Negative Lupus Blood results

[Kass_Bruni]

My Rheumatologist and I are quite baffled... I was diagnosed with Lupus in September 2016 in South Africa. Moved to London just over 1 year ago. Did blood tests with my rheumatologist in Feb and last week, and both bloods came back normal and a negative result for Lupus... I do have quite a few symptoms, however can it be that Lupus was reversed due to healthier lifestyle and meds, or that I was misdiagnosed in the first place (even though the blood results were positive for Lupus back in 2016)... anyone have a similar experience?

[Bacardibabe76]

Hi

Do you know what blood tests they are talking about?

My Ana goes positive and negative and other antibodies can go up and down too.

😀 L x

[Kass_Bruni in reply to Bacardibabe76]

I think it's the ANA, and all other bloods are normal.

[LupieMani]

That's quite normal. The presence or level of antibodies usually correlates to disease activity. If you have a flare up of symptoms, they will show up again.

And then, of course, there is the fact that there are many more antibodies at work which current tests do not pick up on. New tests are being developed to hopefully capture the most common of these, to provide a better picture.

Wishing you a long period of quiescence.

[Kass_Bruni in reply to LupieMani]

Thank you for the reply super helpful. The doc also mentioned there's no signs of active disease either. could this be that i'm in remission even though I do still have raynauds quite bad and my joints are still stiff and painful at times.

[LupieMani in reply to Kass_Bruni]

Yes. Raynaud's is thought to be more neurological as it is a vasospasm of the capillaries. Unless it is Vasculitis-related, it's unlikely to show up in blood tests.

Same thing with joint pain. Sometimes, it's the nerves - especially if the pain is around the joint, rather than in the joint itself. You would have to palpate to tell the difference. Alternatively, the pain can be a lingering effect of past disease activity. After the antibodies have attacked tissue, it doesn't heal quickly, and sometimes unfortunately, not at all, as not all tissue can be regenerated by the body, especially cartilage.

Hope you feel better soon. x

[Melba1]

Blood results can vary and be negative with lupus. If you still have symptoms that’s the important part to consider and treat. I can feel perfectly well and have positive blood results and be in a very serious flare and all my bloods be fine! It’s a strange disease but finding drs who understand your version of it is key.

X

[Kass_Bruni]

how confusing! it makes me question everything. so strange this disease. thanks for your reply, very helpful