Positive/Negative ANA: Ok, there seems 2 b a little... - LUPUS UK

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Positive/Negative ANA

Sher78 profile image
38 Replies

Ok, there seems 2 b a little confusion about the ANA blood test with some people saying it DEFINITELY indicates u have lupus & some saying it doesn't & that it's near on impossible 2 have lupus if u have a negative ANA so I've pulled up a couple of links 2 hopefully help :0)

lupus.org/webmodules/webart...

lupus.org/webmodules/webart...

medhelp.org/posts/Fibromyal... (especially 4 Purple-Lou)

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Sher78 profile image
Sher78
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larissa profile image
larissa

Just had a read , very informative , thanks x

Purpletop profile image
Purpletop

Related to ANA, I understand that certain ANA patterns are indicative of a specific autoimmune disease, for example speckled indicates among others the presence of rheumatoid arthritis and lupus, while diffuse/homogenous pattern indicates lupus and MCTD. When one gets overlapping autoimmune diseases, is it that the pattern changes or one of them takes over?

Just curious.

Sher78 profile image
Sher78 in reply toPurpletop

Not an expert on blood tests but from what I understand it all depends on the results of other bloods & the levels of other antibodies & factors as 2 which condition u have, eg, when checking 4 lupus, they generally test 4 anti-DNA (not exclusive 2 lupus), anti-RNP (found in a few different mixed connective tissue diseases) Anti-SM (which r almost EXCLUSIVELY found in lupus patients), ESR (to do with inflammation), CBC (a common test 4 many conditions), anti-dsDNA (used 2 test 4 autoimmune conditions), Lupus Anticoag Antibodies (used 2 check 4 antiphospholipid (aka hughes or 'Sticky Blood') syndrome but does NOT necessarily mean u have it as some meds can affect these results). The anti-SM & anti-dsDNA r the ones that can help determine WHICH autoimmune condition u have, but obviously, if u have many, it can b tricky 2 pinpoint which is the 'primary' condition. They generally tend 2 chuck in Liver & Kidney function too, just 4 good measure ;0) I've probably missed some bits there but I'm sure some1 will pull me up on it ;0)

dgleds profile image
dgleds in reply toSher78

he called lupus on mine the doc, and all I had was 1:320 ANA and finely speckled and homogenous pattern...and elevated CRP at 11. No positives on the other stuff at all...but 4/11 things on the spoken test by him...So far its mild...but he diagnosed it on one call...

dgleds profile image
dgleds in reply todgleds

and a whacky thyroid...that's usually slow

dgleds profile image
dgleds in reply toPurpletop

I just read speckled is seen in normal ANA test

athena.targetwoman.com/thyr...

read down page ANA test

its gotta be wrong

mstr profile image
mstr

Hi, interesting information. I do know though that although they say 20% of 'normal' people can have a positive ana this decreases with the titiers. For example at ana 1/320 only 3% of the population would have this result. I have been 1/640 previously, satisfy 6 of the American College of rheumatology criteria and still diagnosed at UCTD. I also have the nucleolar pattern indicative of polymyositis and systemic sclerosis. Purpletop an interesting question I look forward to knowing about this.

I just don't understand what is the point of having ACR criteria when it is not being used. I plan to ask about this, again, at next appointment.

Sher78 profile image
Sher78 in reply tomstr

Different countries (& even different hospitals) vary on the ACR criteria & the levels of ANA etc, the levels of ANA can vary quite a bit from lab 2 lab in what they class as 'high' or 'low' which I've always found a bit daft but there u go :0/

Purpletop profile image
Purpletop in reply toSher78

Sher, what pattern is your at the moment, if you don't mind my asking? You have overlapping autoimmune diseases, it would be interesting to know. But no probs if you'd rather not give details.

Sher78 profile image
Sher78 in reply toPurpletop

I really don't have the faintest idea honey, all I know is that my complement level is really low (which basically means the lupus is active) but my ANA is negative & my kidney & liver function r 'acceptable', those r the only 1's I was bothered about at last check up. Sorry I couldn't b more help :0( x

mstr profile image
mstr in reply toSher78

Me too, personally I found David Wallace book on lupus very insightful as he has actually had a lot of experience treating lupus patients whereas if the stats are to be believed with lupus, realistically how many lupus patients does a rheumy see during their work? If this is the case and ACR criteria differs then is it any wonder that diagnosis takes some time:(

Sher78 profile image
Sher78 in reply tomstr

Exactly!

Purpletop profile image
Purpletop in reply tomstr

Mine has initially been 1:320 diffuse, now it is 1:160 diffuse. I just forgot to ask whether the pattern wd ever change.

I have never tested positive for ANA and though I have always been anaemic, and had low Wwc count and platlets when I first saw my Rheumy, he is adamant that there is a small proportion of Lupus sufferers that are seronegative to testing. I have felt like (and sometimes still do) worry that it is my head or that I have been wrongly diagnosed, though I have many symptoms. Even when I am inflamed and my Rheumy has seen my swelling, my CRP is often normal! Yet I am being treated.

Interesting to read though, thanks.

Miev profile image
Miev

Hi All ;-)

It´s my first post here....waiting for a diagnosis, but try to look at this from Arthritis &Rheumatism, Vol. 8, August 2012.

Abstract

To identify features of antinuclear antibody (ANA)–HEp-2 test results that discriminate ANA-positive healthy individuals and patients with autoimmune rheumatic diseases (ARDs).

Methods

We sequentially retrieved data on 918 healthy individuals and 153 patients with ARDs after clinical assessment. ANA-positive healthy individuals for whom data were available were reevaluated after 3.6–5.0 years. An ANA–HEp-2 test result was considered positive when a clear ANA pattern was observed at 1:80 dilution in 2 distinct commercial HEp-2 slides by 2 blinded independent observers.

Results

ANAs were present in 118 healthy individuals (12.9%) and 138 patients with ARDs (90.2%). The ANA titer was higher in patients with ARDs than in healthy individuals (P < 0.001). The ANA pattern profile was distinct in the 2 groups. Nuclear homogeneous, nuclear coarse speckled, and nuclear centromeric patterns appeared exclusively in patients with ARDs. The nuclear dense fine speckled pattern occurred only in healthy individuals. The most frequent ANA pattern in both groups was the nuclear fine speckled pattern, which occurred at lower titer in healthy individuals than in patients with ARDs (P < 0.001). Anti–extractable nuclear antigen was present in 1 healthy individual (anti-SSA/Ro) and in 52 patients with ARDs (37.7%). None of the 40 reevaluated healthy individuals developed ARDs, and 29 (72.5%) remained ANA positive. All healthy individuals who became ANA negative had an ANA titer of 1:80 at baseline.

Conclusion

Our findings suggest that the titer, and especially the pattern, on the ANA–HEp-2 test strongly enhances our ability to discriminate ANA-positive healthy individuals and patients with ARDs.

Sher78 profile image
Sher78 in reply toMiev

too much 4 my little brain 2 even comprehend this early lol ;0)

dgleds profile image
dgleds in reply toSher78

ya im more confused now

Sher78 profile image
Sher78

Basically, bloods can b a very big indicator BUT they r not a 'definite' 'yes u do/no u don't have lupus', sometimes it can b very difficult 2 pinpoint the disease (or even WHICH disease) & it's quite possible 2 have neg ANA while in a big flare (as my blood show!) & vice versa. Now if everybody could just agree on the ACR criteria, & how many we should hit 2 b classed as needing further investigation we b on the right track ;0)

mstr profile image
mstr in reply toSher78

You have hit the nail on the head Sher.....all the rheumys/hospitals should work to the exact same ACR criteria. Most say 4 out of the 11 criteria at any one time. Because of this some individuals are receiving a label of lupus whilst others do not. I'm wondering if this is something that one of the speakers at a lupus conference willl address. I plan to ask this too at next appointment. I always come out of my appointment and half way home in the car having a Homer Simpson Doh moment when the reality hits that I should have asked this or that.

Sher so glad we can have these debates on here as it gives me the confience to go forward and want to ask more questions.l I wonder how this simple question re ACR criteria could be addressed nationally too?

Sher78 profile image
Sher78 in reply tomstr

I always go 2 my appointments armed with a list of thing I need 2 discuss & sometimes I even record the appointment on my phone so I can play it back if I'm unsure about what he has said. The thing is, I have raised this issue myself with a Haemo (all off the record, he was NOT treating me but was a colleague from work) who actually said no 1 would ever really listen seriously 2 a patient in regards 2 new info & treatments as docs, the medical council etc think they know best. He was of the same opinion that matters needed 2 b raised regarding treatment etc (4 many medical conditions) but unfortunately, he doubted very much anything not coming from a 'qualified professional' would b taken on board :0/

mstr profile image
mstr in reply toSher78

Yep, I can imagine that would be the response though I will still ask why the acr criteria differs (they can't shoot me for it;)! Good idea re recording the appointment. I tend to take my adult daughter to appointments with me on the premise that two heads are better than one and the discussion we have afterwards is helpful. I do always write questions prior to appointments but at the last one I felt caught off guard as I was so certain that a diagnosis was imminent.......ah well guess things just have to wait that bit longer. Lol I was always useless at biology at school, I never imagined all these years later I would have an understanding of ana, crp, esr, dna etc etc....

Sher78 profile image
Sher78 in reply tomstr

Definitely ask! Maybe if enough of us question it & voice our opinions they'll listen :0/ I think if u're able 2 understand ANA's etc, u certainly aint that shabby at science ;0) When is u're next apt?

mstr profile image
mstr in reply toSher78

Just had one Sher so I guess it will be in a few months. I guess that whatever will unfold will do so in time. In my next life I will definitely take out a BUPA plan too:)

jemmyjemjem profile image
jemmyjemjem

hehehe I thought I would stick my 2 pennies worth in.

They way I understood it was ........ and ANA is not a YES / NO answer for lupus but is used as a tool for helping to identifying the problem.

I also understood that an ANA has different patterns for different auto immune conditions so a positive ANA, basically a titer over 1:320, shows an elevated concentration of anti nuclear antibodies

So some of the more common patterns which should be next to your blood results when you get a copy of them (i always ask for a copy) (mine said 1:320 with a Nucleolar Pattern)

Homogenous (diffuse) - associated with SLE and mixed connective tissue disease

Speckled - associated with SLE, Sjogren syndrome, scleroderma, polymyositis, rheumatoid arthritis, and mixed connective tissue disease

Nucleolar - associated with SLE, scleroderma and polymyositis

Centromere pattern (peripheral) - associated with scleroderma and CREST (Calcinosis, Raynaud's syndrome, Esophogeal dysmotility, Sclerodactyly, Telangiectasia)

So, mine came back as positive with a Nucleolar pattern.

The patterns shouldn't eve overlap, so you will never have an overlap of say peripheral and Nucleolar

So my gp did tests for scleroderma and polymyositis, which are basically inflammatory tests, I can't remember which, but I can get a copy from my gp if anyone would like to know.

These came back negative.

He also repeated my ANA, as he wanted to do a Anti Ds-DNA, which you can only do if the ANA is postive, as the Anti Ds-DNA shows how the anti nuclear antibodies bind themselves to the DNA.

But my ANA xame back negative that time (I was on steroids which can affect the ANA results according to my Rhumie and in a previous post I posted some info about how the Pred affects ANA results). This may explain why some of you have a negative ANA when in a flare, especially if you are taking Pred to help with the flare.

So I took all the results to Rhumie and those with my symptoms got me my diagnosis.

I am sure I have gone off track of the original post, and I am not a professional but have simply printed and written down everything I have been told or have found.

But in a nutshell, No an ANA is not a definitive yes or no, its a tool which should help point in the right direction to an eventual diagnosis.

I have a rhumie appt on the 16th Jan, so I shall ask him for information about testing and then will scan and post it.

Hope I haven't confused the situation further

Jem

xx

Sher78 profile image
Sher78 in reply tojemmyjemjem

exactly jem ;0) What a little research bunny u r, well done :0) x

jemmyjemjem profile image
jemmyjemjem in reply toSher78

I am on top form this morning sher :) ...... I am even tackling my accounts for work ... go me go me go me go me :)

Sher78 profile image
Sher78 in reply tojemmyjemjem

Whoa! That's really good 2 hear x

Purpletop profile image
Purpletop in reply tojemmyjemjem

Great, thank you for this, you answered my question about the overlapping!

Sher78 profile image
Sher78

I think the problem is that maybe, some of us shouldn't read too much in2 the blood work & what our results r IF we have a DEFINITE diagnosis & HAVE had 4 many years, as regardless of the results, it IS handy 2 know but (as my old Rheumy once said 2 me) we know our own bodies, therefore r better equipped 2 know whether we r having a flare & whether our conditions r more active than usual, (especially if u r a veteran lupoid) BUT if u can get u're head around it all, it's very useful if u're able 2 understand u're blood work if u need 2 question a diagnosis or r experiencing new symptoms that may b related 2 1 of the other conditions too.

megs_tom profile image
megs_tom

On my first bloods I had a 'slightly raised' ANA (I think it was that), so was then refered to rheumie. Both my bloods after that have come back negative. The second ones where when I was not in a flare but the third ones I was flaring. I have still not had the full results back from the august bloods (hence why the change of rheumie!) but have appointment with new rheumie tomorrow and I would imagine more bloods done then. I did tell my last rheumie that I was experiencing brain fog and yet he never tested me for 'sticky blood'. xxx

Sher78 profile image
Sher78

'Brain fog' wouldn't necessarily make them think of APS (stick blood) as it's common in lupus too, they would look at a few other factors if they suspected APS such as bad headaches, co-ordination, circulations, previous strokes/DVT's b4 they even CONSIDERED doing a blood test 4 it & even then, headaches etc can be contributed 2 lupus anyway so u can understand why it's so difficult 2 pinpoint which conditions u have as so many symptoms can overlap :0/ In my case, it was BECAUSE of the APS that they discovered the SLE x

jennywren444 profile image
jennywren444

Lupus can be so confusing with regards to blood tests. I have lupus and am being treated with the full whack, azathioprine, plaquenil, steroids, morphine etc etc etc, I've had septicemia from it, and yet have never had a positive ana test. I've had a couple of positive tests for lupus anticoagulant but never consecutively. My rheumatologist said that (as in my case) if you have a strong family history of autoimmune diseases it can sometimes make your body grow used to the antibodies so your blood adjusts itself over the years. Not sure how much is in this but interesting to consider.

Purpletop profile image
Purpletop in reply tojennywren444

This is interesting, so on what basis did they diagnose you, symptoms and family history only?

cynamonspice profile image
cynamonspice

I wish they would diagnos me already, I've been really ill for 4 years, and somewhat ill for many. The problem is, is im a single mum of a 4 year old severely disabled child. He is only mentally disabled. He also has ADHD and Pathological demand avoidance. He never stops and has no danger awareness, so I have to be with him and watch him every second of the day. He also barely sleeps. So I am supposed to look after him completely alone whilst I can barely move, have trouble breathing, feel confused all the time, my body aches, have heart palpitations, and chest pain, rashes on hands and face, the list is endless, but I can't get a diagnosis and have seen loads of Dr's most of which treat me like a loonetic. I have negative ANA each time I go. I really don't know what to do, some days I think I'm going to die. And whilst all this is going on I have to look do everything for a child that cannot do anything and is constantly hyperactive and naughty. I have absolutely no one else to help me, no family or friends, they don't want to know cos of my sons behaviour, so I am now entirely alone. I also have a 14 year old daughter with Aspergers and PDA, but she went to live with her dad as she couldn't cope with her brother anymore :o(

Sher78 profile image
Sher78 in reply tocynamonspice

Sorry 2 hear how tough u have it. U need 2 go back 2 u're Gp & demand 2 b referred 2 a rheumy. As stated previously, a positive/negative ANA does not diagnose u. U need 2 print off the info in the links I've provided at the top of this post & highlight about negative ANA & any of the symptoms u experience. Unfortunately, they think all lupoids r raving mentalists & drama queens most of the time anyway (pre-diagnosis, but then again, even after diagnosis some of them think we make half of the stuff up!) but the added fact that u have kids with disabilities, they'll probably blame a lot of u're problems on the stress of trying 2 deal with everything. Don't let them fob u off my love, go with u're gut. Good luck & let us know how u get on. In the meantime, sending hugs x

cynamonspice profile image
cynamonspice

Thank you Sher78. Yes they blame it all on the stress of looking after my kids, but it's not that. kids don't give you a 3 year low grade temperature, they don't give you rashes and breathing problems, swollen lymph nodes, kidney problems etc etc and the list goes on. They actually think the list of about 20 different symptoms is a coincidence lol, i mean really?? they really think that lol. Seconds thoughts no they don't they just think im a loon, which is even better. I'm so sorry for the rant Sher, I'm just so sick of feeling so bad and being treated like a hypercondriac all the time. I've seen about 5-6 Dr at the same surgery and get the same treatment every time. I am incredibly depressed because of it and cry all the time. I cannot belive that when you feel so bad they make you fight them for any help and make you feel even worse it's a farse.

Thank you so much for your kind words and advice I will try that next week when they crazy lady has to go back for blood tests again lol.

PS I recently bought my own urine dipsticks to proove to them I'm having kidney trouble, can't believe I had to do this, but this will help shut up the looney lady insinuations :o)

x

cynamonspice profile image
cynamonspice

Sher can you pay to see a specialist? If you can I would save every penny I had to go to one.

dgleds profile image
dgleds

Besides lupus,..we ladies can have brain fog from thyroid issues, and menopause, also..post menopause stuff too...I'd love my concentration back ,yes please....

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