High ANA, negative ENA, non-specific symptoms, undiagnosed | Lupus Forums at The Lupus Site
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High ANA, negative ENA, non-specific symptoms, undiagnosed

Discussion in 'Not Diagnosed Yet?' started by puglife, Dec 26, 2017.

  1. puglife

    puglife New Member

    Hello everyone, I am new here. I wanted to see if anyone else here had a similar experience with an autoimmune disease or advice/insight to offer.

    I'm a relatively healthy 27 year old female and I began experiencing joint pain in my fingers in early November. No redness, no swelling, just asymmetrical joint pain (2-4/10, really mild but noticeable pain) that flitted from joint to joint, never lasting more than a few minutes. I thought this was weird because I never had joint problems before and all of a sudden, my hands were hurting on a daily basis. I am also a nurse and use my hands a lot, but I've been a nurse for a couple years now. Since November, the joint pain has also hit my knees, elbows, and wrists, but less frequently. Occasionally, I go through short periods where my body just feels very tired and heavy, even if I haven't done anything physically taxing. Sometimes certain spots on my skin feel extra sensitive to touch, as if I had a burn there, but the skin looks normal on the surface. I also recently experienced what I thought was costochondritis for a few hours.

    I went to my primary and had a lot of bloodwork done. The only things that stood out were:

    High ANA titer - 1:2560, homogeneous and speckled
    Low vitamin D - insufficient but not deficient
    Low alkaline phosphatase (twice in 2 months) - I was told this is insignificant
    False positive Lyme test (confirmed by negative Western blot, only positive in IgG band 41)

    An ENA panel was sent as well, all negative. I was referred to a rheumatologist because the pain did not stop. The rheum performed nailfold capillaroscopy, said my capillary loops were all very dilated, and said this is highly suggestive of secondary Raynaud's. My fingers and toes have always been very sensitive to cold, but there was never a color change, just pain and numbness. Rheum ordered more bloodwork for less common tests because she's "basically looking for any clues at this point." I should get results this week or next week. She also suggested starting Plaquenil, but I haven't decided on it yet because I'm still trying to weigh the benefits. Since my pain is mild (only once did it ever feel like a 5/10 for a few seconds), I don't know if I want to take something every day for it. I will say that the pain is irritating, however, because I am a nurse. In a typical week, I give over 100 injections and the repetitive movements do not help =/.

    At the moment, my rheum is calling it "undifferentiated connective tissue disease," which is unfortunately very broad. I was told to watch my body carefully for new symptoms because my ANA is so high that an autoimmune disease is very likely to manifest itself. Sorry this is so long! It is frustrating to hear that something may happen, but we're not sure what or when.
     
  2. mark176

    mark176 Active Member

    Hi

    I have the same condition uctd. I was initially prescribed plaquenil. When that wasnt enough i was given mepacrine. I found that overtime the condition actually got worse and i suspect those medication bought me time and slowed down its progression.

    I now use an alternative route. My advice would be to try the plaquenil first as it has few side effects. Infact benefits probably outweigh negatives.

    If you leave it too long as your rheumy says it will get worse and you could unleash something that is harder to deal with.

    I will tell you to watch your diet! Personally i found sugar, wheat and milk make problems worse.

    Kind regards
    Mark
     
  3. omen

    omen FKA Clare.T

    Welcome!
    It would be very interesting to know what the other tests were. Blood clotting tests for anticardiolipins/antiphospholipid antibodies for example.

    UCTD diagnosis means there are no signs of any specific connective disease, nothing 'unfortunate' about it. There are only two for lupus - lupus specific skin and anti ds DNA.
    An SLE diagnosis can raise complications with insurances.

    Treatment is much the same for all of them with a variety of therapies used for other symptoms as required.
    Plaquenil is a remarkable disease modifying medicine. You might find that's all you need to get the disease under control and stop the aches and pains.
    People who are in remisssion often stay on a very low maintenance dose. I'd say you are in good hands.
    Let us know please how it goes.
    Clare
     

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