Lupus disappeared?

Hi all. I'm feeling totally confused. In 2012 I was diagnosed with Connective Tissue Disorder and Lupus sle. I have been having regular Steroid Injections and now, following more blood tests, my rheumatologist has told that my lupus serology is entirely negative as is my anticardiolipin antibody and ESR and CRP. He says I don't fulfill the diagnostic criteria for lupus?? I'm totally confused. I would appreciate your thoughts on this.

7 Replies

oldest β€’ newest
  • Hi,

    It sounds like great news to me that is if your symptoms have disappeared as well.

    Good luck with your health.

  • I would say it is clear at the time. It could be that you are in remission, and therefore it is not showing in any results. You have had a positive result, it will not just go away, it is in remission. Stay positive, villigant and healthy, whilst you do not need medication it will hide and mimic other things in the future, keep it in a box in your head what the result used to be. Now focus on positive lifestyle, I am no Doctor or even of the medical profession, but when you are healthy.... ENJOY LIFE x x

  • I have similar thing going on with my RA - am told if it really was RA to begin with (confirmed by two consultants and a podiatrist) that it certainly will come back within a few months as Methotrexate fully leaves my system 100 %. Meanwhile gp won't check my bloods because i am not on any meds so not sure about ESR which is usually raised to high but I have lots of Lupus/Sjogrens symptoms but not RA and rheumatoid factor has gone from positive to equivocal now and all other autoantibodies negative.

    If you are symptom free it should in theory be a great place to be but I understand if it's not for you. For me uncertainty is more frightening than a clearcut diagnosis and I feel psychologically fairly disturbed and keep getting anxiety attacks (heart palpatations) about when I might suddenly wake up in tons of fracture like joint pain again and worry over all new and old symptoms. So the advice to enjoy each healthy day as it comes doesn't come easy to me personally although I feel it really should!

  • Some people have the signs/symptoms without the serology. I am one of those. The damage can still be going on but you can be the only judge so listen to and be guided by what your body is telling you. Equally, enjoy the remissions! Best of luck.

  • It's great that your lupus shows itself in your blood tests. That means that if it doesn't and your symptoms have gone, you can rightly assume that you're currently in remission.

    I'm seronegative, so blood tests are not useful in my case. Symptoms only. And I still have them, so no remission.

    Enjoy the moment, long it may last!

  • You don't say your age, but it IS possible that perhaps you've gone into remission??? Just be thankful...and don't even question it. Most of us are not that lucky...consider yourself as winning the lottery!!!!!!!!

  • Dawsden...I was positive for lupus back in April of this year...tested again in August, negative....rheumy says I don't have lupus or hypothyroidism (which an endocrinologist told me earlier in the year I was slightly hypo, and had nodules)....I don't get it either. I would be happy to not have lupus, but I still have inflammation in my body and symptoms. It's very upsetting. I hope you can get some answers.

You may also like...