
        Hi anonymouse -

        Has your dermy mentioned putting you on an antimalarial on a more long term basis? These are very beneficial for the skin and may be worth considering if you are having recurring difficulty with your skin.

        I guess just keep a note of your symptoms and bring them up with your doctor. You could also ask whether they think you should be monitoring you on a more consistent basis.

        Take care,

        Comment


        • #5
          My dermatologist did not talk about putting me on the hydrochloroquine for a long-term basis. She said I should come back in if the rash comes back in full force (i.e. is so bad that the Locoid can't take care of it), and if that happens, we'd do another course of the hydrochloroquine. But she didn't want me using it as a long term thing if it didn't seem to be necessary.

          Comment


          • #6
            Hi anonymouse,

            Usually Hydroxychloroquine (Plaquenil) is the standard med to put people on. It can take several months to fully kick in.
            I don't how long his course of plaq would be....
            Take care,
            Lyn

            Comment

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