Positive ana then negative?

Hi my ana was positive and recently had I checked privately through medichecks. It's came back negative. Still in the process of trying to get a diagnosis. Has this happened to anyone else and does it still count as it was positive previously?

[whisperit]

Hello Sophie2009

ANA levels can fluctuate; bear in mind the result isn't a Positive/Negative binary, but rather a sliding scale whereby a low level titre is considered negative and a higher level titre is considered positive. In between the two are borderline levels which may be considered more or less significant as markers of a disease process. The actual level will tend to vary with the activity of the autoimmune response, and may go down spontaneously or as a result of treatment. Even a zero result may not necessary mean there is no autoimmune disorder - about 5% of people with SLE have negative ANA results.

When you present to your rheumatologist, they will look at your ANA in the wider context of other symptoms and blood markers. As you probably realise, that's one of the reasons why it can really help if you can take a diary of relevant symptoms to your assessments x

[Hidden in reply to whisperit]

Thank you for the information. I'm not seeing my rheumatologist till may so he will no doubt run more bloods then. As it was Sept i saw him last. I do always take a lost of relevant symptoms. I'm seeing a dermatologist soon for skin issues. So hoping that shows up something

[Librastar]

Hi Sophie2009, yes that happened to me. The first time round I was taken off medication and told I didn’t have lupus after all. Many many years later I was back with a rheumatologist again with blood tests fluctuating between positive and negative and he told me that there are a band of women who are in a grey area with fluctuating tests that show all the symptoms of lupus and well basically have lupus...so now I’ve been on medication for two years and it has helped. I feel lucky to have a gem of a rheumatologist who listens, and takes me seriously. I wish you best of luck with it all.

[Hidden in reply to Librastar]

Hi thanks for the reply. My rheumatologist dismissing most things so I worry now thst when he re does thr tests again in may and they're negative then he'll be more dismissive. Also I don't know the accuracy of the private tests. It said to arrive the following day. Mine were taken Monday 1pm. Didn't arrive at the lab until Thursday at 4pm.

[Librastar in reply to Hidden]

Hi Sophie2009, I’m sorry it is such a worrying time for you and May must seem like a long way away. This is a good place to air your concerns, and I hope give you the help and support you need. Wishing you all the best.

[Hidden in reply to Librastar]

Thank you. Do you have any knowledge on the specific testing for the ana or anti ds dna tests?

[Librastar in reply to Hidden]

I don’t I’m afraid. I think I probably read information from official lupus sites on the internet.

[Hidden in reply to Librastar]

It does say on the medichecks site that samples must arrive the next day.

[Buckley123]

Hi I’m in the same situation they know I have a autoimmune disease my lymph nodes are inflamed I have aches joints and scarring to the brain original doctor thought ms as my mum had it but all my test are negative including lp I see a ms specialist and he thought lupus but all my bloods are negative but I have so many symptoms of lupus so I’m going to lupus center privetly on Friday so I’m pleased in a way to here ana isn’t everything xx

[Hidden in reply to Buckley123]

So sorry to hear what you're going through. What a terrible time you're having. I am only hoping that the private tests might be wrong. I don't know much about it but I think they're supposed to be tested as soon as possible. Not 3 days later.

[Buckley123 in reply to Hidden]

Have no idea hun the only reason I’m this far forward is because after my mum died in July I had a privet mri scan Thats when they found lesionsi have a lot of twitching and limb jolting headache red cheeks imflamwd Lymth noses were picked up on a pet scan with a lot of metabolic activity .. but all my test are negative I’ve had exstensive blood work and lumber test all fine my face swells slightly on one side and I get so tired I feel like im walking slowly I have low iron and bit d. I get a itchy rash with little bumbs but that’s it oh and temperatures.

This all happend two months after mum passed away so could have been stress related she was only 47 when she passed and she had a hell of a hard time x

Have you tried the lupus center I hear they look past the blood results.

I have really bad hips for my age bone marrow changes and bilateral tears and Damage to the hip bone.

This is why I think lupus hoping someone to put it all together as I’m only 28 xxx

[Hidden in reply to Buckley123]

Hi are you in the US? I am in the UK. I am still under the care of a rheumatologist but not seeing him till may. I have a sun allergy but not sure if it's lupus related. It's like constantly feeling like I have the flu. Burning up then freezing cold aswell. Temperature is always normal though. Do you find that aswell? I get back pain and have disc degeneration in my top and bottom spine. I suffer from debilitating fatigue too.

[Buckley123 in reply to Hidden]

I am I love near London in Hillingdon

I get the exact same night time I feel like I have flu coming on next day I’m okay I also have disc degeneration lower 4-5 x

Have you looked into the lupus center xx

[Hidden in reply to Buckley123]

We're a bit similar then. Do you know the cause of the disc degeneration. Mine showed up on an MRI scan. I haven't but it's a bit far away. I stay near Edinburgh.

[Buckley123 in reply to Hidden]

I see yes it is quite far .. no I don’t I also have it in my hips to bit never really found out why I have 3 kids so the doctors fobbed me off about 4 years ago with that as a answer I also have b12 injections x

Do you get a lot of headaches x

[Hidden in reply to Buckley123]

I have started to get headaches lately but not sure if that's from medication or not.

[eekt in reply to Buckley123]

So sorry for the loss of your mum XOX

Willing a speedy diagnosis for you so you have the treatment you need xxx

[Buckley123 in reply to eekt]

Thank you xxx

[Buckley123]

Same I hear it’s quite common with lupus headaches but this is all so stressful you can’t really tell x

I hope you get somewhere soon these autoimmune are difficult to differ

Xx

[Hidden in reply to Buckley123]

I have only been unwell may last year. So that's probably a short time for any diagnosis. I struggled with unbearable heat. Even in winter, windiest open and fan on. Couldn't sleep because of it. Anything similar with you?

[Buckley123]

Yeah I can’t stand the heat x

I have only been ill on and off since September but I went privet because of my mum and that sped it up a lot have you had lp ? X

[Hidden in reply to Buckley123]

I can't regulate my body temperature. It instantly changes from being freezing cold (shivering) to roasting hot. What's IP?

[Buckley123]

Lumber puncher

[Hidden in reply to Buckley123]

No. Haven't had that. What is it?

[Buckley123]

Needle in the spine to draw the fluid off to rest for anti bodies xx

[Hidden in reply to Buckley123]

OK. Sounds painful. The rheumatologist ordered the mri. Unless he suggests that next time I see him.

[Chanpreet_Walia LUPUS UK]

Hi Sophie2009,

Although you have not yet been diagnosed, are you receiving any treatment for your symptoms?

According to The Lupus Encyclopedia, about 20% of people who have SLE will develop a 'negative' ANA during treatment.

An ANA test only confirms whether or not a person has an autoimmune disorder, it does not confirm if a person has lupus.

dsDNA antibodies are very specific for lupus (as they are not typically seen in any other condition or in healthy population) only approximately 60% of people with SLE will test ‘positive’. Therefore if someone is positive for these antibodies, it often means they have lupus, but if they are negative it does not necessarily mean they do not have lupus. For more information, you can read our blog article on ‘getting a diagnosis of lupus’ here: lupusuk.org.uk/getting-diag...

[Buckley123 in reply to Chanpreet_Walia]

Hi do you know what else can be done if all bloods are negative but there are other signs in the body ie brain lesions and lymph nodes inflamed x

[Chanpreet_Walia LUPUS UK in reply to Buckley123]

Hi Buckley123,

Some people may develop criteria sequentially or gradually. In these cases where someone doesn’t meet enough criteria to confirm a diagnosis of lupus they may be termed as having ‘evolving lupus’ or a ‘lupus-like’ condition. Another term that is often used is ‘undifferentiated connective tissue disease (UCTD)’. There are other tests that can be used to help diagnose lupus, have you read our blog article on this? - lupusuk.org.uk/getting-diag...

A skin biopsy of a rash, kidney biopsy, chest x-ray and ECG (electrocardiogram), brain scan as well as a few other procedures can be done to help identify if lupus is the cause of a person’s symptoms. You can learn more about this in our factsheet at lupusuk.org.uk/wp-content/u...

The following information has been taken from The Lupus Encyclopedia regarding lymph node swelling/inflammation:

The medical term for swelling of the lymph nodes is ‘lymphadenopathy’. Since SLE is due to the immune system becoming more active, lymphadenopathy is common in lupus patients. Anywhere from 40% to 50% of SLE patients will have swollen lymph nodes often noticeable in the neck, armpits and groin. In some people, the lymph nodes swell during flares of their lupus, but sometimes they can remain slightly swollen even when the lupus appears to be well controlled. The swelling can also be due to an infection.

Please keep us updated, wishing you all the best.

[Buckley123 in reply to Chanpreet_Walia]

Thank you XX

[Hidden]

No specific treatment. I have painkillers and nifedipine for the reynaud's. No other ttestament yet. I know things can fluctuate. It's frustrating in trying to get a diagnosis.

[eekt]

Hi Sophie, there's a rheumatology patient helpline at the Western General In Edinburgh - 0131 537 1405. Maybe a call would help, especially if you feel unwell?

There's a UK guideline for SLE, and it says positive ANA is only needed once: academic.oup.com/rheumatolo... (Table 6, Initial Assessment - under Immunology)

Keeping posting and let us know how you go! xxx

[Hidden in reply to eekt]

Hi thanks for the information. I will read that.