I had a positive ANA test and was referred for an ENA panel. It has come back negative, as well as C3 and C4 being negative too. I’m feeling as bad as ever. Does anyone know what this means or does not mean? I can’t find too much specific information online.
UPDATE - Saw rheumatologist today and he has said with borderline ANA (1:80), pink facial rash, sore joints etc, we cannot rule out mild lupus so I’m going to try the Hydroxychloroquine to see how I get on. Thanks so much for all your advice, I don’t know if I would have had the power to fight without you.
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Wee1kirby
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Hi WeeKirby, Positive ANA plus joint pain, cold hands, GI symptoms and the seizure you had (from your first post) warrants a rheumatology referral...seems like by ordering the ENA tests, the GP was thinking along the lines of Sjorgens, an autoimmune disease but maybe not the right one...check out the LupusUK info on getting diagnosis, and have a look at the BSR guideline for SLE*, see if you recognise yourself in Table 5. It's well-known that pregnancy can trigger autoimmunity
Hope you get somewhere soon, 12 years is a long time to suffer xxx
Thanks so much eek! I’ve seen a rheumatologist but before positive ANA test. I will try to be referred again. I cried today when the ENA was negative because I feel like I just can’t live like this anymore! I really appreciate your response and thanks for remembering from my last post too.
I came across this presentation for GPs* recently, by the immunology lab in Edinburgh...take slide 9 to your GPs and slap them in the face with it...it says positive ANA plus one other relevant symptom is a rheumy referral...and it seems you have a few...it's a terrible thing to be left in the lurch because GPs - or even rheumies - don't know (been there!)...gather strength, be bold and insist on referral...and let us know how you go! xxx
Just saw this post. Thanks so much hun, to be fair they were happy enough to refer to rheumatology before I even had the positive ANA so I think I’m well within my rights to ask for another referral, especially since the amitriptyline isn’t really helping with pain as the rheumatologist had hoped (its for the gastro issues but he was hopeful it would help pain as well). I just need to get my life back as I have little children relying on me and a full on job. I can’t afford to let this win!
Thank you for that. I think I do satisfy the conditions for lupus so maybe the specialist can advise? I’ve had documented low neutrophils for months and then documented leukopenia for two consecutive blood tests and positive ANA, which may be enough for the blood side of things. Hopefully there is light at the end of the tunnel!
Aye, sounds like you need proper SLE meds for a decent quality of life for you and the bairns....so with all the evidence, fair ye well and lang may yer lum reek! Keep posting and let us know how it goes ! xxx
Yes, I agree with EEK that a rheumatology consult would be very helpful. Sounds like, by ordering the ENA, your GP was trying to gather information before making a referral. Are you seeing a neurologist for your seizure? That input could be helpful too. You are clearly feeling unwell. Hope you get clarity soon so that you can be treated.
Seizure was a one off a long time ago when I was also very ill (but with different symptoms!). Not sure if I saw a neurologist but had mri scan as was having awful headaches in the morning and all was ok! Hopefully rheumatology can clear things up.
Oh poo to negative ENA. Was it Dr H who ordered this and if so did he suggest you came back to see him again to talk this through? I know that biopsies of skin and small salivary glands are often used to exclude Lupus and Sjögren’s. And actually the guidelines are same with Sjögren’s as Lupus ie if you can’t diagnose through ENA then histologic diagnosis plus ANA can be next step. Please don’t despair because my ENA panel has always been negative until last year when I had an equivocal anti Th/To. My CTD dr has said this is probably a false positive. Yet I still have a definitive diagnosis of Sjögren’s and before that was misdiagnosed with RA.
Also there are rheumatic diseases such as psoriatic arthritis and ankylosing spondylitis (AS) which are usually seronegative and are therefore often misdiagnosed as OA and/ or Fibromyalgia. Dr H has a special interest in AS so he should be used to seronegativity. Worth following up if your GP won’t refer you to rheumatology on ANA abs symptoms.
Bear in mind that all rheumatic diseases can be seronegative and this just makes diagnosis much harder - doesn’t mean there’s nothing wrong. It almost certainly means that the researchers haven’t yet found the relevant autoantibodies- not that we don’t have these autoimmune diseases! 🤗
Thank you so much Twitchytoes. I was awaiting blood tests before seeing Dr. H, including the ANA. When that came back positive he asked the private GP to do ENA and ANCA (which was also negative, have relative with Wegener’s). I think all I can do is ask to be referred back to him and hope private GP will do it, or even call and see if I can self refer? It’s been a terrible week so far and guess I’m feeling extra sensitive! Hopefully this is just a blip and not a complete set back. Good luck with your appointment with Dr H.
Some links you might find helpful and which galvanise you to persist. I think, if you can afford to, you should definitely go back and see Dr H. He may transfer you to his NHS list on strength of your +ANA and symptoms. Hang in there please and best of luck 🤞🏽
Positive ana and your symptoms sgould be enough to make a proper diagnosed, get you proper meds and get you better. Neg ena doesn't mean much. They usually have about six most common autoantibodies tested there when in Reali there are many more. You can find the list of more than 30 here en.m.wikipedia.org/wiki/Aut...
Thanks for that. It was only four I believe they tested for but not too sure! I’m going to see the rheumatologist as can’t live like this so will update if I have any success! Thanks for the information, really appreciate it.
Im interested to know which four. I believe it should be at least six :). I remember the first time i did this abd rheumatologist was on the phone and he was repeating what he heard. He went through five negatives and we were smiling and then the last one was positive.... :(.
These six are minimum:Ro, La, Sm, RNP, Scl-70 and Jo1. And of course CRP and Igg for inflammation and basic metabolic panel. Without these basics they can't tell much.
Oh maybe it was six! It just said ENA negative in test result. Not sure why I thought four but that’s just probably me 🙈 I’m sorry to hear you were positive for one of the autoimmune conditions and hope it is well managed.
I honestly feel I’m at the point where I can’t bear any more tests as I need some sort of treatment because my quality of life is just so rubbish right now, I can barely stand to look back to last year when I was going on holidays, eating all the delicious food, a total go-getter who did everything and took any opportunity going. Even being ill in the past, it always only lasted a little while and then I got better. Now I can barely drag myself to work and back! Fingers crossed a solution is close at hand!
so you are not on any meds? not even prednisone or plaquenil? what other symptoms do you have? what do you think is wrong with you? sorry to hear that. I was like that too. I was taking a cab to and from work, just to show up. couldn't focus to do good work and got bad reviews that year, but managed not to get fired. after getting on meds I managed to get to a baseline where I could work, focus, and after 10 years didn't get a bad review, and live normally (managing well).
just read your other post. i'm sorry you are not on meds. we have very similar symptoms: pain in small joints, reynauds, extreme fatigue. I have MCTD. for me when in flare I take prednisone in a specific manner (20 mg and tapering to 1) i'm on 1 mg each day, plus plaquenil, and myfortic. everyone is different so I hope your rheumatologist will find a proper cocktail for you. Plaquanil is the best. it removed my small joint pain (I couldn't hold a cup before I started taking it). and no much side effects if you properly take it. good luck and let us know any progress with therapy. you do not need to suffer this way at all. plenty of meds to try what works for you! it's not 1950ies anymore
Thanks so much. It’s so reassuring when people say they have managed to live normally. I find the fatigue, joint pain and stomach issues the worst but I am also getting very dizzy at the moment and keep forgetting things. I was always really good at my job so it’s hard to feel like I’m not able to do my best, through no fault of my own.
The only medication I have is amitriptyline which is take two a night to help with my stomach. They help a bit but my stomach can still be really bad. I end up taking cocodamol or ibuprofen for the pain but it doesn’t really help anymore so I try not to bother. Hopefully I can get some proper medication or at least a diagnosis so I can find a path forward.
My thoughts and prayers are with you, that you may find the needed answers in a confirmed diagnosis to receive the correct treatment.
I too am not on any meds as yet. I have been battling with Lupus symptoms for years. I was even diagnosed with Rheumatic Fever at the age of 7. Now that I have gained knowledge on Lupus, I truly feel I was misdiagnosed.
I recently discovered lesions on my sculp and awaiting biopsy results. However 3 sets of ANA bloods were done and were all positive for Lupus. I have also recently had bad stomach pain, but have been diagnosed with a spastic colon many years ago. What tummy symptoms are you experiencing?
I am totally freaked out at the thought of this sickness being life changing. I have a very pressurised and stressful job. I am frustrated with myslef as I am extremely forgetful, and most days I feel slow. I am a fighter, go getter and lead a very fast paced life. My greatest fear is that my children may need to take care of me.
I am trusting my Faith to get me through this journey.
This LupusUK forum since joining has been extremely informative and helpful. There is great comfort in reading about people who have conquered Lupus and are able to live normal lives.
More so, I am sharing my story with others and hopefully in doing so able to help. Helping others brings so much joy and peace.
I will continue to pray for you and all those going through this journey.
Hi Hun, I don’t know if you saw my update on this post but the rheumatologist, while unable to say it’s definitely lupus, is starting me on the hydroxy to see if it helps, as I simply can’t continue like this. I guess if it’s not lupus (and is fibromyalgia which he thinks is the other possibility), the meds will not do anything and at least I can make necessary lifestyle choices and get good pain relief to continue. Personally I’m far more convinced it’s lupus.
My stomach issues vary but the main ones are urgency, loose stools etc. It’s made me very self conscious and reluctant to eat anything while in public. As a result of this I have lost weight. I’m on amitriptyline for my stomach which the rheumatologist is happy for me to increase and I have ordered something I saw someone mention on here (Celevex I think it was called?) and I have to take a few Imodium each day. I’m hoping over summer when I’m off work I can more seriously commit to the low fodmap diet too but it is quite restrictive.
I hope you start to feel better soon. I too have quite a full on job (teacher) and it is often very difficult to be in work feeling like this and I have def had issues with my memory recently.
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