hi all,
I was diagnosed privately in 2019 with SLE and Sjogrens , but my current GP is querying this, its an ongoing issue and a long story. She has said that if my ANA comes back neg then I don't have lupus or sjorgrens, despite all mys symptoms and being on ongoing treatment for it?
My questions is , can you go between pos and neg?
I previously was tested and it was positive, back in 2019.
any advice welcomed, really struggling to advocate for myself etc.
A x
Hi Foodman500
That must be a difficult and stressful situation, especially as you are on treatment for it.
The short answer is that yes - you can go between positive and negative. Lupus diagnosis is complicated and is done through a combination of your blood tests, symptoms, and medical history, rather than just one test alone. If you have tested positive once before, that should be enough to meet any criteria in any case. You might find these resources helpful for speaking to your GP:
- This talk by Dr Arvind Kaul at our recent Cardiff Information Day talks about the different tests, and mentions ANA and how it can change between positive and negative. He suggests that sometimes this is due to their condition being treated/managed, and it shouldn't be used as a means of monitoring. (I think that bit is fairly close to the start): youtube.com/watch?v=FRAXayz...
- This blog post gives an overview of the process of diagnosis, which includes some information about how some people with lupus test negative on ANA (though most people do test positive): lupusuk.org.uk/getting-diag...
- This blog has some information about what to do if you feel your GP isn't taking your concerns seriously and how to get a second opinion or referral to a different doctor. A little of the information is outdated as CCGs no longer exist, and instead it's your local Integrated Care Board (ICB) who you contact. It also gives some general tips on preparing for your appointment to help you advocate for what you need to most discuss: lupusuk.org.uk/getting-the-...
Hope that is helpful to you, please feel free to get in touch with me if I can expand on any of the above or you have any questions.
Take care,
Debbie
Do you know what consultants look for if they suspect someone is seronegative? Are there other blood tests or scans that indicate Lupus that they look for instead for clues? My blood tests and x-rays were "normal" and the consultant said her "hands were tied", regarding giving me any diagnosis other than Fibromyalgia. The ultrasound showed some inflammation in some toes, but I don't think that will be enough to change her mind. I don't think if the NHS here has right restrictions on diagnosis dependent on that ANA result.
She's hopefully sending me for nailfold capillaroscopy and second opinion, but I am concerned that she's asking this person and they won't be entirely impartial. I haven't been able to see my actual blood test results yet - I did ask for them, but they said they would send with the appointment summary letter (which took about 6 weeks last time!)
Hi FredaN.
In the video I posted above, Arvind talks a little about the kinds of indicators he looks for when he's seeing someone who has tested postive/negative, so that might be worth watching to get a feel for it.
There are classification criteria for lupus - you can find a list on this page on our website: lupusuk.org.uk/diagnosis/ which will give you an idea of the kinds of things they're looking for. You can also search "ACR/EULAR lupus critera" and that should bring up the current system (though there is an update in process). When you google, a lot of it may be behind scientific journal paywalls, but if you look at the image search you can see examples of it for free (just check the date to ensure it's the most recent one).
I hope that helps and you get the answers you need soon
Debbie
Thanks for that Debbie. I think from a quick look at criteria and assuming they've done the correct blood tests, it isn't Lupus. I wasn't certain it was, as there were crossovers into other conditions too. I'm unsure if I can face the second opinion, as it feels like I'm wasting their time and also making a massive fool of myself by pursuing this. And the more they see me upset, the more they are convinced it's Fibromyalgia.
Hi FredaN
First of all - you're not wasting anyone's time and you're not making a fool of yourself. These kinds of conditions are complicated to diagnose, especially because, like you say, a lot of them look like each other & don't have specific tests which makes it even harder to tease apart. It is okay to want a diagnosis of some kind (and to feel confident in it), so that you know what you're working with and so you can access appropriate treatment and care. Sometimes you need a second opinion to get the right diagnosis, or to feel more confident in the one the first opinion gave you. That is okay, and you are not wasting their time.
Unfortunately, quite a few people have had the experience of feeling as though their physical health is dismissed because they are emotional, upset, or anxious in an appointment. I'm sorry that you feel it's happening to you. You may have fibromyalgia, you may not, but that's not related to feeling upset about the confusing and lengthy process of getting a diagnosis. Some people find it helpful to prepare before the appointment by making a list of the symptoms you want to discuss and making it more like an agenda, and that helps give them structure to cope with the emotional side of it. Some people also find it helpful to be open about the fact they feel anxious/upset about the process, though others do not find it helpful. It's about doing what works for you.
If I can be of any help with finding information, please get in touch.
Take care
Debbie
Thank you Debbie. Sorry I didn't reply yesterday and probably sounded a little hacked off (and hijacking someone else's post was perhaps a little insensitive of me too - sorry Foodman500).
I think the start of the week was exhausting - the rheumatology appointment itself, then was awake all night when I had to be at the hospital for 9am the next day for the ultrasound. I'm feeling a little bit more rational now (well, some of the time anyway!) I think speaking to people on here who are in similar positions helps, otherwise it can feel like an incredibly lonely battle.
I'm going to rethink how I describe the pain/other symptoms and of a way to present it more clearly to the person doing the second opinion. I naively thought I should "act dumb" and that showing evidence would reinforce the hypochondriac narrative, but I now think that was probably a mistake. It's hard to judge, as consultants vary so much! I've got nothing to lose by being as prepared as possible anyway. I do also have a referral to a dermatologist and podiatrist, who can hopefully help with the erythromelalgia and foot pain symptoms at least.
If I had a pound for everytime I have heard about negative ANAs.
Your GP is not a lupus expert. A lupus expert is a lupus expert. So, I and many others are walking, talking, creaking and groaning proof that you can have full blown lupus and be ANA negative.
In my opinion it is really unfair of your GP to make you question a diagnosis, especially if given by a specialist.
As for switching between positive and negative ANA, it has never happened to me as I've always been negative but I understand that it has happened to others.
Good luck. Remember that medicine isn't black and white. And you might need to remind your GP that patients don't always fit what's in the text books. Keep pushing and follow your gut feeling.
HEAR, HEAR👏👏👏👏
& me too: as far as we know, have always been sero-negative for all my AIDs…& that’s 70 years of lupus + the usual associated Dx (Sjogrens, vasculitis & scleroderma like manifestations) 💞
Stand your ground. Find out as much information as you can.
What medication are you on?
I fluctuate , sometimes negative, sometimes pos. I think its when I've had a flare, towards the end. Definitely don't test positive at the start.
I'd love to test and see at what point my bloods go wonky , in relation to how unwell I'm feeling.
Take care x
Me too: positive ANA when I was diagnosed, negative ever since, despite the flares. As HappyTulip says, your GP is not a lupus specialist. Ask to be referred to a rheumatologist (and preferably one who dies specialise in auto-immune conditions). Stick to you guns and use all the Lupus resources you can find. Huge good luck!
Without doubt ANA can change between +ve and -ve. I've been tested four times, 3 positive and 1 negative, with homogenous pattern and then nucleolar (twice). Bit like a pick and mix. Consultant was a little bemused by the changing pattern but not by the changing positivity. It happens. I think it would be appropriate to ask the GP politely why they felt the need to question the consultant as you understand that ANA can change. I think the most concerning part is if the GP tries to stop your treatment. You have been given some excellent signposts to increase your knowledge and therefore confidence in discussing your care with this GP. x
Just to add another variable into the mix, drugs such as Plaquenil, if you are taking them, can also make your ana look negative.I saw a poster in my specialist clinic which read' on average, it takes six years to diagnose Lupus.' 😟
Hi Foodman500- just to add to what others are saying, some insurance companies in the US don’t want to pay for repeat ANA tests. My own rheumatologist was surprised when I told him this but I read their guidelines. If it is positive along with the symptoms of lupus there is no need for repeating it since it does not help in management. I am not advocating either way but questioning why a GP would question a negative ANA. Mine is usually negative, which is not uncommon with undifferentiated connective tissue disease.
It is worth fight because you should not be untreated based on negative ANA at this time. Dr. Kaul does a great job of explaining this.
Hope this gets resolved. Best of luck.
Kay
Hi All, thank you so much for the response. its been very validating and helpful. I moved from London and they lost my medical records. MY Gp suggested I try a medication for heavy periods (I have endo too) but was unsure about its use with lupus, so contacted a local rheumatologist for advice, he, without knowing my medical history has said to her, without a positive ANA it can't be lupus or Sjorgrens. I am still under the care of my old rheumatologist in london and will be staying with him, this has been agreed.
Since I wrote my post my Gp has referred me to the local team without my consent and booked me in for a ANA blood test. Which I think I will refuse. I am really struggling to know how to proceed with it all!
also, my London rhumatologist asked her to refer me to a dermotologist and for a hip/ pelvis mri which she hasn't done yet.
Hi Foodman500
I received a Lupus diagnosis from a Consultant Rheumatologist based on (in no particular order) -
1. Clinical presentation, 2. History, 3. Positive ANA
Often ANA is Negative but my symptoms are raging!
You can obtain all your medical notes for yourself, there are ways to do it, you have a right to see them. Might take a while but under The Freedom Of Information Act, they are yours to see/read/obtain. Check on gov.co.uk website …. or ask the ever helpful Debbie Kinsey or Michaela Smith (Health admins on here).
Some hospitals have a particular department (Ministries) if you’re wanting copies of scan/x-ray reports; They send you the actual report plus a CD of the actual images if you require it; All currently all free of charge & quite straightforward to do too.
‘Losing’ them is an absolute fob off & an unacceptable excuse - it all seems a right old muddle with poor you, suffering in the middle!
Patient Advice and Liaison Support (PALS) could be of help to you as a starting point - contact them at any hospital. They’re very helpful, knowledgeable, can point you in the right direction plus they can gather information on your behalf.
If you use the NHS App, there is a lot of patient information held on there. Also, if your GP surgery has on online service (most do), if you’re not already subscribed to it & want to, ask GP reception how to access it. These days, every patient’s entire medical history is being converted to the digital system which the patient can view for themselves.
Everything about you is on there from blood test/scans/x-ray results, to GP consultations, referral letters sent, consultation letters received etc, etc, etc.
I’d want to see some written evidence of conversation between your GP & local Rheumatologist, all sounds a bit strange to me.
Maybe ask to speak with the Practice Manager of your GP surgery who will be able to clarify many things for you.
If you’re more comfortable seeing your old Rheumatologist & travelling, then stick with what’s right for you.
Hope it all sorts it self 🙂
Positive ANA. Getting Rheumatologist referral.
Fourth Positive ANA 
