Blood test results

[Angelamarston1963]

Hi just wondering if you have any advice for me regarding negative ANA blood test - could I still have lupus ?

I have many of the symptoms including the butterfly rash (although this comes & goes) but had a negative ANA blood test . I’m seeing my GP again next week and would like advice on what questions I should be asking & what blood tests might be useful . He’s very supportive and has already done everything I’ve asked for .

I have pass medical history of

Migraines

TIA x 2

Hypothroidism

Fibromyalgia

Vit D deficiency

Hole in the heart and factor V Leiden

Current symptoms

Extreme fatigue

Mixture of Pain in legs, arms , hips, back and feet some muscular , nerve pain , soreness

Night sweats

All over body itching at night

I also have a rash under my skin on my back and several raised scaly patches on my back

Any help or advice would be welcome

[Loopyloo43]

Hi I think blood tests are hit and miss on this test I had one positive one when I was dx 20 years ago never had one since but had all the symptoms and been on methotrexate since. Just keep a good diary as I found there are so many things that crop up with lupus and changes regularly having a good rheaumy is so important . Hope this helps regards Sandra

[Angelamarston1963 in reply to Loopyloo43]

Thank you Sandra . I think my next request is a referral to rheaumy .

[whisperit]

Hello, Yes, it is possible to have ANA negative lupus. Here's what a recent clinical summary says:

"ANA-negative SLE – Less than 5 percent of patients with SLE are negative for ANA as detected by indirect immunofluorescence. The frequency of ANA-negative SLE is even lower in patients presenting at an early stage of their disease. In addition, SLE patients who have longstanding disease and/or have undergone treatment may lose ANA reactivity and become serologically negative over time."

If you are in the market for a technical read, the whole document can be found here uptodate.com/contents/diagn...

[Angelamarston1963]

Thank you I’ll have a read and speak to my GP

[happytulip]

I have ANA negative lupus. Mine is currently very progressive. As whisperit says 5% of people with Lupus are ANA negative.

Doctors often think that people with a negative ANA can't have lupus because only a small number of people have ANA lupus. But just because its a small number doesn't mean they dont exist.

It took over a year of being in and out of hospital to finally get my diagnosis but I am in a moderately advanced stage. Had my bloods been textbook for lupus then a diagnosis could have been made sooner.

Its also worth noting that just because you have a positive ANA doesn't necessarily mean you have lupus either.

[Sarahd1609]

Ask your rheumy to check for psoriatic arthritis. I d been through so many diagnosis’ but that could be a cause with the scaly patchy rash. I’ve been diagnosed with it even though I do t have psoriasis. Apparently mine has internalised into my joints. My legs, back, feet, wrists and shoulders are really painful and restrict my movement xx

[Angelamarston1963]

Thank you

[Paul_Howard Partner LUPUS UK]

Hi Angelamarston1963 ,

As others have said, there are a small percentage of people with lupus who may not be positive for ANA - around 2-5%. Have you had any other autoantibody tests such as anti-dsDNA, anti-Smith, antiphospholipid and an ENA screen?

Have you just been under the care of your GP or have you had a referral to a rheumatologist for further investigations?

We have a blog article about getting a diagnosis of lupus which has lots of information and advice you may find helpful - lupusuk.org.uk/getting-diag...

[Angelamarston1963 in reply to Paul_Howard]

Thank you for your reply . I’m not sure if I’ve had any of the blood tests you refer to apart from the ANA . I have factor V Leiden but my last warafrin check came back with antiphospholid syndrome written in my yellow card - so now I’m unsure if I have factor V or if it’s falls under the heading of

Antiphospholid syndrome ! I’m seeing my GP again on Thursday and will be requesting referral to rheumalogist as I’ve felt I’ll for far too long !