LUPUS UK
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Can a positive ana turn negative?

I have been ill for around four years. Symptoms include joint and muscle pain, migraines, fatigue, cognitive difficulties, hair loss, burning shins with hair loss, pleurisy twice, arthritis in hands (confirmed dx) wrist pain, hip pain, very bad leg pain especially at night, v. slight redness over nose (like have caught the sun), muscle weakness, shortness of breath on occasions, carpal tunnel in hand (operated on), blurred vision, personality changes (irritability among them). After all these symptoms (of which there are more) I asked my gp to do a ANA test. It came back positive (the only one among many I have had). I finally thought I was getting somewhere. I was referred to rheumatologist who specialises in Lupus. For the first time I felt I was being listened to. He took bloods, ordered lung function tests, eye tests, was checking a recent MRI and echocardiogram (he heard a heart murmur) that I had done when I was referred to the TIA clinic (though now of course I know it was a migraine). I went back this week only for him to say my ANA test is now negative and he has referred me back to the GP - I don't know what to do next.

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Yes, it can, depends on the activity of the disease. I would ask for a repeat test in 4 weeks time, say. ANA is not the single indicator, symptoms have to be taken into account too. Most times doctors focus on blood results only without looking at bigger picture. Alternatively ask for a second opinion from a specialised lupus unit close to where you live. Remind everyone that you still feel ill and until you feel better you'd won't give up. Good luck.

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Thanks for your reply. That's reassuring to know and means I am not going completely insane. Unfortunately I was actually at the specialist lupus clinic which now says I have a negative ANA (hence my despair!) and has referred me back to my GP. It just felt like they couldn't wait to get me out of there once there was a negative ANA - they put the positive one down to an infection (which I didn't have at the time I had the test) What I don't understand is that one of those tests is wrong - but the positive one supports all my symptoms so why have they just dismissed that one outright but accepted the negative one (done 6 months after the first one at the lupus clinic) as the correct result! Also when I saw the consultant the first time he said they would do more blood tests but there was no need to do another ANA as that was already positive. Part of me wonders if he didn't actually do a repeat ANA and has just seen all the other results are negative and forgotten I did actually have a positive result! I had asked for the test initially via my GP because my symptoms supported lupus or an autoimmune disorder and when it came back positive I thought I was finally getting somewhere. The consultant said my liver function test was slightly high so he has referred me for a scan and some physiotherapy for the pain - he thinks that because I am in pain I have poor sleep patterns which in turn causes more pain and I am in a vicious cycle. I could also tell he was going down the depression route by the questions he was asking me - yes I am a bit low but that's because I feel ill all the time and not the other way round. I haven't been depressed for the past four years when all these symptoms began. I have taken stock since my visit last week and decided I will do the physio - can't hurt can it - and take the beta blockers he has recommended for my migraines. As this will all be done through my GP now though so I have decided when I go back to them to get the migraine medication I will ask them to repeat the ANA - that way at least if I have two negative ones I can look at what else I might be suffering from. Though not sure what I will do if it comes back positive again - different consultant maybe?? I trust my instincts and won't give up even if I am labelled a hypochondriac!

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I know how you feel. I'm going through the same thing myself. Saw my PC last week and he said I need to have a sleep study done. I told him I sleep fine at night until I try and roll over. If I roll on my left hip a certain way I wake up from the pain or if I lay on my right arm that hurts but then I go back to sleep. My Rheumatologist told me on my first visit that it was lupus and that I didn't have fibromyalgia then two years later tells me I don't have lupus but I do have fibromyalgia. And I they think I'm the crazy one. Lol.

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Have you been tested for Lyme disease? I had your same issues with a pos ANA. There is no test for lupus. Every symptom you mentioned can be associated with chronic Lyme disease which is an epidemic in this country. It is not only contracted by ticks but also Mosquitos, fleas, horseflies, sexual transmission and can be passed through the placenta. The current testing methods are inadequate given by most physicians. An accurate test can be performed through Igenex labs or your doctor can order a lyme culture test. It would be a good idea to read the facts about it and watch, "under our skin" on YouTube. It's an award winning documentary giving the true facts on this devastating disease.

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Same exact thing happened to me. After two years of Lupus diagnosis

(Originally

tested positive for both, Ana and dsDNA And believe it or not this is very common I have read this here like ten times already. It is a very common fact that lupus patients test ANA and dsDNA negative I think that

Our rheumies really need to check this site, before dismissing us like that!

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I got tested about 10 years ago after an unexplained knee injury and got told I had positive ana and many makers for lupus. I got tested every few months and it continued as positive but nothing was really changing after a few years I discharged myself. Over the course of the next 7 years I would get bouts of fatigue so I couldn’t rly even get up it was like living in a haze of exhaustion and my body weak like I’d had the flu but each time I got my appointment I would be feeling better so I would not push it. It got really bad for a few years I got tested for anemia, thyroid issues everything and nothing ever came back as being wrong. It has progressively gotten better in that my periods are shorter and way less frequent I can feel Normal for maybe 3 months now but then for a week out the blue it will return. I literally do everything I can for my health I was raw vegan for a bit, never smoke drink or anything and work out and do a lot of spiritual work to make sure I’m not stressed etc. When I go through a phase it pushes me to go back to the doctor then by the time I get my referral I’m feeling well so just end up looking like a fraud. After the last spell I decided to just push it to get some kind of diagnosis as when it flares my life is put on hold. I’ve gad to work my life around these spells Being a freelancer etc. even tho I don’t want meds I just want answers so I can manage myself and know what I have. The last appointment my ana has now been negative. I asked the specialist and she won’t do anything and says that it was obviously rly low before and it’s not positive and she’s just fully dismissive. It had obviously at one point been high enough for years for the guy to be convinced I had sle. I am also hyper mobile and I do tick a lot of boxes for elhers danlos which I feel has many cross over symptoms with lupus. I just know something isn’t right but cause my tests are now negative I feel they simply don’t care she said there are times we just don’t get to the bottom of things. I’m 36 and super healthy and active when I’m feeling well I do everything I can for my health and this started really at 26. I don’t believe it’s normal to feel so weak you can barely lift your head and feel exhausted after sleeping 16 hours etc when you have whatever flare ups I’m getting but I’m jus getting fobbed off I guess cause I walk in when I’m feeling well looking all chirpy. It’s frustrating that some specialists just rly don’t seem to care. I’m not saying I defo have either of these things but there should be some further line of enquiry !

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I had a positive ANA 1:320 fine speckle and homogenous and CRP was high and they said mild lupus in 2013....i was on plaquinil and some steroids , but weined myself off after a while casue i thought rhumey jumped to conclusions, and did really well for like 2 years on nothing but vitamin D....Vacation time with daughter in the sun 2017 more than i usually allow, and my fingies ,and elbow and one knee hurt ouchie!!!! I dont go to Rhumey now off the meds, and i have new GP, and she did test me for ANA after a big weird conversation...I have higher inflamation showing on hs-CRP test...and a normal ANA....By the way i thought hs-crp was the wrong kind of CRP test for autoimmune diesease...I thought that was just straight CRP? So, my high ANA has gone missing, and i think i hurt more than before...last time i took some plaquinil was january 2015

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Some new blood tests are showing negative for borderline Ana and dsDNA. Please, Go online and google them all. That is what I did after my test results kept fluctuating.

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Don't give up - my diagnosis route started 2 years ago when I went to my gp because of fatigue. He did blood tests and liver function came up slightly elevated. He did an ultrasound of abdomen but liver etc ok, so he did another blood test and the liver function was again slightly high but now Ana appeared positive. He sent me to a hepatologist who, bless him, did all the tests possible, including liver biopsy. All fine. Meanwhile symptoms escalated so I insisted seeing a cardiologist because by now I had numbness in my left arm and sometimes I could not breathe properly. Cardio tests were fine and brain MRI was fine. By now my hair was starting to fall at an alarming rate, my right side of the abdomen was hurting badly, so I asked the hepatologist about whether there is something wrong with my immune system. By then my ana was negative so he didn't think it necessary. He sent me to check my gallbladder which appeared not to function properly but there was no indication that it would cause the elevated liver function tests. All this time I was also going to see my gp because in the meantime I had a sudden urticaria, my ear was itching, I had night sweats. He was convinced that due to the health worries I have become anxious and overly sensitive to what my body is apparently telling me and started talking to me about the possibility of going on antidepressants. I agreed on condition that we exhaust all the physical stuff before moving on to that. To close the loop and as I kept banging on about my immune system he finally referred me to a rheumatologist. The rest is history.

My point is this: until I am comfortable that I did everything I could to make myself feel better, I will not give up. I enter the consultation room with one single scope, to get that doctor to make me feel better. I don't know how, that is his job. Making me feel better is also his job. And I have no qualms reminding them of it. Nicely, of course.

It is a battle and I am sure we have all been through it and continue to do so each day. Go back to your gp and ask for a repeat test in a month and write to the consultant yourself and ask him to explain why you have these symptoms given the blood results and what he suggests you do about how you feel. He might not write back but he will sure review the file again and hopefully contact you/your gp.

Good luck!

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Again, thank you. That all makes perfect sense. I am afraid I was a bit pathetic in the consultation last week. Firstly because he said my results were negative and I was shocked, secondly because I had tonsilitis and felt very ill. Should have put my foot down a bit more but think I was feeling too weak to fight! Your advice is excellent - I will say I will try the suggested medication etc but only if they continue to look at what might be causing my symptoms. The consultant did say I have the start of osteoarthritis in my hands and possibly elsewhere and that is probably causing the pain, but again, I was therefore surprised he has sent me back to my GP rather than him keeping an eye on me. It also doesn't explain the host of other symptoms either. When I mentioned the hair loss on my shins and the burning sensation I was getting he didn't even look! I had put all my faith in him, I thought he was fantastic at my first consultation and I was finally going to get sorted. But you have given me the inspiration to carry on and I really like the idea of writing to the consultant as well. A small part of me keeps hoping he realises he hasn't been thorough enough though and he will call me - you can live in hope! thanks again.

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I have a positive ANA which is 1:80.. I went to a rhummy and they said it was positive and probably lupus. My gp said i don't need to see a specialist because it was a low positive and probably wrong. I have all the extreme joint and muscle pain and i have gained 65 lbs in a year and have a horrible time healing from injuries. My mother also has lupus. My GP did all thyroid screens and they were all normal so i ensisted on the ANA.. The bloodwork came back negative for ANA when i called the Rhummy to check on bloodwork and they told me that if the antibodies are not active/remission you can have a negative at that time not to stop my plaquenil. I was glad to hear that because that medicine is helping me atleast a little bit. Does any of this make sense to you??

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Same thing happened to me but I just found out it was negative last week while I was hospitalized for 6 days. Please update so I will know what to expect.!

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I often wondered if Plaquenil (or whatever medications you are given) worked and stopped any further inflammation..in other words, you are in remission? Yes, if you still have symptoms then you aren't. Mind you, ANA is non-specific so you can't really depend solely on that x

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Hi my daughter has a diagnosis of Lupus and her ANA test sometimes is positive and sometimes is negative she see's her consultant 2monthly it has changed three times so I would say yes it certainly can you need to make the GP aware of that and mayb get a new consultant/ referral good luck

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Wao. After reading your post, it sounds as though I am reading my own story. After having a fainting spell yesterday and being rushed to the hospital, I came here looking for answers. In 2012, I was given the same dx of a Positive ANA. After visiting the Rheumatologist and having numerous tests ran, though he was certain I had Lupus prior to the lab work, the tests revealed otherwise. I discontined my visits to the Rheumatologists because I too felt as though I was being sent on a wild goose chase. Interestingly, I have the same symptoms as you (besides the red nose) and have also had surgery for what I was told was traumatic carpal tunnel. I will share this with you.. After visiting a Neurologist for the migraines, he suggested I take Vitamin B-2(Riboflavin) and Slow Mag(Magnesium). Until reading your post, I had not made the connection with the migraines. Thank you for sharing. BTW, I am in US actually.

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I am also from the U.S. and I also feel that I was sent on a wild goose chase after test came out negative. Also, I learned to be my own medical advocate. It's the only way we can survive in this "medical jungle."

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Hello melodypond, I went through the same thing. I am still going back and forth with my symptoms. Sometimes I get a positive ANA  test and other times it's negative. The Rheumy said that I have fibromyalgia even though I keep having the same symptoms. The symptoms that i get kick in really bad sometimes and it's more than just widespread pain. If you get a chance could you please let me know how you are doing? If anyone is having similar issues please feel free to reply, thank you.

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I have terrible pain every where except my head or lower back, also bumps in fingers, trouble walking, ongoing burning mouth, nose ulcer? ?? Terrible bilateral hand and arm pain. EMG was negative. Burning pain on feet. Bilateral achy legs. Elbow too. Rash in scalp. Etc. Ana and dsDNA both positive then negative. Now borderline ANA. Some Swollen knuckles in hands. Swollen ankles too.can anyone relate to this?

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My doctor explained to me when mine came back negative that they changed their standards for a positive reading. If it is under a certain number, then they call it negative. 

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That is true!!! Because the health system cannot deal with so many positive ANA patients

( 60+senior citizens tend to test positive for ANA). Also, New standards for test will save HMO money.

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Please get yourself tested for Lyme disease. Your story is mine. I have had the same symptoms as you and always with a positive ANA 15 years later I have tested positive for Lyme disease

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Thank you for getting in touch. I had looked at Lyme disease but know the NHS testing is unreliable. I looked at private but it was very expensive and again not sure how reliable. Can I ask what tests you had? Was it NHS or private? And what treatment are you receiving? I may look into this again. I remember when I was about 13 I had a bullseye type rash about the size of a 10p on my leg which lasted for a couple of months, though not sure if it was too small to be typical tick bite. MP x

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Hi melody, Lyme’s most reliable diagnostic is the presence of a bullseye rash, no matter the size of it. You have Lyme 100% of the time you have the rash. Your symptoms are very common not only with Lyme but with some co-infections a tick can also transmit to you. Treatment for Lyme is VERY different than Lupus, and it will continue to attack your body the longer you wait. I urge you to find a Lyme expert and go to them for comprehensive testing. (I had Lupus and postitive ANA before getting Lyme. Symptoms are very similar).

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Hello. I had NHS testing and now attend infectious disease clinic I stopped going to rheumatology as no one ever came up with anything and I felt like a fraud. It was only after having a mini stroke in December last year that I was tested for Lyme and it came back positive. I was somewhat dumbfounded that I eventually had some sort of answer to all my symptoms and illness.

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