Hi everyone, I’m a total newb to this. I have just been diagnosed with SLE and am in a bit of a whirl. It came as a shock. I hadn’t even heard of it before I went to the Rheum. Consultant. Anyway, my AnA was positive but only at 1/80. I do have other symptoms which led to the diagnosis. However, as I was leaving the consultant said she would repeat the bloods and sometimes the ANA turns negative in which case she would “retract everything she had said”. I’m not sure what she meant. Does this mean it is possible I do not have SLE if the AnA now comes back negative ? Or can meds / flares affect it ? Sorry if this is really basic stuff but google is not helping and I don’t know whether I can be hopeful or not ! Plus, I don’t know what to tell work or family.
can ANA turn negative? : Hi everyone, I’m a total... - LUPUS UK
can ANA turn negative?
Hi, I'm not diagnosed but yes I think it can. I've been told before I have an on/off positive ANA. Sorry you're in this situation. Hope others can give some advice.
Hi there - sorry you are going down this route - the new “diagnostic’ criteria they are tending to use these days is no ANA then no Lupus but that isn’t true - my ANA went negative early on but still have symptoms albeit a lot easier to control as mine was linked to low thyroid hormone - make sure thyroid happy ! Hope this helps ?
thanks for your replies. It’s all a bit of a mine field. Guess I’ll just have to wait it out.
Keep in touch though and let us know if you can !
Hi. Yes ANA can flit between positive and negative with a titre of 1:80 being a weak positive . 1:40 is negative then it doubles from there. Another reason why she may of said that is because a percentage of the population have a positive ANA without having an AI illness. You could possibly need another positive blood result like DS-DNA or compliments. There is alot of overlap with AI illness too with many having similar symptoms.maybe just tell work they are investigating possible autoimmune illness 🤷♀️ .It's a long journey to diagnosis average is 6 yrs so keep a symptoms diary and keep going. We are here for any queries no matter how basic ...we've been there 🫂 xx
Hi I add 2 positive ana results all the symptoms and my rheumatologist said I don't have lupus cause my ana fluctuated
Positive ANA results alone arnt enough others are needed. I had positive ANA and DS-DNA in 2016 but they were ignored until 2018. They've been negative ever since x
Yes I realise that but I hear that people with lupus ana fluctuate all the time so surely to dismiss lupus because my 2 positive ana fluctuated his wrong
ANA isn't Lupus specific..no test is and because a percentage of the population have positive ANA without AI illness they can't diagnosis on that alone hence the need for other positive tests. There is also alot of overlap with other AI illnesses so positive doesn't necessarily mean Lupus. It is very complex that's why it takes so long to get diagnosed . Some rheumy adopt a wait and see approach . It is hard I know even with my positive results it took 5 years to be diagnosed and that was only after a kidney biopsy revealed class v Lupus nephritis. X
Hi agree - I think there are about 12 diagnostic criteria for Lupus - one of them being ANA positive but it shouldn’t be the case that if you are ANA neg with the rest of the positives that they say it isn’t Lupus and discharge you from clinic !
I agree they shouldn't discharge you they should look at the patient as a whole and continue to investigate and monitor.
Thank you that's what I'm trying to say I'm not saying I have lupus but to dismiss it with all the symptoms and 2 positive ana is ridiculous
Sorry I misunderstood you. X
No problem like many on here that's what the doctors do I'm at the stage now where I'm just fed up and can't be bothered with it all just carry on with painkillers etc till I end up with answers when it happens
It’s awful I feel for you - been there - still there etc., - check your thyroid levels see if there is any cross over - mind you if you think Lupus care is wanting try thyroid issues - horrendous!
I get that .it is especially hard to fight when fatigue is chronic. Granted I was diagnosed before covid but it used to bring out my fiesty side and make me more determined because I knew how I felt. In fairness my GP, rheumy and kidney specialist are great but I had a long running battle with respiratory who said there was no reason for my breathing issues.they have now accepted Lupus is a factor and say it affects the muscles causing my breathing to deteriorate. You will get there 🫂 xx
About 20 years ago a famous London Hospital discharged patients who did not show ANA - some of these patients were very ill - it was disgusting and now seems to be being used as a means to reducing clinic numbers - as with other illnesses EDS - Pernicious Anaemia - Thyroid disease- ‘they’ are altering the criteria for care by any means- it is disgraceful!
I will second the comment that the ANA can fit between pod and neg depending upon the severity of your symptoms. I’m a 69 yo SLE woman living with symptoms since my teens, only diagnosed at 50. Thankfully my ANA was positive then, as without it, I would never have been diagnosed. Other SLE markers will be positive at other times, if your case is mild, like mine.
I would suggest considering getting a different Rheumy, since this one wants to retract her diagnosis if the ANA titre lowers to under 1:80. In my opinion, it is much better to be treated for an AI disease than to live untreated while organs are damaged in the meantime. While my Lupus is mild, I have moderate kidney damage due to it being untreated for so long.
Advocate for yourself. For the meantime, you can tell your family and Bo workers that you are tentatively diagnosed with Lupus, or are being treated for Lupus while the diagnosis is being double checked.
Hi there so agree with your post - I am assuming that AI is adrenal insufficiency ?
In this discussion AI is autoimmmune
Ok thank you for clarifying for me.
AI stands for auto immune
Hello, SLE diagnosis can take some time, however, mine was a very quick diagnosis of just 3 months. AnA 1:640 speckled, Malar rash, sicca, overlap Sojorens. I suffer flares often which can be very debilitating. Hydroxychloroquine helps along with high dose steroids. Azathioprine makes me sick but I'm now being considered for biological infusions. Even when diagnosis is quick, the journey is still long and tiring. My diagnosis was made 18 months ago. I struggle every day. Anyone else like this ?
Hello yes i had two positive Ana tired 1:640 but when i started to receive treatment with plaquenil and high dose steroids it was negative. At first they thought scleroderma but because my skin was not tight they said lupus and myotitis I had all symptoms none of my antibodies were positive and again that could be because they weren’t strong enough or because of treatment but I’m still not well my fatigue is terrible, I’m dizzy, weak, achy, cold, and I have a white rash on my tongue. This is really hard to deal but I hope I as well as everyone in here feel better and have the best supportive doctors. Keep us updated
Hello all I’m super interested in this thread. I was diagnosed in the UK in 2012 with a ds DNA of 133. I’ve had a few positive ANA and high CK results since then but usually my blood is in the normal range.
I now live in Switzerland and my rheumatologist is now saying he doesn’t think I have lupus after all and that my symptoms can be explained by fibromyalgia. He is suggesting I come off my meds. This both terrifies and pleases me. I have ringing in my ears that my GP says is caused by the plaquenil, but the thought of having a relapse of the symptoms I used to have is scary. I feel in limbo and am really not sure what to do.
Hi there - my thyroid was heavily implicated in my Lupus and my fibromyalgia went when I started taking thyroid hormone - when my fibro comes back I know that my thyroid levels are low - my thyroid seems to keep the Lupus symptoms at bay. I hope this helps.
Also to add - I do not take and was never able to take Lupus meds - but I am on steroids for adrenal insufficiency that came about because I was not diagnosed with thyroid problems early enough (took 15 years !)
I also have hastimotos which further muddies the waters. My thyroid was ‘wildly off’ as my GP put it when I was diagnosed so I’ve always assumed the two were linked in some way.
Hashimotos is autoimmune thyroid disease as is b12 deficiency anaemia. They often go hand in hand .I have both 🙄 x
My ANA was 1:320 speckled (which is strongish positive) and local NHS rheumy said I had not got autoimmune disease like Lupus or Sjogrens as walked into the room, presumably because other bloods not positive. They had not discussed symptoms or examined me. They only had blood results from GP at this point.
This was in 2021, and in 2022 I went private as symptoms were not in my head, as so much going wrong, and did not have Fibro (wrong place and wrong symptoms). I was diagnosed with Undifferentiated Connective Tissue Disorder (UCTD). Dentist said to me today I was her first Lupus patient - I think many see 'UCTD with Lupus symptoms' as Lupus.
The 2019 EULAR /ACR SLE Classification Criteria were intended for research NOT for diagnosis.
The NHS is under so much pressure, so presuming this is now being used by management in them (it might not be the consultants we see) to scope caseload, but this does not help us.
So there could be a link with the country we live in and the healthcare system utilised. Maybe we could do a mini-survey as there are folk from all over the globe here.
Nobody should not have to wait for Lupus Nephritis which gives required score of 10 on its own, so positive bloods score not required then.
My feeling is even using the criteria for research, limits what they will learn, as there are different 'sub groups' of patients. Not all are being considered, so how do they unpiece the full breadth of the condition.
At the end of the day, drug research gives the most profit .. and guess drives priorities, more than comparing disease mechanisms and looking more closely at different patterns of disease that we have.
Hoping for change🙏🤞🕊
Figure 1 in this Cureus paper, on right side, lists blood tests.
Under this figure it says some cases will be missed and discusses briefly the case of sero-negative ANA.
Annoying advertisements appear as you scroll, so scroll with care. I found them very irritating, whilst trying to read a paper that was so interesting.
cureus.com/articles/162942-...
Table 2, in the right column, lists other significient checks that are missed by the 2019 Classification criteria.
As SpanielMadLady states, ANYBODY can have a positive ANA, it is not a "Yes/No" to whether or not you have lupus, merely part of the criteria used for diagnostics but unfortunately many Rheumy's do not agree with this (I was diagnosed 30 years ago by a lupus specialist & that is EXACTLY what he told me at the time, that the ANA should only be used as PART of the criteria). In 30 years, my ANA has been what they class as 'negative' more often than not (not sure of the exact numbers as I've never bothered to ask), even when in the middle of a massive flare. The ANA is not actually lupus specific, other AI's can cause a positive ANA, as can infections etc. The dsDNA blood test is more specific to lupus.
Have a read of this and take it to your rheumy if necessary, although I personally disagree with some parts of this due to mine being 'negative' a lot of the time hss.edu/conditions_understa...
I was diagnosed 31 years ago and I struggle more now than ever! x
I had one positive ANA the second time that I had pericarditis. That is when I was referred to my rheumatologist. I have never had one since. I also have all the of the other criteria except for a butterfly rash. It is a really strange condition that I am still learning about. I live in the USA which is where I was diagnosed in 2013. I am originally from the UK. I take plaquenil and have taken a course of steroids once during this time. I wish you all the luck on the world. My rheumatologist also said that some people do not always have a positive ANA and that if you have any 4 symptoms from the 11 diagnostic criteria that you have lupus. I wish you the best of luck.
Thank you all for all of your help and support. I really appreciate it. So I have had some blood results back. I haven’t had ANA but I have had ENA results which are negative. I’m not sure if that now means the ANA is negative or not. My complement C4 is very low. So, I’m none the wiser really. Is it likely they will say I don’t have Lupus now ? Any thoughts ?
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