How do I get answers?

I need help and advice!!! I have tested positive for lupus and I keep getting told that I probably just carry the antibody and it's just false positive. I have never had a rash so they just come up with other things as to why I feel so horrible. I got really sick last month and have been short of breath, horrible pain about my knees and so so tired. My C-reactive protein was high and my wbc showed I must have an infection. I went to a new internal doctor and she decided I was just have panic attacks because I have anxiety and depression. She lost all focus for what was really wrong. I so mad and frustrated and have no idea where to turn. I have an appointment with a pulmonologist Tuesday for the shortness of breath. Some days I feel really good and then all of a sudden I am beyond miserable. Has anyone on here tested positive 3 times and just been ignored?

32 Replies

  • Iv never had the face rash and I was treated from discovery of the antibodies. Not everyone does get the rash. It tells you that in the literature. Arthritis UK do some wonderful pamphlets- try and get hold of some. Also 60% of lupus patients are photosensitive. I was having some dreadful days before I knew that. Put on 50+ suntan cream and cover up well in the summer.

  • Wow, sounds like you need a new Dr.. go to a rheumatologist, that is what I did. If you need to talk you can call, I know the frustration and pain. old are you?

  • Keep in there.

    Many of us have multiple signs of Lupus in blood as well as clinical signs (photo rash is only one of the markers) and they still don't get the lupus label. Reasons are varying from incompentent doctors to doctors who want to be 110% sure that you have it because with this diagnosis you will have difficulty in buying a house or other big life events.

    You say you carry the antibody. Which antibody is that? If it is ANA that is unfortunately not enough for a lupus diagnosis but with many clinical signs most doctors will give you an UCTD diagnosis.

    If you have specific lupus antibodies you should be investigated further because lupus is very likely.

  • Ask the doctor to check for Ama ( antimitochondrial) Lupus, I believe,, is an autoimmune disease. This will make diagnosis easier. Doctors will treat you for lupus but I doubt they will treat you for the autoimmune condition. I believe autoimmune should be called a disease itself and researchers and Dr will concentrate on it more.

  • I suspect that you don't live in the UK because of the term internist. If so it might be harder for us to advise you on how to get to see a rheumatologist where you are - but you do need to see one of these doctors rather than a general doctor. Re your positive test for Lupus - it's true that a certain percentage of the wider population have a positive ANA. But if you can find the number and pattern of your immunology test results then you can take them to a rheumatologist and learn more about why your doctors keep dismissing it as not part of a connective tissue disease.

    A locum GP told me last week that my number of ANA is found in the healthy population too and suggested that I may have always had this number - but that the DMARDs and steroids (RA and Lupus drugs) suppressed this number and it's come back to my normal level now I'm off these drugs. Thinking about it - she could be right but then what about my symptoms? I find that many doctors have a way of minimising what we are going through and, far from reassuring us, it's actually more agitating than anything! We know our bodies and we know that what we are experiencing is real. So why try and make us feel frauds? If they have knowledge then they need to explain it to us properly. Communication skills training should be compulsory for these people!

    When I looked up my ANA number and pattern on lab tests online I found that my pattern is not commonly found in the general population as she said it was - and my number isn't soaring but it's too high to be dismissed! She did mention Scleroderma so she knew enough so why minimise positive test results in this way first?

    One thing I've learnt over the past five years is that knowledge is power!

  • A few doctors will just turn you off if you suggest an idea about your own condition.

  • I'm so sorry to hear that your doctor is not listening when you see the pulmonologist ask them if your shortness of breath could be lupus related and when the ask questions tell them you have had three test done for lupus which have all come back positive all so it might be worth ask your doctor for a Referral to an rheumatologist for their opinion good luck and I hope you get this sorted

  • As the others have said - you need to get to see a rheumatologist at the very least and preferably one experienced in lupus. I find it difficult to understand a doctor steadfastly ignoring raised CRP and wbcs and putting it down to anxiety!

    Like Twitchytoes, I'm assuming you are in the USA? If you go to the blog Despite Lupus by Sara Gorman she has a list of "great doctors" for lupus patients as well as a lot of other support info. There may be one close to you that you could get to see.

  • I am from the USA (currently living in England). In the USA, as far as I know, it IS the rheumatologist that diagnoses Lupus, Fibromyalgia, and other connective tissue disorders. While I did not get positive Lupus tests, all of my symptoms seem to indicate Lupus. I don't test for Rhematoid arthristis, but she said I had autoimmune arthritis. She had put me on various diff drugs which really didn't seem to help (immunosuppresants etc). So right now I am on Cymbalta which seemed to help quite a lot until this year. Fibromyalgia and MCTD are my diagnosises, but yet one time she said "your lupus." so... I see GP tomorrow because my knees continue to be swollen and burning to see what I should do. Also some days I have enough energy to walk normally and other days I feel like I am barely making it. The heat didn't help (for me if it is above 70F/22C it is hot hot if the sun is out). Hang in there... but please make appointment with your rheumatologist !! I hope you get answers so you can get proper care!! xo

  • There are over 100 possible auto antibodies that can occur in lupus.

    There is no definitive test for lupus and no single antibody that proves someone has lupus.

    There is no false positive for lupus although some lupus patients with certain syndromes test false positive for syphilis.

    CRP will be high with diabetes and sometimes with lupus.

    Most lupus patients have low white cell counts.

    You need to see a rheumatologist to rule lupus in or out. Stop fooling around with these other docs if you think you have lupus.

    As for the doctor who said you "carry" an antibody and that you tested "false positive," demand to see a copy of your labs and have the doctor point out exactly what tests prove this. You are paying for service. If you have insurance, you are paying for service through insurance or through your taxes. Would you accept this kind of vague answer from your auto mechanic?

  • Unfortunately, you are wrong. There are a multitude of tests (and I mean MANY) that can give a verifiable diagnosis of Lupus. MOST Dr's do not perform all of them...........I don't know why. It frustrates me as I am a Dr. with Lupus in the USA.

    I am a retired Neuro-Ophthalmologist in the USA and I had to insist that ALL the tests be performed (13 to be exact) in order to get a concrete diagnosis.

    You are correct in saying many people have an elevated ANA and in most cases it means nothing..........but if elevated and you have symptoms of Lupus, then the 12 other blood tests need to be done as well.

    Dr. S.

  • Hi vaderviper,

    I'm intrigued, just wondering what all 13 tests are?


  • Ignore my question, I've just seen your other comment ☺️

  • I was tested and the result was bordedeline doc started me 15mg prednisolone straight away even tho did not get a positive for lupus....but my doc wasn't happy with the borderline lupus diagnosis so referred me to a rheumatologist. The nhs UK waiting list in Wales was 6 months so i went to a private rheumatologist who saw me immediately and after a good examination and discussion about my symptoms he said i did not have lupus i have polymyalgia rheumatica which affects my muscles which were/are very painful they were extremely painful before the steroids...the symptom i had which pointed to lupus was a butterfly rash which was on my face when i saw the rheumy and on examination he said it was not a rash it was 'rosecea'.....PMR makes you extremely fatiqued and you don't know how you will feel from one day to the next. One day not too bad next day absolutely rotten and all you want to do is sleep of course the steroids add to it but they do take the pain away. The rheumatologist has told me to taper the prednisolone by one a month and see if i can eventually come off them. At the mo im on 10mg ftom 15mg so tapering over next ten months it has to be done slowly......i sincerely hope you can get treated...because obviously you have an autoimmune disease and therefore should be diagnosed positively and get the appropriate treatment........sincere best wishes.....

  • I am shocked by your Dr.'s attitude. I am a retired Dr. in the USA and I learned early on to "listen and HEAR" what my patients were saying. Just because you do not have a 'butterfly' rash' does not mean you do not have Lupus. It is possible you do not have Lupus, but I would want to check to be sure. Here is a list of complaints or symptoms of Lupus (you don't need to have them all to have Lupus):

    Extreme fatigue (tiredness)......................which I had.

    Headaches..................................................which had.

    Painful or swollen joints............................"


    Anemia (low numbers of red blood cells or hemoglobin, or low total blood volume)

    Swelling (edema) in feet, legs, hands, and/or around eyes

    Pain in chest on deep breathing (pleurisy)

    Butterfly-shaped rash across cheeks and nose

    Sun- or light-sensitivity (photosensitivity)

    Hair loss

    Abnormal blood clotting

    Fingers turning white and/or blue when cold (Raynaud’s phenomenon)

    Mouth or nose ulcers

    Some patients will even show signs of anxiety

    There are a multitude of blood tests that can be performed to verify if you do indeed have Lupus.....i'll list them for you:





    CBC want antibodies to all the following (your Dr. will know why):






    Complement proteins are also suggested: Complement proteins are used to determine the inflammation caused by lupus. The suggested complement proteins that should be tested are: CH50, C3 and C4.

    If all these tests are performed you will get a definitive diagnosis of whether you do or do not have Lupus.

    I am a retired Neuro-Ophthalmologist and retired due to a severe case of Lupus. My Rheumatologist was pretty sure I had Lupus, but I insisted all the above tests be performed as I wanted to know for sure. Maybe I carried more weight because I am a Dr. and I know that is not fair...........BUT YOU NEED TO ADVOCATE FOR YOURSELF! You and only you know how how you feel, it is your job to let your Dr. know how bad you feel and you WANT ANSWERS.........and you are entitled to them!

    If I can be of any help, please don't hesitate to email me.

    Dr. S. (in the USA)

  • Dr S - I'm being an opportunist here since you obviously know so much more than many of us non medical people.

    Would it be a relatively low ANA titre that normal, healthy members of the population sometimes carry? I ask because a GP told me that mine was a pattern that 3% of the population would carry regardless of lupus or whatever.

    So I looked it up on labtests online and my result of 1:320 of nucleolar pattern was not really the level or pattern associated with this 3% of carriers it seems. Was this general practitioner right to minimise my positive ANA in this way do you think? Oddly my compliments (C3 and C4) were raised - which she said could just be because I have a yeast infection). I realise this makes Lupus less likely for me. I keep asking about my immunology here and elsewhere but no one seems to know what it signifies.

    And just to clarify for USA members, GPs are UK doctors who know a little about a lot. Consultants are often those who know a lot about a little!

  • I don't know if this is of any help Twitchy...

    Will be interested if Dr S has a reply to your question...

  • Thanks so much 1985mum this is a really useful link. I knew that my ANA points to Scleroderma but I hadn't realised until now, why my raised IgG avid IgA point strongly to primary Sjogren's - which is where my rheumy is presently heading it seems. This makes more sense of my recent lip biopsy now. Many thanks. X

  • I did reply to Twithcy....see below.

  • Twitchytoes, first let me explain that there are people who will show a positive ANA, but have no autoimmune problem. Some people (like myself) will show a NEGATIVE ANA and yet still have Lupus! (approximately 2% of the population will be negative, but could have Lupus). After about 3 years, my ANA became positive. I personally give no credence to just an ANA test. The ANA can be very sensitive for the presence of autoimmune diseases, BUT CAN RESULT IN MANY FALSE POSITIVE RESULTS AS WELL. I insisted on a ds-DNA and multiple other tests........I KNEW SOMETHING WAS WRONG! My ds-DNA came back with a score of 19......anything below 4 is negative. I had it done at a different lab.....came back 18..........HIGHLY POSITIVE FOR LUPUS. After running all the other blood tests, it was concluded I absolutely had Lupus.........all 3 types, Discoid, SLE and CNS (I had more tests to confirm each). I never had a butterfly rash but often got a rash on my neck after being in the sun (never thought anything about it) turns out it was a rash from photosensitivity to the was a Lupus rash [discoid]. In your case I would suggest you start with these blood test:


    ds-DNA......the higher the number over 4, the more likely you have Lupus (assuming you have symptoms of Lupus).









    Lupus is not a disease you play games with, the sooner the treatment, the better off you can be. One of the mainstays of Lupus treatment is Plaquenil (it is an anti malarial) and the reason why is that it has been proven to decrease the chances of a vasculitis and people on the drug tend to live longer. If you have a bad case of Lupus (multiple problems) you may be put on prednisone and possibly an immunosuppressant such as Cellcept or azathioprine or even an anticancer drug such as methotrexate......YOUR RHEUMATOLOGIST WILL KNOW WHAT IS BEST.

    Unfortunately we have our own problems now in the USA with Dr's that are "jack of all trades".........BUT MASTER OF NONE............we call them HOSPITALISTS! When you go to a hospital that is who admits you, if the problem is over his/her head than an Intensivist takes over. My specialty is Neuro-ophthalmology and I can guarantee you that all the hospitalist and intensivists put together can't come close to the knowledge I have in my field. Hospitals are slowly taking over the field of medicine........I find it frightening for future generations.

    Please contact me if I can be of further help.

    Dr. S.

  • Thanks Dr S. I have learned now that I definitely have Primary Sjogrens with possible overlaps.

  • hi. I had a positive ANA that was a 1:160 nuclear when I first became "sick", my crp, esr, d dimer, troponin levels were all high, I have been positive for pleurisy in the past, I also had anemia and protein and blood in my urine, edema in hands/legs/feet/face, and my anti dsdna was a 40. I ended up losing a ton of weight in a short period of time. my rheumatologist dismissed my ANA and antidsdna as false positives and with a psoriasis biopsy that showed positivity said that I had seronegative psoriatic spondylitis which accounted for my fatigue and pain. Not responding well to the biologics, my crp and esr remain elevated but not as much, edema comes and goes, protein and blood in urine come and go.....the ONLY thing that helps me is high doses of prednisone. I made the mistake and went for second opinions and now I have two university rheumatologists scratching their heads. so tired of doctors and long drives to universities. forgot to mention that subsequent testing of ANA went from a 1:160 to a negative twice and now back up to a 1:40 and my patterns have changed. my antidsdna went from a 40 during the ANA 1:160 episode to a negative and then a 19. I also showed lung nodules on a ct scan during my first "sick" episode and a mildly enlarged heart and spleen. I'm not sure what to make of all this but any direction wouild help me.

  • Hi, i can only say your numbers concern me enough that you can not dismiss any of them. Anemia with autoimmune disorders is not uncommon (it is called 'anemia of chronic disease'.......and it can come and go). There is always a reason for protein in the urine (which should not occur) need to be evaluated by a Nephrologist. Your high numbers are a concern and so are the results of your other tests.

    I know it may be costly, but is there any way you can be seen by a 'private practitioner'? You need to be seen by 3 different specialists.........A Nephrologist, Endocronologist and a Rheumatologist. EACH ONE NEEDS TO SEE ALL OF THE TESTS THAT HAVE BEEN PERFORMED.

    I have no idea what is causing the protein in your urine, but it can sometimes be a sign of Lupus must be treated very aggressively. YOU MUST BE VERY AGGRESSIVE AND ASSERTIVE IN FINDING PROPER ANSWERS AND TREATMENT.

    If you were in the USA, I would be glad to help you find the right Dr's and maybe even get you into a teaching hospital (that is where specialist in just about every field on medicine would be involved in an attempt to diagnose what is going on).

    I know they have Medical Schools where you are which are associated with their own you know of any that you could possibly be admitted to for a full evaluation?

    Please let me know if I can be of any help.

    Dr. S.

  • Thank you! I am in the United States, California to be exact and I've been evaluated by rheumatologists at both ucsd scripps and's hard to believe but the ucla Doctor simply wrote me out a ONE year prescription for methotrexate and Enbrel then asked me why I was back to see him less than eight months later (and I KNOW that blood monitoring is important with these drugs which nothing was mentioned by him about that.). I feel at such a loss for answers and as much as my primary doctor has assured me that I have something incredibly inflammatory going on in my body he cannot tell me what it is and why I am responding to high doses of prednisone he gave me for an abcess on my face months ago. Prednisone at the very least made my pain so much more tolerable and for the days I was on it I felt more normalized than I had in over four years. My rheumatologist at ucla won't keep me on prednisone and insists that I can only hope for partial relief from the psoriatic drugs. There's got to be more to this....and there has to be a team of doctors somewhere that can take my history and not just look at the patient in front of them on that particular day. I know that autoimmune diseases do not always unravel right in front of one doctor's eyes on the day of your appointment but it seems to me that most doctors expect that if you're there in front of them on a particular day then your presentation and your blood labs need to scream lupus (or any other ai disease) in order for a diagnosis to be made when the reality is such that symptoms come and go and blood labs are ever changing so no wonder why the average time from disease onset to diagnosis can be years and years...if there was one advocacy issue I would want to promote it would be this one....the medical community needs to make autoimmune detection an urgency in its patients because far too many of us are slowly dying and treatments withheld due to diagnosis difficulty. I've had several rheumatologists even question my psoriasis diagnosis based on the fact that they themselves did not witness an outbreak for themselves. I had to show photos and explain that my palms were biopsied before they even believed me I felt. As a patient and a doctor I am sure you know exactly how frustrating that can be and how I have almost lost all hope that my two kids will even see their mother at their weddings if my inflammation levels are not kept at acceptable ranges.

    I am now crying as I write this and know that my body has waged war on itself and its so frustrating that doctors seemingly wait for a catastrophic manifestation of an autoimmune disease in order to diagnose and/or start treating it aggressively. This is the most reckless disregard for human life and it's unacceptable what insurance companies, health groups, and doctors are doing to autoimmune patients because it is killing us.

  • One of the reasons I retired early was because after 6 years of suffering and complaining I was finally diagnosed with SLE (as well as 4 other autoimmune disorders). Even though I was a Dr. I was also given the run-around....2 Dr's said maybe it was psychosomatic and a 3rd said maybe I was becoming a little hypochondriacal.......that's when I lost myself and let loose. I told him I would be back when he was educated enough to make a diagnosis.........AND I TOLD HIM THAT WOULD BE NEVER. I told him I was a Neuro-Ophthalmologist and had about 4 more years of medical education than he did........MAYBE HE NEEDED MORE. A friend finally referred me to an Internist (of all people) that was specializing in treating people with Lupus as Johns Hopkins Hospital in Maryland. By the 2nd visit I was diagnose with a SEVERE case of Lupus and other A.I. disorders......what a relief to finally get some answers. I was honestly frustrated with myself for not even thinking that I might have an A.I. disorder........but I knew something was wrong.....very wrong. I was put on high doses of prednisone and Mycophenolate (Cellcept)......and gradually lowered my dosage of prednisone (of which I am still on, as well as the Cellcept). I UNDERSTAND YOUR FRUSTRATION.

    And to answer your question, your liver should be monitored about every 1-2 months after you start the med, I am confused by your Dr. giving you a 1 year RX for a med like that.

    You need a complete blood workup..........PERIOD!














    COMPLEMENT PROTEINS....CH50...C3....C4 (and a subset of C4 called C4D.

    The Rheumatologist will know what all the tests are, I think it is time you demand all these tests be taken.......YOU ARE SICK AND TIRED OF BEING SO SICK.....YOU WANT HELP..........NOW!

    I was actually a little more aggressive than that......a lot more.......I DEMANDED, AS A PHYSICIAN TO BE PROPERLY TESTED AND NOT DISMISSED SO EASILY. I FINALLY GOT THE RESULTS!

    Good Luck,

    Dr. S.

  • What would you call a consultant in the US?

  • I think he said these are called Intensivists

  • A 'consultant' in the US is generally referred to as a 'Specialist' as in Rheumatologist, Endocrinologist, Cardiologist etc. If a GP has a concern over something he/ she is not sure of, then you usually will be referred to an individual that is an 'expert' in that field (his/her) specialty. Someone with heart problems would be seen by a Cardiologist, if it were an autoimmune disorder then that would be a Rheumatologist.

    Hope i have answered your question.

    Dr. S.

  • I'm becoming increasingly aware that GPs may (may) know a little about a lot, but I a lot of them don't know the first thing about diagnosis and clinical decision making. So many of us here are in the same boat, fighting for some answers,often resorting to paying for private tests and consultations. I'll also say that I don't think it helps if you're female and "middle aged", and definitely not if you're an ex Healthcare Professional.

  • How do I email you? I'm new here and I don't know the process

  • All you have to do is hit the "reply" button below and I will receive a message in my email. I will definitely get back to you.

  • Hi ddperkins0104,

    Do you know what test you have had for lupus? Is it just your GP doing these tests or have you been seen by a rheumatologist? If you haven't yet been referred to a rheumatologist, then this would be the next step. You'll need further investigations to confirm a lupus diagnosis and be started on some treatment.

    If you would like more information about lupus and how it is diagnosed, we have a free pack which you can request and download from our website at

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