Ana

[MandaM]

Hi my bloods always indicate my ANAs as negative and my levels of whatever are always within normal range. What does this mean please?

[Chapter]

Nothing.

[MandaM in reply to Chapter]

Nothing????? When people with Lupus have blood tests they mean nothing?

[Hidden in reply to MandaM]

If you have been diagnosed with Lupus despite a negative ANA then it means you have sero-negative Lupus - which I think affects about 12% of people with Lupus but I may well be wrong on this. I have sero negative RA with secondary Raynaud's and Sicca (dry eyes) but my ANA is negative so my rheumy is a bit dismissive of the Raynaud's. He repeated today that it's important to treat the person not their blood. I think there's a little bit of a hypocracy here with him though but my inflammatory markers (ESR and CRP) are always somewhere between raised and high. A professor specialising in Lupus and Vasculitis told me that if he could rely on autoantibodies then he would be out of a job!

[MandaM in reply to Hidden]

I was diagnosed in 2000 with SLE. It attacks my eyes, I'm light sensitive too, causes joint paint on occasion, I struggle with lungs and cardiac probs, and lost my kidneys and had a transplant. I get very fatigued. I've finally been referred to a rhemy and awaiting an appointment for a chap that comes down from London. Used to get Reynauds in 2000 but that was short lived. Always way too hot now!

[Chapter]

I am sorry if that sounded like I did not care MandaM, but a negative ANA is suppose to be good, and bloods within normal range are good. You did not give a lot of information to go on, but I did not know any history and should not have responded to your question. Again, I am sorry, I was actually happy you had no positive.

[MandaM in reply to Chapter]

That's ok, thank you.

[Hidden]

Well it doesn't sound as though you have much to worry about over your negative ANA - your symptoms are obviously pretty severe. But I don't understand why you aren't already under a rheumy consultant if you were diagnosed and have all these awful problems which go hand in hand with SLE for many? I used to always be hot too and still find I go from being massively overheated to freezing for no obvious reason. I think someone snuck into my life when I was menopausal and broke my thermostat!

[MandaM in reply to Hidden]

I saw a guy once at Brighton regarding my Lupus. He said it was unremarkable! Well if having kidney failure and being kept on a machine to keep you from dying whilst your live donor transplant op is being sorted, or having an eye condition that can thin the eyes causing them the potential to pop one day is unremarkable then I have to wonder!!!

[Barnclown]

Always an interesting topic: thanks for bringing it up, mandam

For what it's worth, after nearly 4 years of attending this forum while beginning treatment for what has turned out to be infant onset SLE + 60 years of managing what have turned out to be mainly lupus-associated chronic conditions, my feeling is that the significance of negative ANA + relatively "normal" blood results can mean only so much in their own right, isolated from the rest our profile: info gathered from physical examination, lab test results and medical history. A truly madly deeply interested & lupus-experienced doctor knows negative ANA + relatively "normal" blood results are only pieces of a patient's diagnostically complex jigsaw puzzle, and should not be primary determinants of diagnosis or treatment.

My impression is that this is why some of us are categorised for years with a "provisional" lupus diagnosis, even though we are responding so well to a full on specifically lupus treatment plan. Basically, seems to me, researchers & drs generally, are only just beginning to really understand what autoimmune conditions like lupus really are all about...so the diagnostic criteria for these conditions are constantly being reviewed and reconstructed. Meanwhile, only the more insightful, confident & determined drs seem prepared to take on the treatment of patients with negative ANA + relatively "normal" bloods. Saying that, all my life certain aspects of my bloods have been & continue to be consistently on the vvvv lowest level of "normal" and my health team do take these as seriously as any bloods results that really do fall so low or high that they meet current diagnostic criteria levels.

.....hmmmmmm

[MandaM in reply to Barnclown]

Eloquently put thank you Barnclown.

[Barnclown in reply to MandaM]

You're welcome. Glad that hits the spot... Means a lot coming from someone of your experience

[zzcat]

To Barnclown

You said it beautifully.

Bravo

[Barnclown in reply to zzcat]

Ahhhhhh, that dodgy 5-12%...always gets me going! Thanks

[Cann]

At a Lupus Information Day at Dartington in April, that I attended, Dr. Lindsay Robertson, Rheumatology Consultant at Derriford Hospital said that it is not just Lupus patients that test positive with ANA tests; many of the population test positive, too, she said.

Mine was negative, but I have and have had so many symptoms of Lupus or auto immune problems. I find I have to sort myself out as the medical profession seem to have little understanding in my experience.