Please could I have some advice?

Hi, I was tested borderline positive for Lupus 8 years ago but I was also diagnosed with APS at the same time following DVT and multiple PE's. My haematologist paid no attention to the Lupus result given the seriousness of my health at the time. However over the past 12 months I have really been struggling with horrendous fatigue and terrible joint pain in my ankles together with other symptoms of Lupus. I don't understand what a borderline positive result means and what should I do next? I'm seeing my haematologist at the end of September. Many thanks in advance x

6 Replies

  • Sorry to hear that you are struggling with everything at the moment. Have you already pushed to see a rheumatologist knowing your medical history and current symptoms? I think that would be my first course of action in your situation.

  • I would say see a rheumatologist, if you're not on hydroxychloriquin already, ask for it - only rheumatologists can prescribe. It's very good for the fatigue and joint pain. I have APS too, and there's not much we can take for pain, is there?

  • Thanks for your advice - I'll speak with my consultant at the end of the month - she may well refer me to a rheumatologist. Were you diagnosed with Lupus and APS at the same time?

  • I was diagnosed with aps in January this year, Lupus in July after asking to see Prof Hunt at Guy's. She was shocked they didn't test for Lupus at the same time! I feel I've had both for years, so not sure which came first! How about you?

  • I collapsed with DVT and PE's 8 years ago and was diagnosed with APS then. I was also tested for Lupus and got a borderline positive result but nothing was ever done about that. I think that I have been having symptoms of Lupus for the last 4 years or so but always saw GP and never put it all together to make a bigger picture. I'm sorry to hear that you have been suffering but hopefully everything will be under control soon x

  • I was diagnosed with lupus and Sjogren's last summer. Just recently I showed positive results for cardiolopin IgM and beta2glycoprotein IgM. INR is good and NEG on lupus anticoagulant. I've had no clotting event but have had one miscarriage. Without a DVT or PE, I can't get a diagnosis for APS.

    I agree with others above to get yourself on hydroxychloroquine. Helped me tremendously along with levothyroxine for my hypothyroidism. Hydroxy takes awhile to work so get on it ASAP.

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