latest blood work came back and my ANA tested negative? this has never happened. the other markers are still there, as are the same ol' symptoms, but this one went bye bye.
Is this normal? I know the ratio can go up and down but I didn't know it could suddenly come up as negative.
I believe it just means that your medication is working.
I have had ana negative results for 18 months now, i still have mild symptoms (joint pain and skin rashes) but my kidneys are stable for the first time in 25 years so i am classed as in remission, i currently take 200 mg hydroxychloroquine daily. My rhuemy even queried if i had lupus until he realised it had been confirmed with biopsies. Hopefully you are also in remission.
My rheumy said that my inflammatory markers were down but my symptoms were still active so he had to work with my symptoms.
It is not unusual to test negative when disease activity is under control. It doesn't always mean they are gone, just that they are below detectable levels, or the threshold set by the lab.
I heard that they do not go by the ANA level to detect disease activity, does anyone know if this is correct?
As I understand it: my clinic looks across the board at my blood results, comparing these to my baseline stats. If any inflammatory markers etc rise this indicates some sort of disease activity increasing...even if the results are within "normal range". My clinic tends to go by "my normal" not just the official normal.
🍀🍀🍀🍀 coco
You are correct....... not to often however, (about 1-2%) of people will show a negative ANA and could still have a serious autoimmune disorder. On the other hand, many people show a false positive and do NOT have any autoimmune problems.
Dr. S. (in the USA)
can you have an ANA titer of 1280 that would be a false positive?
Thanks Dr. S. This is what I've read. I'm going to ask my doctor if it might be a lab false negative. Realized after posting this that we starting using a new lab this past round and from what I understand there can be measurement differences. For example, the new lab is reading my antihistone anibodies as double(!) what the other lab reported. This doesn't make much sense biochemically, so methinks its a lab thing, not so much my blood per se.
My doc does a full autoimmune/Lupus Panel every two weeks. For me, he specifically looks at: ANA, the Antihistone Antibody and my aPL (coagulant) numbers as those were my blood indicators of the disease. Not everyone has the AA test done, however. I only do because I had a terrible rheumy give me Remicade to treat my spondyloarthritis and it added Drug Induced Lupus on top of my "real" lupus. However, my new doc said he checks every lupus candidate at least once for it since 30-50% of SLE patients have > 1 (that's the positive indicator).
From what I'm reading here in the community, most of us have CBC panels pretty often too. Again, for me, we keep an eye on my leukopenia, anemia and liver enzymes beause those are always out of whack. I track my own heart stuff (blood pressure and resting rate) as those tend to fly out of normal ranges during a bad flare.
Lupus isn't just in the blood is how I understand it. Nobody can be diagnosed with it just through blood tests. You have to meet clinical or outward symptoms as well.
I previously was diagnosed with RA and had a positive Rheumatoid Factor (ANA not checked). But after a few years on Methotrexate and Hydroxy all my antibodies were negative apart from a borderline ANA. Steroids knocked them all negative but then I came off everything and within six months my ANA was clear positive and I was symptomatic once more. Then given lip biopsy and rediagnosed with Sjögren's. My hunch is that my ANA would have been positive at the start if anyone had tested it. I think the meds we take almost certainly skew our antibody tests results but they don't affect my inflammation levels so much. These are generally high unless I'm on steroids.
👍👍👍👍 agreed
I was diagnosed with SLE in 2000. I've had negative ANAs since. Doesn't stop me from getting loads of symptoms, persistent illness & never feeling well. I'm always struggling with something. I don't feel neg ANAs counts for much.
I don't believe that there is any test that accurately tests Lupus. Although my ANA is always positive now, my inflammation markers are never elevated. My daughter has Hashimoto's but once that was detected, her blood work is always fine, despite lots of symptoms. Same with me yet my thryoid has now developed 27 nodules and one is quite large. More research needs to be done with autoimmune disorders. I also have SIBO but it has taken me 20 years to get that diagnosis. Most Rheumy's know nothing except how much their paycheck is. 
hayley3........actually there is a more specific test for lupus..........ds-DNA and Anti-phospholipid Antibodies and the Coombs' Antibody.
Dr. S.
I really don't think they have actually discovered "THE testing" that identifies ALL autoimmune disease, was my point. Which is why so many people struggle to get a diagnosis and suffer while they "wait" for bloodwork to show something. My mom was dx'd with IBS, and was told it was caused by anxiety. Now years later, we have SIBO which is a real functional illness and the real cause of IBS and most likely the cause of autoimmune disease as well. My mom went to her grave thinking she was causing her own illness which I find very sad.
You are absolutely correct. Unfortunately there is no definitive diagnosis for any autoimmune disorder except Sjogrens. In Sjogrens, if the SS-A and SS-B antibodies come back positive, you can make a definitive diagnosis by doing a lip biopsy. Most Dr's do not do it, but I do.
I know how bad it can be to get a diagnosis.......I hate to admit it, but all my sudden fatigue and headaches I attributed to working too many hours - I sometimes worked 8-12 hour days; it never dawned on me that maybe I had an autoimmune problem. Unfortunately after multiple tests and history, I was diagnosed with a severe case of lupus...........all 3 types (discoid, SLE and CNS). When my problems got worse, I went to a friend......she diagnosed it. The one thing you learn in medical school is that any Dr. that has himself as a patient has a fool for a Dr. I am still surprised at myself that it never occurred to me........being male in my 60's (very unusual at that age...........especially being a male.
But, Dr's are human too.
I wish you all the luck!
Dr. S.
Yes, doctors are human too. I personally know several doctors who are human beings like you 😉
also, my understanding is that lupus in cases like yours (adult males, of early middle age onwards) the disease tends be v severe, no?
🍀🍀🍀🍀 coco
Yes it is most severe in men diagnosed in their late 50's or 60's or so. No one knows why. I also have Raynauds, Sjogrens and 2 other autoimmune disorders...........wish I did not, but life is what it is............I deal with it and do what I can when I can. I don't feel sorry for myself, better me than a young woman between the ages of 20-45 (90% of cases). Maybe as a Dr. it is just easier to cope with(?).
Wish you all the best.
Dr. S.
Well done... & thanks. Take care 🍀🌷
Dr S I find it interesting that you say Sjogren's is the one disease that can be definitively diagnosed by autoantibodies and lip biopsy? As you said previously there are equally specific antibodies for Lupus, Scleroderma and RA. If these are positive then it's highly likely that a person will go on to develop these diseases. And regarding imaging, RA can be confirmed by ultrasound of joints, colour of synovial fluid removed from an inflamed joint and very specific erosive damage detected on X-ray. Lupus can be diagnosed by tissue biopsy, Scleroderma can be diagnosed through study of nail fold capillaries.
In fact it is often said that Sjogren's is the connective tissue disease that is most underdiagnosed of all the rheumatic diseases. My bloods were negative for it but because my ANA was positive I was given a lip biopsy which was 100% positive. I know of many who think they have it but never manage to get it officially diagnosed. I still don't know if it's my primary disease or not. There are many reasons why people might have dry eyes and mouth so this too is non specific. I really don't think it is easier to diagnose than any other rheumatic disease.
There are many reasons for dry eyes, especially in women as they get older.......it is simply called 'dry eye syndrome'....not related to any disease........it can be severe enough to eumulte sjogrens.....but a lip biopsy will give a definitive diagnosis. You can do radiographs, imaging, and other test such as blood work and checking fluids, but not are as concrete as for Sjogrens.
When you say lupus can be diagnosed by a tissue biopsy, you are referring I assume to a 'lupus band test'. Unfortunately many will show a negative band test as I did even though I have a very severe case of lupus, unusual but possible. RA is altogether different, it is now relatively easy to diagnose through the various test you mention, but it is not as simple as Sjogrens......a simple lip biopsy will confirm it.
When a patient presents with complaints of severe dry eyes, I order blood tests and do a lip biopsy.........if the biopsy comes back positive.....they absolutely have Sjogrens.
Dr. S.
This is interesting Dr S - thank-you. I queried this only because I use a few closed UK Facebook pages for Sjögren's and there are several men and many women who insist that their negative lip biopsies mean nothing as this is an unreliable and unpleasant procedure. It certainly hasn't been for me- quite the opposite. Although the rheumatologist who instructed it did say mine was an unusually positive result - in fact he couldn't recall the last time he had a patient with such a result. I think my Sjögren's is the equivalent of your Lupus - very multi system and very possibly overlappingwith Scleroderma. I was originally diagnosed with RA but it proved non-erosive and probably was Sjögren's mimicking RA instead. Certainly my GI symptoms, Raynauds, kidneys, autonomic nervous system etc all give me as much grief as my eyes - but my mouth is becoming a real problem too just now. So dry I wake with tongue glued to my soft palet.
My husband care works for the elderly and says that his male clients are as dry eyed as the women if not more so. He observed this a few years ago when trying to help me find the most effective eye drops!
Believe it or not I have most the problems you complain of plus others...so I truly understand your suffering; that's why I had to retire early. Being a retired Neuro-Ophthalmologist, I saw many cases of severe dry eye, trust me, it is definitely more common in women...don't know why though. The tears are actually composed of 3 different layers (mucin, oil and lacrimal fluid) and every eye drop will usually only replace one of those layers. Unfortunately the best treatment (if caused by Sjogrens or Lupus) is a drop that has potent anti inflammatory properties, such as Restasis or the newer drop Xiidra.........I prefer Restasis because Xiidra is a little too viscous for me and can burn a little longer than Restasis when initially put in the eye. I always started the patient on Restasis + Lotomax (a potent steroid gel drop) for 1 week to help cut down on the inflammatory process. I used Lotomax because it has a less propensity for increasing eye pressure. [you would have to stay on Restasis or Xiidra the rest of your life].
Another cause for severe dry eyes may not be due to a lack of tear production but rather MGD (meibomein gland dysfunction). The tears wet the eyes and the oil secreted by the meibomian glands helps to protect them from evaporating.
If you have MGD, Restasis will work along with putting a warm compress over the eyelids everyday to help keep the glands open. The actual problem can be determined by any Ophthalmologist or Optometrist.
If I can be of further help, please let me know.
Dr. S.
P.S. One of my son's is a practicing Rheumatologist, when I am not sure about autoimmune disorders I ask him.
Brilliant having your input here Dr S - and even better that your son is a practicing rheumatologist!
My eyes aren't actually my biggest problem at all although they are affected. I posted recently showing a letter my new optometrist sent to my GP for you interest. I have to go now as travelling to our new home by ferry and road all day tomorrow and I, having many issues with typing presently because of sore finger tips. But the main reason I need to go is because my heated eye pads await as my daily therapy for my MGD!
Take care and thanks again for your extremely knowledgeable replies - we are lucky to have you here. Twitchy
Thank you for your kind remarks. I read the site you referred me to: healthunlocked.com/lupusuk/...
His/her report was concise and detailed. It is exactly what I would expect from an Optometrist. When I was teaching in Medical School, I also taught the exact same courses (ocular anatomy and pathology) to students at the nearby Optometry School. As I said in my statement to you....."any Optometrist or Ophthalmologist" would be able to diagnose and treat the problem.
Wishing you all the best.
Dr. S.
I don't know how expensive Restasis is in the UK (VERY expensive in the USA, about $465/month - probably far less expensive in the UK).
My point is that if Restasis is successful, you may not need any other drops or night time lubricant. I had my patients use a heated gel pad over the eyes twice daily just prior to putting in the drops - USUALLY no other lubricating drops are needed, but not always. However, if you are content with what is being done and it is effective for you, my philosophy is "don't fix what isn't broken"!
Glad you found the letter up to scratch. I'm sure any optometrist should be able to spot these various types of eye disease and articulate all this to their patients, but most don't sadly. My previous ones certainly didn't.
Restasis isn't usually prescribed for all but the worst cases here in UK Dr S. He told me that he felt I don't need it yet but if and when I do then he will have to refer me to an opthamologist in the hospital because only they can prescribe it.
Take care, Twitchy
I am surprised that only an Ophthalmologist can prescribe it.......here in the U.S. an Optometrist can legally prescribe it as well. It took the USA a while to acknowledge that Optometrists are just as qualified to diagnose AND treat diseases of the eye. I just assumed it was the same in the UK. It is unfortunate because it makes things a little more difficult and time consuming for the patient. I know your health care system is different than ours.....it may soon be better that what we presently have. I hate expressing my political views, but I will because I am outspoken especially if I feel it is detrimental to my patients. The USA used to be a Republic, now we have all billionaires running our great country (we now have a damn Plutocracy controlling everything in our country starting with our VERY low respected President Trump and his billionaire cabinet and chiefs of staff). The poor, indigent, disabled, middle class and the elderly are going to be financially annihilated by this President and our Republican controlled Congress when it comes to health care.........MAY GOD HELP US! Our idiot of a President is alienating our allies while praising our biggest adversary........PUTIN AND RUSSIA. DISTRESSING TO SAY THE LEAST TO MOST AMERICANS!
Dr.S
P.S. Sorry, I never discuss politics and certainly should never rant and rave as I did, but I am disgusted with what is happening in our country. Most Americans want to go back to the COMMON PEOPLE RUNNING OUR COUNTRY AND DO WHAT IS BEST FOR THE VAST MAJORITY, NOT WHAT IS BEST FOR JUST THE WEALTHY. Unfortunately the wealthy now run, control and own over 80% of our country's net worth. How so very sad.
Things are falling apart here too with the NHS. I don't blame you for ranting - it must be insufferable and a deep source of embarrassment too. But yes I agree best avoid mentioning here as we are meant to remain apolitucal.
Anyway yes Restasis can absolutely only be prescribed by a consultant opthamologist here. Apart from anything else the NHS would be paying for it and even a very experienced optometrist from a research background such as mine would have to refer me. I think he wants to keep me to himself for now and this suits me because he's extremely knowledgeable about autoimmunity as his wife has MCTD and I trust him to know if and when I would meet the criteria for Restasis. Take care.
Twitchy
If I can ever be of any help to you or you Optometrist, please don't hesitate to email me......have plenty of time. I see indigent patients only 2 half days a week and consult on other days. Fully retired due to my autoimmune disorders....just try to work when I am able.
Dr. S.
Negative, positive, negative respectively. so, he used the ANA + Antihistone + Antiphospholipid Antibodies as the "blood evidence" and combined it with the leukopenia. Then we included the rash, pancreatic insufficiency, early airway disease (can't remember what the actual term for that is), three positive EEGs (slow way activity), the TLE seizures, IBD and the distal joint pain.
Interestingly, he excluded my big joint (hip, knee, shoulders) pain and tendonitis, inflammatory arthritis and positive MRI (soft tissue and bone edema in SI area/pelvis) and attributed that to a second disease that he calls Spondylitis. However sometimes he uses PsA so I get a little confused which is which or if they are the same. To make things even more fun, I have psoriasis. Which, honestly, at this point I could care less about! It's the least troublesome of them all despite being the ugliest!
About 1-2% of people will show a negative ANA and still have 1 or more autoimmune disorders (most Docs are not aware of this). The answer to your question is yes, it is possible to suddenly show a negative ANA..........unusual but I have seen it happen.
Dr. S. (in the USA)
What about those like me: infant onset SLE diagnosed & treated in my country of birth, but I wasn't told. I moved to the uk at 21. The NHS inherited me unaware of the lupus...I was treated in emergencies & given useless daily prescription NSAIDs + analgesics for decades...developing early onset hypogammaglobulinaemia...
the idea is that I am living with a kind of premature "immunoscenescence" due to immune dysfunction going without appropriate daily prescription combined therapy treatments for decades. My SLE is considered "moderate", I'm on daily hydroxy + myco + pred, and symptoms flare if this is reduced. Yet I've been ANA neg since this lupus treatment finally started 6 years ago, seems I'm one of that 1-2%. I can't make antibodies in response to all types of pneumonia vaccine either....and am severely deficient in pneumonia antibodies full stop.
consultants say I would've tested ANA positive over the years had my primary carers, Pain Consultant, neurologists or ortho surgeons suspected & run tests...but they didn't until my mid 50s...an unusual case, but immunology & rheumatology consultants at my internationally famous NHS university hospital are looking at things this way. I'd be very grateful for your thoughts...private message me if you prefer. Thanks, coco
thanks everyone for your replies! we did change my rx regimine so perhaps remission is on its way. my rash is def better, however i attibuted that to bring much more strict about sun protection. still waiting for the other tests and scans (the SpA) to improve. liver is looking better and heart is improving. fingers crossed!!
My Doctors have tested ANA twice only. The first time to get a referral and the second time a few months later to check it was still positive and not a once off. She no longer tests for it as it creates confusion. Same for the antiphospholipid antibodies. Once I had the 2 positive tests 12 weeks apart and a diagnosis of APS made, she no longer tests for it.
This was an interesting piece I found about ANA once when looking up mine which was 1:320 nucleolar pattern. It explains about the different labs and methods and how much the ANA results can differ and why
sclerodermainfo.org/changes...
Not going to lie, I'm going to have to read this one a couple times! Great info and the detail is helpful.
Something else you said caught my attention and haven't seen much about here: the pattern.
Mine is speckled and yours nucleolar. From what researched sometime pattern is just as telling as level. Would you agree?
I've heard that too about the patterns. First up I was just homogenous. The next test came up both homogenous and speckled.
I don't know I'm afraid. I asked a gp what pattern mine was and she looked it up and said it was more unusual and could indicate Scleroderma. The rheum registrar said that 30% of those with this rare disease are negative for the more specific antibodies but have a nucleolar pattern to their ANA usually.
I think this nucleolar pattern is less likely to change in future tests than the other patterns once it has shown positive. My lip biopsy was 100% positive for Sjogren's anyway but I do wonder if it's primary or whether I haven't actually got Scleroderma of some sort underlying. I do have many, but not all of the symptoms, and am being tested with nailfold capilliary test in 4 weeks time. I think it's very unusual to have a sudden late onset Raynauds like mine but hopefully I'm wrong.
Vadeviper/Dr S may answer your question about patterns hopefully.
My ANA is also now negative. My lupus is in remission - hurray! It was positive for nearly 3 years of 6-monthly testing, and then it went negative, and my ESR has also gone down to normal levels. But unfortunately my symptoms have continued to worsen, only now I have a new diagnosis of Fibromyalgia. The joint pain is now less inside the joints and now more around the joints and soft tissues - nerve tendons etc. So unfortunately, getting Lupus led to me developing Fibromyalgia.
Yes, in 2013 every doctor I went to said that I didn't have Lupus after looking at my blood work. It was hilarious to me because they didn't see me when I was first diagnosed and I had sores, I couldn't wear shoes, hair fell out, lungs heart and kidney were failing all at once. I could go on! However, I knew my body and I knew it was still active or I wouldn't have been in the hospital every other month. It wasn't until 2015 when it showed up again. But don't fret and don't let them make you feel like its all in your head like my ex told me in 2013!
Hi
I started a lupus drug trial in December. As part of the screening I have like 20 + vials of blood taken. They were sent to a lab in Sweden as all people on trial over the world have their blood tested in the exact same lab in Sweden to make sure the same kits and methods are used.
At the same time guys hospital also took some extra blood to retest some of theirs.
The results were astounding. According to guys my ANA was now negative and my Anti SM and RNP were still positive.
According to the lab in Sweden my ANA has actually increased to 1/320 but my Anti Sm and RNP were negative!
I was told different labs and different kits can give different results. I am still astounded as to how different they are! And my lupus was in flare at the time.
L x
I give u
It’s baaaack. #bummer
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