Negative ANA

[ccsilvey]

Hi, I saw a rheumatologist on Wednesday after a v.long wait for a referral. We went through my entire medical history and my current terrible symptoms (the joint pain is agony) and she was pretty convinced on Lupus as I ticked off the majority of the listed criteria. However, my GP who had pre-empted the potential diagnosis, had run some bloods last week and my ANA was negative. Could I still have lupus? And if not, what other illnesses match the same symptoms?! Really wanting answers after years of illness and pain. Thanks

[misty14]

Hi cc silver

It is possible to be diagnosed with ANA negative Lupus. ANA is non specific test for Lupus because it can occur in healthy people and so is only used as a guide by doctors . They look at it in context of other tests and symptoms. If it comes up positive they do further tests as it shows something may be wrong with your immune system. Did your Rheumy start you on treatment for the joint pain?. I hope you feel better soon. X

[ccsilvey in reply to misty14]

No pain relief other than ibuprofen and paracetamol. I have two quite severe neurological pain disorders and they *can* flare with things like codeine, so she was reluctant to prescribe anything stronger. Kinda feel like I'm battling the pain with nothing though...

[misty14 in reply to ccsilvey]

Hi Ccsilvey

Ibuprofen might take the edge off your joint pain as it's an anti- inflammatory. Did your Rheumy say when she would see u again?. It's always worth trying to see them earlier if your unwell via a cancellation as it helps to concentrate minds!. It has for me as I've had to battle for years for recognition!. Another possible way you could be helped as you also have two painful neurological disorders is to go to a Pain Clinic. They have. access to different drugs and treatment strategies and could help all 3 of your conditions. A Pain Clinic referral helped me with nerve pain in back and right leg. I 'm sorry you have so much to deal with and hope I've helped a tiny bit?.X

[Hidden]

Hi - I understand how frustrating it is when bloods come back negative and it feels as though a door is closing. This seems to happen to me all the time now although at first I had a positive rheumatoid factor and my inflammation markers are always somewhere between raised and high.

I believe about 25-30% of people with Rheumatoid Arthritis have negative autoantibodies (ie rheumatoid factor, anti-CCP, ANA etc) and I think about 10-20% of Lupus sufferers are too.

With RA it is important to be diagnosed and put on immune suppressant treatment as soon as possible because of the risk of erosive disease doing damage to joints early on. The trouble with being Seronegative is that it takes longer to get a diagnosis often. There are seronegative types of inflammatory arthritis too such as Psoriatic Arthritis and Ankylosing Spondylitis which need to be ruled out as well. If we do have a seronegative inflammatory disease there is a likelihood that it will show up in our antibodies at some stage as the disease progresses, but this can be after many years.

It is a really good idea to get print outs of your blood test results and learn what they mean if you can. Don't let anyone fob you off on the strength of your blood results

alone.

I hope you can get a diagnosis soon and get onto effective treatment so you feel much better.

[jellynpain in reply to Hidden]

Hi,

I am in the same position. Ana ok, Rheumatoid bloods ok.

I display a huge amount of Lupus symptoms and due to see a Lupus Specialist soon.

Interestingly my recent xray showed and the reported confirmed, arthritis of my c spine, so just proves negative other tests were not reliable.

X

[Hidden in reply to jellynpain]

Not necessarily I am afraid because arthritis isn't usually inflammatory/ autoimmune so doesn't usually show up in the bloods. It is very common to have Osteoarthritis in the cervical spine or lumbar region or anywhere else and not to also have a systemic autommune disease. Although these can be a sign of sero negative inflammatory arthrtis such as PsA or AS too but these usually show up in skin or mri or blood inflammation markers such as ESR and CRP.

Most arthritis is caused by wear and tear and isn't always age related either. Kids can even get it occasionally.

Synovial swelling (hot boggy, fluid filled joints) are what distinguishes inflammatory arthritis from OA. Organ involvement (including skin) is what distinguishes systemic autoimmune diseases from musculoskelital diseases usually.

[Kelfreem]

Your not alone, the same has happened to me. Here is my story, i hope it helps. I had been unwell for a over a year already before I was finally admitted to hospital last year. I already had problems with my heart beating faster and awful chest pain, I had been investigated for this previously, but the cardiologist said everything looked ok, it was just beating too fast and I was having frequent ectopic beats, so they started me on a calcium channel blocker medication. So last year when admitted to hospital, they found some unusual findings. I again had gastritis and stomach erosions, even with the omeprazole that i had been on since 2010 for the same reason,so that was back. They then found I had an inflamed gall bladder, but no stones, and they were unsure why it was inflamed without stones. But most importantly the found I had plural effusions (fluid in the plural cavity of the lungs) on both sides. They were baffled by this and told me my left lung was particularly bad and was under inflated. They said they didn't know what was causing it. At one point they were going to take some of the fluid off and test it, but then they decided not too the risks involved. They eventually after 8 days in hospital said they didn't know what was wrong, but to go home and hopefully the body would re absorb the fluid itself. Well I went home, I couldn't believe how I had gone all this time not knowing how much was really going on in my body.

After this I never got better, a month later I was re-admitted to hospital, by this time I had been referred privately to see a gastroenterologist as my symptoms were not getting better. He had already started to check my anti bodies and started to suspect there was something underlying going on. By this admition to hospital my joints had become very painful. I was seen by a lovely registrar in the night, she suspected lupus and asked if I'd been tested, she organised more blood tests. In the morning the medical consultant came around and told me I was too complicated and it was over his head what was going on with me. He told me to see my gastroenterologist and get a referral to rheumatology. As the pain had settled a little over night, he discharged me. I was left feeling let down again. My bloods started to come back negative to ana and all the other things they tested for. I did have one raised anti body to my liver, but everybody dismissed this, it didn't help that the lab hadn't marked it in red, which I later found out, when no one knew what anti body had been raised!

Anyway I was at home thinking where do I turn now, I was so ill, in so much pain and was off work, by this point I was on oramorph. So I started to research lupus, soon I came across the london lupus and rheumatology centre. I rang them and managed to get a very quick appointment, so off we went from Wales to london. Again the doctor in london like with yourself said he was convinced it was lupus, he ran more tests, but again everything was negative. My official diagnosis is now undifferentiaed connective tissue disease, but he had explained that he believes it to be lupus, and he feels this will eventually show in my bloods as the disease progresses.

I find it all very frustrating, how can your bloods be normal and yet you can be so ill? I'm now on hydroxy and have just been started on azothiaprine, but I've not been too well these last few weeks, and now my thyroid is starting to play up (not enough to treat at present apparently, so their waiting for it to drop more first!!!). So I know how you feel. The only thing I will say though is to keep fighting and keep on at the doctors, as they are often too quick to fob you off, and their understanding of illnesses like this seems to be limited. Keep your chin up and fight, you know your body best xx

[Nikkilama in reply to Kelfreem]

I know this is an old post but I'm so glad I read it! It's 2 in the morning and I'm in such pain and so cold I thought I would look to see if anyone was similar to me. When my ANA came back negative I think docs stopped taking me very seriously. Most of my bloods have only been slightly off. But a month ago I got a CRP of 107. But a week later it was 5.

I've found out since that a rise in CRP peaks at 48 hours after start and then halves each 18 hours after that. So it's pure chance that I went at the right time. It's the only solid evidence through blood tests. No one is joining up the dots even though I've hade Pericarditis and I have chronic Costochondritis and now my arms are weak and I'm losing my fine motor skills. The Rheumatology appointment I was banking all my hopes on was cancelled by the consultant as he decided to make a diagnosis of me by email without even seeing me. He decided I had fibromyalgia. Needless to say I was terribly upset and I'm now trying to go through the process of getting another. Delaying everything by more months. May I ask if you have had any throats trouble?

Mine feels strangled all the time and like something is stuck. I also have pain in my jaws and ears , tinnitus and I'm highly sensitive to all sounds. Making it impossible to listen to my music which is my first love. This seems to be completely discounted by the doctors. Yet on this forum I found plenty of people with sound sensitivity.

I'm glad I read your story as it gave me hope to keep trying. Although I do despair at the battles and not being believed.

[Kelfreem in reply to Nikkilama]

I'm glad this gave you some hope, unfortunately it can be a long lonely road to diagnosis. Even now if I end up being admitted to the local hospitals with a flare up (like this weekend!) They still haven't got a clue how to look after me. Over the years I've realised doctors have a very poor understanding of this condition. The best thing I ever did was to go to the london lupus centre. I honestly believe if it wasn't for them I'd have organ failure by now or maybe even something worse. They have been brilliant, and I'm know the treatment for lupus. I do get lots of sore throats and it's often dry. I also get tinnitus and hearing sensitivity, and have recently been referred to ent for more investigations. There is a possibility that I may now have developed aps, so I'm not well at the moment and am waiting for these tests to come back. I really hope that you get the answers you need soon and especially the treatment you need to make you feel better. Remember you know your body best, sending hugs xx

[Nikkilama in reply to Kelfreem]

It's meant a lot to hear from you. Thank you. I'm so sorry you are ill. Sometimes the pain in my throats scares me as it feels like my wind pipe is being squeezed. Take care

[Kelfreem in reply to Nikkilama]

It is a scary illness, but it's best to stay positive and keep fighting. I think it would be a good idea to get your throat checked out, I wish I could suggest something to help. Make sure you try to get seen by a specialist as its not fair that your feeling so unwell. I hope you get somewhere soon. I'm waiting for a phone call from rheumatology today as I think my kidneys are being attacked, so just waiting now. Good luck with your journey, if you ever need any support I'm here xx

[LupusAdmin3 LUPUS UK]

Hi ccsilvery,

Although i cannot comment on whether you have lupus or not, an ANA test is usually known to cause a positive test for lupus in most cases, however it is not necessarily conclusive. An anti-DNA antibody test is a specific test for lupus, do you know if you are due to have this blood test?

I can send you a free information pack which contains information on the diagnosis of lupus, i can also pop in our factsheet 'Lupus and Associated Conditions' for you. Just send me a private message or an email with your full name and address and i will send one out to you. [e-mail]

Best wishes,

Hayley

LUPUS UK

[ccsilvey in reply to LupusAdmin3]

Thank you, I'll send you a message. Really appreciate it.

I think that blood test was requested by the rheumatologist on Wednesday, yes.

[jellynpain]

Hi,

Re arthritis.....I guess it is important to conclude what type of arthritis. Just to be clear my xray was a nominal check by gp largely in preparation for Lupus specialist. My symptoms are not typical of my current diagnosis, more so leaning towards Lupus (but there are so many autoimmune conditions with similar symptoms).

I have been unwell for four years, with a major impact on my life (not talking a bit of arthritis seen in an xray...if only).

Ccsilvey, it's very frustrating and hard to keep on with testing andnegatives, particularly when actually feeling unwell. Wishing you luck and wellness.

Xx

[ccsilvey]

Thank you all for your replies! They really do help!

A little about me and my symptoms.

I had bursitis in my knee when I was eleven, around the same time I fractured my elbow. A year later, the same for my wrist. Since then, I've had aches in my knees and never been able to run despite an active childhood, playing sports for my school. I've had my wrists in cast more times that I can remember!

For the last few years, every month/2-3 months, I get a sharp stabbing pain in my left side (boob area..). Sometimes it will be an ache, but mostly sharp. I've had scans and xrays, and all come back fine so left undiagnosed.

I regularly have a mouth full of ulcers. Once had a line of them down both sides of my mouth, thought they were scars but most have cleared up. Didn't even realise it could be a symptom so never got it checked!

Since Dec '13 (14 months) I've had frequent night sweats (literally soaked through).

I was diagnosed with Adrenal Insufficiency last June (and my Mom is type 1 diabetic)

My joints are AGONY. I struggle to hold a phone to my ear for longer than a minute or so at the moment. I spend most of the day with a hot water bottle on my knees. My knees and ankles swell.

My hair is falling out although thankfully no bald patches

I have had chronic cluster headache for 9 years (17 years old), I had my first attack when I was 11/12 years old

I have the classic red rash over my face

I've been borderline anaemic since my teens but I've also been veggie since my teens, so it's always been assumed it was that. I eat a lot of spinach now

My GP ran some tests and all came back fine although some of the renal tests were on the high side of normal (one was 49 and the top of range was 50. I am away from home at the moment otherwise I could have told you what test it was, as I asked for a copy). The Rheumatologist requested more bloods.

[tennissenior]

Dear CC,

If it were any autoimmune disease, I imagine the ANA would have been positive. I've had ANA tests for close to 4 years, and they have always come back positive. Maybe you are in some sort of "remission" from an autoimmune disease, but still are experiencing the symptoms?? How many ANA tests have you had? Perhaps they should re-test? Rheumys are known to prescribe steroids as their first choice. I saw 3 or 4 of them over the past 4 years, and all they did was run more and more labs and talk to me about taking steroids. NO GO! I refuse to take them. I take Tramadol for pain. It's like a strong Tylenol. I am on Coumadin, so I am not permitted to take most pain killers as they interact with the Coumadin. My GP prescribed the Tramadol, which I take when the headaches get unbearable.

[ccsilvey in reply to tennissenior]

Hi, as far as I'm aware my first ANA test was done last Wednesday, and I've had another 2 days ago. I can't take steroids because I have adrenal insufficiency, I am already on hydro-cortisone as a replacement, and cannot add more steroids to my dose. Tramadol messes with my neuro conditions (cluster headache and SUNA), unless it is administered via IV and that's just not possible long term

[tennissenior in reply to ccsilvey]

I can't take steroids because my white count is 2.2 - always low fromthe SLE. They also hurt my stomach badly. I'm sorry about the Tramadol. I try not to take pain killers if I can deal with the pain. I only take them when my migraines are bad, and I only take one - not two, as prescribed by the doctor.

[Fennella02 in reply to tennissenior]

Hi tennisenior. I can't agree with your statement that an auto-immune disease would result in a positive ANA. I have had classic disease for 25 years described by my first Rheumatologist as 'textbook' and so much so that she wanted to use photos of me for teaching her med students. ANA and all other antibody assays were negative then as they still are now and have been repeated at intervals throughout. I now see a highly regarded Prof of Rheumatology who agrees auto-immune rheumatological disease (SLE sub phenotype) for which I need Prednisolone, Hydroxychloroquine and Mycophenolate. I am by no means in remission.

[achydunlin]

I have read all these comments with interest. Many years ago two consultants - an immunologist and a dermatologist at separate times said I 'probably had lupus but in all probability the blood tests would be negative' - I've had all the classic symptoms over the years on and off. Now my GP has done ANA blood tests and they are negative and said 'it can't be lupus'. I have the symptoms again now - the only one missing is the butterfly rash (haven't had that in a few years). I also have now been referred to a rheumatologist as my GP thinks there's something 'autoimmune' going on but doesn't know what. It's all very baffling. Good luck all x

[ccsilvey]

Hi all, so 2 years later...

I was diagnosed with Ehlers Danlos Syndrome Hypermobility type, and other than a few physio sessions, I was discharged there and then.

I kept seeing my GP over and over as the pain was ridiculous, but after a while, my pains returned to a 'manageable' level - still there, but I could handle it.

Then, this Spring, I began experiencing night sweats again, fevers that caused my body to react as freezing cold, marks over my face, unexplained itching on my feet and hands, and once again, excruciating joints pain - particularly my ankles, knees, and hips.

I saw an orthopaedic surgeon to rule out a labral tear (hip) which he did, and seeing my pain and other symptoms, referred me to rheumatology once again.

I am now awaiting an appointment to start hydroxychloroquine. The Dr I saw was very thorough and understanding of the frustrating journey so far. He feels that blood work is only one piece if the puzzle, and if we have all the pieces except one, we can still see the picture! Although we cannot say 'Yes, 100% I have lupus', I have enough symptoms (including ones I didn't even realise) to treat my condition as Lupus.

Hope all of you are still fighting hard to hold onto hope <3 stay strong!

[Nikkilama]

Thank you so much. It really helps to talk and it's good of you to want to help. I hope your kidneys are ok! That's so rough.

It's funny, but because I've had pericarditis and got Costochondritis the docs seem to not hear me about my throat. It's weird. I shall try to see a ENT guy. I will keep in touch. Look after yourself.