ANA

[Molly2012]

Hi, My bloods came back positive for Lupus and the Dr told me it was Lupus. I have all the symptoms and have been ill for about six years. I had my 1st F2F with a Rheumatologist and was told my ANA was negative and because I hadn’t ever miscarriaged she didn’t know if it was. Hi Dd I feel dreadful can you have Lupus without a positive ANA?

[panther50]

Hi Molly i’m So sorry that sounds awful. Because you’ve never miscarried it might not be Lupus! I don’t know if this helps but I definitely have SLE diagnosed by an expert and by a very specific anti DNA test. However I have had negative ANAs over the years and they are mostly only weakly positive. In 2019 a junior doctor tried to remove my diagnosis because of a negative ANA, I had 2 of the most respected consultants in the country reject this and confirm my SLE. It seems there is a school of thought that without a positive ANA you can’t have lupus. It’s unusual but it is possible to have it with a negative ANA. As for not having had a miscarriage. I’m at a loss for words why they would say this as it’s only one of many possible indicators. Lupus is difficult to diagnose and you may not have it (even with a positive ANA), but it shouldn’t rule it out.

[Molly2012 in reply to panther50]

Thank you so much for your reply, it’s good to hear what people who have Lupus have to say as you are the ones that live with it. I read the report she sent my GP and she has asked to see me again in 8 weeks and do more blood tests. I was pleased to see she didn’t say I didn’t have it and said I was positive for Anti-Beta 2 glycoprotein Igm antibodies and Lupus anti-coagulant. I just feel so ill and want to feel better x

[KayHimm in reply to Molly2012]

Well, that is pretty significant. It means you are ANA positive and have anti phospholipid antibodies. Your picture is strikingly like many of us, including me. They do not give the lupus diagnosis until you meet the criteria unless maybe you have kidney disease. But they will clearly be watching you. The rheumatologist could give you a diagnosis of UCTD and treat. You have to wait and see. I was given a diagnosis of UCTD with pretty much your picture.

I am unclear. Who ordered more blood tests? Are you still going to the rheumatologist? Your doctors are on too if things and definitely concerned.

Hang in there. Not an easy time I’m limbo.

K

[KayHimm]

This is a little convoluted but maybe what the rheumatologist was surmising as that the fact that you didn’t have misconceptions made it more unlikely that you had certain auto-antibodies that can make the ANA negative. They may have to keep testing you since you are going from positive to negative.

It is really important to report any symptoms to your GP. They can repeat ANA and certainly do basic blood tests.

[Molly2012 in reply to KayHimm]

Thank you for your reply, I did an update in the first comment but she has asked for more blood tests and to see me again so fingers crossed I may at some point get my life back x

[KayHimm]

You have had a long road - six years. Sometimes they can diagnose mild autoimmune disease without giving it a specific name. In that case they could treat your symptoms.

What are your symptoms?

Hope you get answers soon.

[Molly2012 in reply to KayHimm]

I have just about all the classic signs of Lupus, apart from thyroid problems x

[Callumlee123 in reply to Molly2012]

Hi molly not sure if I’m in the right place but was hoping you or someone could help. I’ve been diagnosed with fybromyalgia due to negitve ana. But my symptoms are same as lupus and I’m convinced it’s lupus . I’m now under gastro awaiting mrcp results due to a prominent bile duct and all over abdomen pain worsening as time goes on . They done a couliac screen which first part of test IGA level came back boarder line at 0.3 u/ml and the range is 0-7Would you know if this makes me immunodeficiency

Would love to hear anyone thoughts on what this result mean as I know lupus can cause a low IGA LEVEL.

Thank you

[KayHimm]

**miscarriages

[KayHimm]

Sorry. I got you confused with another forum member. Your ANA is negative but you have anti- phospholipid antibodies that are also part of the lupus picture and thought to make the ANA negative. At least that used to be true. In other words, your ANA is really positive but the other antibodies are cross reacting.

Glad they are following up. You might want to ask if you could be treated with a presumptive diagnosis of autoimmune disease. I was given a diagnosis before positive ANA based on anti cardiolipin antibodies and symptoms.

Good luck with this

K

[baba]

Men get Lupus, they don't have miscarriages.

Lupus is not diagnosed on blood tests alone.

Lots of accurate good information on Lupus UK Website.

lupusuk.org.uk/publications/

See also:

ghicworld.org/

healthunlocked.com/hughes-s...

Blood tests for Hughes Syndrome/APS

1) anticardiolipin,

2) beta-2 glycoprotein I (β2GPI),

3) lupus anticoagulant.

They need to do these tests twice, 12 weeks apart, to exclude false positives.

[Molly2012 in reply to baba]

I am positive for Anti-Beta 2 Glycoprotein IgM antibodies and Lupus anti-coagulant. Creatinine of 88 and eGFR of 65. CRP 23 and ESR 33 both have been raised since 2015 which is roughly how long I have felt dreadfully ill. There is more on the bloods but that gives you an idea. I really thought after all this time I was at last going to start to feel better. A very good point on the subject of miscarriage, and I did point out that I haven’t been or tried to fall pregnant for many years as my children are adults with children of their own. I am lucky as she has asked for more blood tests which will be the 3rd lot and wants to see me in 8 weeks but she told me she is leaving so it will be someone else.

[panther50]

I think part of the problem with lupus is that unlike a broken leg where you get an X-ray and you see it’s broken. The diagnosis comes from a combination of fairly common symptoms and a mixture of blood tests. There’s no one definitive test (apart from anti-dna which I understand is more specific, but v expensive). Even then if you’re SLE is less active you can test negative, which doesn’t mean it’s gone away.

This method of diagnosis, means it’s often left to Rheumatologist’s subjective opinions and it isn’t always black and white. Unfortunately this also means diagnosis’s can be removed by rheumatologists who have different opinions, e.g. changing it to Fibromyalgia. This happens a lot and as it’s mostly women we also get tagged as hypochondriacs as we try to get answers. All very frustrating.

I understand that a lot of developments in researching our immune systems are being made. Hopefully there’ll be more investment with COVID (& long COVID) and one day there will be a clear test that gives a diagnosis that can’t be questioned, which will lead to better treatment (physically and emotionally!)

Good luck I really hope you get answers soon.

[panther50]

I found this in a BMJ article. “In most patients with SLE, IgG class anti-dsDNA predominate and seem to be the most specific antibodies for the diagnosis of SLE.” This is the test I had to confirm SLE and these anti-bodies to double stranded DNA reduced as my disease activity and symptoms reduced. I’d probably test negative now, but Lupus sadly (unless drug or virus induced) is a life long condition because basically it’s just your own immune system. I think when consultants don’t have the blood tests to prove SLE but you still have all the symptoms they diagnose fibromyalgia or UCTD (which I think is on the same spectrum as SLE).

[Molly2012 in reply to panther50]

I was told I had fibromyalgia about six years ago, I just can’t believe I feel this ill with it all of the time.

[Wendy39]

Hello Molly

It sounds like you really suffering and getting increasingly frustrated by this situation. So many of us have been here. Too many of us. It’s horrible to feel so ill but not listened to. But we are all here to help when we can and hopefully give you some pointers to get you through.

You definitely need to watch the LUPUS UK live session called Lupus and Blood Tests.

It was with Dr Kaul. Should be able to still watch it. It’s free to register. Go to the Videos on demand section.

95% of lupus patients have a positive ANA. So that means 5% don’t.

You might get a positive ANA but it might turn negative and you never get another. You can still have lupus.

Dr Kaul emphasises that bloods are helpful but you must also consider their findings in your physical examination and the symptoms reported by the patient.

Have you also checked the NICE BSR Guidelines for the Management of Adults with Lupus? This contains lots if helpful information about the diagnosis criteria, treatment and monitoring.

I’ll add the links.

Hope you get some really good responses.

Best wishes

Wendy 💜

[Molly2012 in reply to Wendy39]

Thank you Wendy, I will check it out x

[Hidden]

Hi, my sister had Lupus and didn’t test positive for ANA. Eventually she developed the butterfly rash which confirmed it.