Lupus and Testing: Questions Answered

2.6 Blog

On November 6, Hospital for Special Surgery and the S.L.E. Lupus Foundation hosted a Facebook chat on Lupus and General Health. Participants asked many questions, but our room full of experts could only answer as much as they could during the one-hour, live event. We categorized the remaining questions, and will run a series of our experts answers over the next month. For our fourth installment, rheumatologists Dr. Michael Lockshin, Dr. Kyriakos Kirou, Dr. Alana Levine, and Dr. Jane Salmon and rheumatology nurse practitioner Monica Richey answer questions about testing. Read the others in this series: medication, joint pain, and pregnancy.

The information provided is for informational and educational purposes, and doesn’t constitute medical or health advice for any individual problem. Please consult with your health care providers for any health problem and/or prior to starting any new medication or changing or discontinuing any medication you have been prescribed. This chat is not intended to create a doctor-patient relationship, or any other duty, between you and any member of the HSS interdisciplinary team or the S.L.E. Lupus Foundation.

Q1. Is there another way to see if all the signs you have point towards lupus other than a blood test?

Dr. Michael Lockshin: The diagnosis of lupus is never made by blood test alone, since some people have positive blood tests but no disease. To make a diagnosis of lupus, you need to have both symptoms and, generally, positive blood tests. It is very rare for someone to have a diagnosis of lupus that has completely negative blood tests- not just one test but a whole panel of them. You can make a diagnosis of lupus on the basis of the skin rash or certain types of kidney disease even if blood tests are negative.

Q2. I was diagnosed with an overlapping connective tissue disease together with a spinal disorder, Hashimoto’s disease, Raynaud’s, endometriosis, polycystic disease, RA, and migraines to name a few. Will I ever have a negative ANA? Also, I still have no energy and bad pain (I am on a lot of medicine). If it wasn’t for ADD medication, I’d never get out of bed. This all worsened after my lower back was reconstructed.

Dr. Kyriakos Kirou: Once the ANA test is positive, it usually remains positive. Therefore, we do not retest for ANA once we have secured a diagnosis of lupus or a related connective tissue disease. Fatigue or low energy is one of the more difficult symptoms to control. Fatigue also may be due to co-existing fibromyalgia which needs a different treatment.

Q3. I have had 6 positive ANAs and some positive reactions on the lupus profiles and some negatives. My symptoms this year alone have been a slow heart rate that hospitalized me, orbital inflammatory disease with trace optic neuritis, extreme fatigue, hair loss, unexplained bruising, confusion, memory problems, pain in my hip, wrist, joints, and thumb knuckle, lung problems, urinary tract infections, and depression. I have been put on Plaquenil, Mobic, Cymbalta, pain meds, muscle relaxer, and Trazodone yet none of my specialists have yet said yes you have SLE. I now have a drooping eyelid on my left eye and the left side of my face feels different than the right just slightly. I am at wits end for someone just to say I’m not crazy. Not to mention I have lost 49 pounds in 6 months without trying.

Dr. Kyriakos Kirou: Unfortunately, the diagnosis of SLE may be difficult in cases that are not very typical for the disease such as in your case. The ANA test may be positive in other autoimmune conditions or even sometimes in normal people and therefore it may not be very helpful. A positive and relatively high level anti-DNA test is usually more specific for SLE compared to other autoimmune diseases.

Q4. Hi, I was diagnosed with Lupus and Sjogrens 4 years ago. I have changed my rheumatologist in the past year. She just told me she believes I have Sjogrens and Fibromyalgia. She says Sjogrens is a close cousin of lupus. She does not know of my total medical history. My old doctor did have access to my tital medical history and was able to diagnose me with definitely having lupus. I did the lupus check online and I have almost all of the symptoms still. I also had a positive ANA for the past 4 years of multiple testing. I do not agree with her saying that I do not have lupus. I do not want my lupus symptoms to go untreated. What should I do?

Dr. Alana Levine: It sounds like your old and new rheumatologists have different opinions about what to call your autoimmune disease. I can see how this would be frustrating. Have you tried to explain your concerns to your new rheumatologist? It might be helpful to ask her why she feels you do not have lupus. Is it that your symptoms are now different now than in the past? Your new doctor may have a reason for her different opinion, or maybe, as you mentioned, she doesn’t have all of the information from your history that would help her to fully understand your case. A detailed discussion with your new doctor might clear up some of these issues.

Q5. My mother just passed away with Lupus and my uncle and my cousin also have lupus. I just had my first ANA that was speckled. My other previous ones had all been negative. I already have the ankles that swell constantly, the joint pain, the low blood counts, low D, low B12, and I’m throwing protein into the urine. The rheumatologists all say not lupus, but my family doctor says it’s the beginning stages. I’m confused. Are there any other tests I should have?

Dr. Alana Levine: I’m so sorry to hear about your mother’s passing. It does sound like you have a strong family history of lupus as well as some symptoms that can be seen in lupus patients. It can be very frustrating if your doctors have different opinions about what’s going on with you. Have you asked your doctors to speak to each other about why they have different views of your diagnosis? It would help if together the three of you could figure out what is causing all of these symptoms- whether it’s lupus or another condition.

Q6. I have many symptoms of SLE and RA, but my ANA came back negative. The rheumatologist told me that that means that I have neither based solely on that test. Is that true? Should I see a different rheumatologist to get a second opinion?

Dr. Jane Salmon: Most patients with SLE have positive ANA tests, but they rarely can be negative. There are also certain blood tests (rheumatoid factor and anti-CCP) that are positive in most patients with RA, but there are exceptions here too.

Q7. Is there a connection between having a low MPV and lupus? My platelet count is normal. Also, I have symptoms from low MPV, but the doctors aren?t treating it. A bone marrow biopsy has been recommended numerous times, but it has not been done. How serious is this?

Monica Richey: Are your platelet numbers also low? In some cases, it can be related to thrombocytopenia, which is also seen with SLE treatment for low platelet count is usually IVIG. A bone marrow would be a good thing to see if the low MPV is related to SLE, they can look at the cellular level and tell what the cause is, that way it can be treated properly.

*If you wish to seek consultation at HSS, please call our Physician Referral Service at 877-606-1555 for further assistance.*

Dr. Michael D. Lockshin, is Director of the Barbara Volcker Center for Women and Rheumatic Disease at Hospital for Special Surgery. He is the author of nearly 300 research papers, book chapters, and books, most on the topic of lupus, pregnancy, antiphospholipid syndrome and sex differences in disease.







Dr. Kyriakos Kirou is a rheumatologist at Hospital for Special Surgery and is Clinical Co-Director at the Mary Kirkland Center for Lupus Care at Hospital for Special Surgery. He has a special interest in the research and treatment of systemic autoimmune rheumatic diseases, such as systemic lupus erythematosus.





Dr. Alana B. Levine is a rheumatologist at Hospital for Special Surgery. She specializes in rheumatic autoimmune diseases including systemic lupus erythematosus, antiphospholipid syndrome, undifferentiated connective tissue disease and rheumatoid arthritis.







Dr. Jane Salmon is Co-Director of the Mary Kirkland Center for Lupus Research, Director of the SLE APS Center of Excellence, Director of the FOCIS Center of Excellence, and Director of the Lupus Registry and Repository. Dr. Salmon’s research has focused on elucidating mechanisms of tissue injury in lupus and other autoimmune diseases. Her basic and clinical studies have expanded our understanding of pregnancy loss and organ damage in SLE and the determinants of disease outcome in lupus patients with nephritis, pregnancy, and cardiovascular disease.






Monica Richey, MSN, ANP-BC/GNP, serves as the nurse coordinator for both the Mary Kirkland Center for Lupus Care and the Cardiovascular Disease Prevention Program. Ms. Richey’s professional interests include cardiovascular disease in systemic autoimmune diseases and patient education.

The information provided in this blog by HSS and our affiliated physicians is for general informational and educational purposes, and should not be considered medical advice for any individual problem you may have. This information is not a substitute for the professional judgment of a qualified health care provider who is familiar with the unique facts about your condition and medical history. You should always consult your health care provider prior to starting any new treatment, or terminating or changing any ongoing treatment. Every post on this blog is the opinion of the author and may not reflect the official position of HSS. Please contact us if we can be helpful in answering any questions or to arrange for a visit or consult.


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  1. Hello, I’ll try to keep it short. It all started 8 months ago with a face rash. Found out I had contact dermatitis. I removed allergens but was still having rash problems. Doctor did a workup and ANA came back 1:160. Rheumatologist said ANA positive but negative for everything else. Said it could be because of my hashimoto’s. She said no meds were needed now as I don’t have enough symptoms to warrant giving meds. My dermatologist said that he wants to put me on hydroxychloroquine because of the face rash. Although also said I don’t have lupus. I’m a bit unsure whether I should take the medicine. The rash is uncomfortable but worried about taking meds and side effects.

    1. Hi Danielle — It is very common for people with Hashimoto thyroiditis to have a positive antinuclear antibody test, so that part of the information is correct. However, the story about your rash is confusing. Hashimoto does not cause rash. Contact dermatitis would not be treated with hydroxychloroquine; lupus and some other rashes would be treated with hydroxychloroquine. The drug is very safe to take, and I would advise it for a lupus rash. It may be that your dermatologist thinks that it is more like lupus than he or she might be telling you. Bottom line: drug is safe, can be used for lupus and related rashes, would not be used for contact dermatitis, so the key is to find out what is the cause of the rash.

    2. Could your rash be Polymorphous Light Eruption? I have a facial rash (had for over a year). I was tested for Lupus and it came back negative. However, I have now found that up to 25% of people who have PLE rashes also have Hashimoto’s. I have suspected that I have Hashimoto’s for a couple of years. PLE descriptions say most people do not get the rash on their face, but I have read about a LOT of people who DO have it on their face and who DO have it year round!

      1. Hi Jennifer- Hashimoto’s accompanies quite a number of other autoimmune diseases, including PMLE. The best thing would be to get a clear diagnosis of the rash, since there are many things that cause facial rashes. A dermatologist should be able to tell whether it is PMLE or not.

  2. Hi, I have had SLE Lupus for 12 years now and have recently started doing drug urine tests and I keep getting dilutes and am not doing anything to make it dilute could this possibly be from my lupus?

    1. Hi Cassie- Hmmmm. That’s a new one for me. There are many ways in which lupus affects the urine, including ways in which the urine could seem too dilute. I don’t know much about the details of urine drug testing, but here are some of the ways I can imagine lupus would invalidate tests: protein in the urine (draws out more water and/or binds testing agents falsely suggesting dilute), taking medications for water retention (diuretics), poor urine concentrating ability due to medications or a rare, but not unheard of, brain problem, and interference of medications you are taking that are excreted in the urine and alter the tests. It would be best to review all this with your doctors and your testing agency to see what the artefact might be, since there are many possibilities. -Dr. Lockshin

  3. Hi, I have been having symptoms of fatigue, sudden weight gain, and pain in my hips when I go to sleep which makes me have to sleep with a pillow between my legs, I have stiffness when I first wake up but it goes away after I walk around. I went to my PCP and she did blood testing and my blood panel for ana came back positive so she’s referring me to a rheumatologist for lupus. When I look on line I don’t seem to have most of the symptoms so I’m just wondering if I could have a false positive?

    Sherri Deardorff

    1. “Sorry to hear about your problems. ANA is a screening test and is often positive in situations that are not lupus. To make a diagnosis of lupus, one has to do additional tests and also match the tests to symptoms. And you are right: your symptoms do not sound like lupus. A rheumatology consultation is a good idea, though, since rheumatologists are trained in how to interpret these tests and also in how to interpret symptoms such as back and hip pain and stiffness with or without weight change.” – Dr. Michael Lockshin, Rheumatologist

  4. I was wondering how often should you have an IFA ANA blood draw up??.. I had one 2 yrs ago that came back NEGATIVE for LUPUS, RA, SCLERDERMA, SJORGENS. I dont have any fatigue or pain. I Have dry eyes sometimes. i am just so paranoid worrying about it bc my oldest sister passed away with it. Is there any advice to relax me. Ihave to pull out my results sometimes to remind myself that all my results was NEG.. But I have worried myself into ANXIETY BAD..

    1. “Hi ShaQuita, Sorry to hear about the anxiety, but glad to hear that you have no symptoms (occasional dry eyes don’t count). There is no point in repeating the test if you really don’t have symptoms. In any event, an ANA is a screening test. If you have no symptoms and a negative ANA, there is nothing to worry about. As for advice, it may be best to discuss further with your physician.” – Dr. Michael Lockshin, Rheumatologist.

  5. I cannot get an appointment with a Rheumatologist. My PCP referred me to one & they’ve had my records for 3 months but I still have not received an appointment. They tell me that the specialist is reviewing my records. HELP! My ANA was positive, Titer was 1:160, ANA Pattern was Homogeneous, Sed Rate 29, UTI’s, Mouth Ulcers, Body aches & Pain, Extreme Hip Pain, Achy joints, Hair loss, Very sensitive to light, Shortness of Breath, Swelling around the eyes, Constantly tired, Rash on face. What is wrong with me? Do I have Lupus or do I have Hashimoto’s? I can’t get into my regular PCP because he had to take an emergency leave. I just want someone to tell me what is going on.

    1. Hi LarrieAnn, thank you for reaching out. Dr. Michael Lockshin, Rheumatologist, says: “What you describe is more than can be explained by Hashimoto’s. I can also say that Hashimoto’s often accompanies other autoimmune illnesses such as lupus, so further evaluation is certainly in order. Most patients with Hashimoto’s have a positive antinuclear antibody (ANA), so that test alone doesn’t give a full answer; the other tests indicate inflammation, as you have already figured out. If you are near to us, we have a Lupus Fast Track program that will secure an appointment within a few days to see a rheumatologist at Hospital for Special Surgery. Call us at 1.877.SLE.CURE (1.877.753.2873).”

  6. I was recently diagnosed with having an early stage of Lupus. I am still confused of what categorizes it as “early”. I went to two Rheumatologist and the first one said the same. She suggested i take steroids and an Anti-malaria drug. The second one said I don’t fit the criteria for Lupus yet but will eventually develop it. Suggested I talk plaquenil. I’m concerned about having to take medications so I asked if he thinks I should take it since my recent blood work came back good (but still positive for Lupus)? He basically told me not to take it if i’m concerned and to wait 3 months and do another blood work and see how i’m doing. My symptoms would range from headaches, a circular rash on my back (once), chest pains (sometimes) and fatigue. I’ve been feeling pretty well but I also get twitches in different parts of my body, which I’m told it’s not associated to lupus when I mention it. I am left with not knowing whether to follow what the Dr. said and not take the medicine and continue to eat healthy and exercise or am I taking a risk for not starting now since it is an “early” stage?

    1. Hi Jackie, thank you for reaching out. Dr. Michael Lockshin, Rheumatologist, says: “You are right to be confused, since the concept of ‘early stage’ lupus doesn’t really exist. Although, theoretically, symptoms and abnormal laboratory tests can evolve (usually over years) to definitive lupus, most often what is called ‘early stage’ is very mild or subclinical (below the threshold for diagnosis) disease that does not evolve. Because plaquenil is a safe medication to take, is effective treatment for lupus, and because some (but not all) rheumatologists think evolution to full disease will occur, many rheumatologists advise taking it in your situation. However, there is no proof that advice is justified- it’s mostly hunches based on present knowledge. Your symptoms don’t suggest lupus, though chest pains and fatigue are common, but they are also common when lupus is not present. There are a number of blood tests that could be positive for lupus, some more important than others.”

  7. Hello,

    I am a little confused about my diagnosis. After having my 2nd child I started to develop severe chest pain (no pain with breathing in deeply). I saw a Cardio Dr. and all test and ultrasound of the heart came back normal. Then 6 months after my daughter I noticed numbness in my face arms and hands and sometimes legs. I saw a neurologist and all MRI’s came back normal. Later on things had gotten better and I have no more numbness in the face but still bad back, neck and chest pain with my hair falling out. My GP did an ANA test and it came back positive and neg. on RA. I started to see a Rheumatologist and he did a lot of blood work every three months and all came back negative even for Sjogren’s syndrome, but he wants to start me on Lupus Medication just to see if it works and is going off of the neck and chest pain and hair loss. I used to have Hashimoto’s (Hypothyroid) but was put back to normal after having my daughter. I am confused if I should start the medication or if I even have Lupus based off of what I have.

    1. Hi Vanessa, thank you for reaching out. Dr. Michael Lockshin, Rheumatologist, says: “Many patients with Hashimoto’s have positive ANA tests, so that test by itself is not reason to treat. On the other hand, many patients with Hashimoto’s do develop other autoimmune illnesses. If your thyroid tests are now normal (important to check if not done so recently), it is reasonable to consider a trial of treatment with a lupus medication. If you respond, it will help confirm that diagnosis, despite the negative laboratory tests. I assume your doctor is talking about hydroxychloroquine (plaquenil). If so, be aware that it takes about 3 months before you can decide whether it is or is not working.”

  8. I was told 19 years ago dermatologist that did two skin grafts I had discoid and systemic lupus, I have pleurisy, hair loss, bad scars from rashes that never seem to calm down two years now with continued rashes on my face and arms and shoulders and chest, underactive thyroid, very tired all day but up ever hr all night, in constant pain.. entire body achy constantly. This SSA test was done by a blood specialist – presence of antibody SSA Sjogren’s syndrome. . So my rheumatologist of 14 yrs tells me last year after treating me hydroxychloroquine steroids and other meds I dont have SLE.. OK SO two Dr’s said I do and she says I don’t I had fibromyalgia she says then she said she don’t know who is prescribing me prednisone for 2 years when I have the bottles and it was her so anyway I fired her and now I need a new rheumatologist SLE just doesn’t go away so how can she after all these years of treating me, say I don’t have it because she said my blood tests were all negative.. From what I’ve read if you’re not in a flare-up active lupus that it can have negative results is this true.. I have had all the symptoms for years and was being treated for it

    1. Hi Melissa, thank you for reaching out. Dr. Michael Lockshin, Rheumatologist, says: “If I understand it correctly, it seems that your doctors are paying too much attention to the laboratory tests and not enough to you. Lupus is diagnosed by symptoms and findings, such as biopsies of rash, and confirmed by laboratory tests. Many lupus patients have antibody to SSA. If your biopsies showed lupus and you continued to have rash, you have lupus. Sjogren’s is not associated with a rash. Its features are dry eyes and dry mouth, sometimes arthritis and swollen glands. About 80% of patients with Sjogren’s have Anti-SSA. About 30% of lupus patients do. Whether you should be treated with hydroxychloroquine, prednisone, or other medications depends on a lot more information than your note provides. And, yes, blood tests can turn negative after being positive, and they can become positive again.”

  9. I think I may have Lupus, but I am not sure how to bring it up with my doctor. I don’t want to seem like I am fishing for a diagnosis, but I want them to be sure to look for it. My mother’s best friend had Lupus and I have many of the signs that I recognize from her, but since she died many years ago it never really connected for me until my symptoms began to get worse. I have frequent headaches, low grade fevers in the afternoons, am constantly tired no matter how long I sleep, I have noticed sun sensitivity (but only on my legs and feet), Raynaud’s phenomenon, edema in my legs, difficulty breathing at times with sudden sharp chest pain, and joint pain. How do I bring all this up together without looking like I am searching for a reason to be sick?

    1. Hi Allison, thank you for reaching out. Dr. Michael Lockshin, Rheumatologist, says: “In my experience, the best way to approach this is to ask directly. Many patients do; it is a routine question for doctors- we live in the internet era now- and fairly simple to answer by doing some blood tests or offering a referral. If your doctor has a problem with that, it’s his/her problem, not yours; it’s your doctor’s duty to help you, by, for instance, addressing your concern about lupus.” If you wish to receive care at Hospital for Special Surgery, please contact our Physician Referral Service at 877-606-1555 for further assistance.

  10. Started about 15 years ago with twitching. Seen by doctors, which told me it was in my head. Fast forward five years started having chest pains. Doctor sent me in to have a heart Cath done, which didn’t find anything. Last five years joint pain and muscle pain have prevailed along with round lesions on my head. They’ll last anywhere from one week to three months. I Started taking immune health vitamins which helped for a couple of months and now I have no energy and lesions are back with vengeance. Every blood test that I’ve had done, my liver enzymes have always been elevated. Tired of spending all my money on doctors that tell me it’s in my head. I an looking for some advice, to see if I need to give doctors another try.

    1. Hi Ben, Thanks for reaching out. If you wish to receive care at HSS, please contact our Physician Referral Service at 877-606-1555 for further assistance.

  11. I had a positive ANA, I have rashes, nausea, headaches, joint pain, major fatigue, blisters on my hands and feet, reoccurring sores in my mouth and nose, pericarditis several times, G.I issues and on and on. My dad had two aunts that died from Lupus and he had Fibromyalgia. I also was anemic and started taking iron. So why are all my labs normal now? My last SED rate was 1 month ago and it was ok.

    1. Hi Shannon, thank you for reaching out. Dr. Michael Lockshin, Rheumatologist, says: “Obviously, I can’t diagnose someone on the basis of an e-mail blog. You can have active disease with normal laboratory tests. It would be best for you to be evaluated by someone familiar with Lupus, since that it’s in your family history, before deciding that nothing explains your symptoms.”

  12. I’m just confused! In 2010, I had a stroke at the age of 32 and the hospital said I had a positive ANA and then my (at the time Dr.) said I had lupus vasculitis. I had to go later to a hematologist and asked again about the positive for the lupus and he’d done blood work that said I didn’t have it and if I’d of had the lupus vasculitis I wouldn’t be up walking around like I was, also the same case with my new Dr. does this mean I have it but it’s in remission or something or that when I had the stroke it may have thrown things way off and made it look like I have lupus? Strokes run heavy on my Mom’s side and my Mom has lupus, fibromyalgia, and I believe all the arthritis you can have. I have only been diagnosed with having had 1 bad stroke and 2 small one’s afterwards, migraines, fibromyalgia, depression, and possible lupus. I just would like to know if that’s what I have or I don’t have it but to get some relief from the pain I’m in would be nice.

    1. Hi Mandy, thank you for reaching out. Dr. Michael Lockshin, Rheumatologist, says: “This is difficult to answer. An ANA alone would not be sufficient to make a diagnosis of lupus vasculitis, but other tests would allow that diagnosis. Also, there is a difficult problem, called lupus anticoagulant, that might cause a stroke in a young woman. This would be more likely to come and go than would tests that indicated vasculitis. If the correct tests were not done, then it will not be possible to figure out.” If you wish to receive care at HSS, please contact our Physician Referral Service at 877-606-1555 for further assistance.

  13. Hello, Is it possible for two different labs to get different results for the ana? I ask because I was diagnosed in 2004 with lupus. Retested in 2009, 1:80 homogenous. Told it was normal? Had one in 2012, said it was negative. I am very sick at this time with all the outward signs of lupus. My family dr. won”t order an ana. I am shocked at this disregard for my health. I have to wait to be sent to a rheumatologist, which are scarce in my area. Any suggestions on how to deal with the pain and inflammation? Thankyou

    1. Hi Karen, thank you for reaching out. Dr. Michael Lockshin, Rheumatologist, says: “There are 2 questions here. First, can 2 laboratories give different results? The answer is yes because different laboratories use different techniques and/or have different thresholds for calling something abnormal. The second is change over time, and the answer to that is also yes, because diseases in circumstance change. That said, an ANA is only a screening test for lupus- almost everyone with lupus has a positive test- but one follows lupus patients with other tests, such as ANTI-DNA and complement and blood count. The more important thing is what you call the outward signs of lupus. The ANA itself is not so important in deciding whether you do or do not need treatment. That’s what you should discuss with your doctor.” If you wish to seek consultation at Hospital for Special Surgery, contact our Physician Referral Service at 877-606-1555 for further assistance.

  14. I was diagnosed with Acute cutaneous Lupus 11/2 years ago by skin biopsy. It covers nearly 95 % of my body with lesions . Sometimes I have positive ANA sometimes I don’t. I also have RSD or some doctors call it Causalgia due to a car accident in 2004.

    I cannot go into the sun, get hot, take a hot shower, basically become upset or upset about anything.
    So the pain is incredible. The scarring is horrible.
    The most disturbing thing of all is that I had to give up my job of almost 8 years, some doctors couldn’t be bothered, a lot of the Medical field is so mid-informed about Lupus they really want to give you you steroids and when that doesn’t work refer you out to specialist on and on it goes no one knows it’s a shame. I can’t work, I’m miserable.
    And yes I’m depressed. Do you know anyone who can help?

    1. Hi Gina, thank you for reaching out. Dr. Michael Lockshin, Rheumatologist, says: “With either acute cutaneous lupus or subacute cutaneous lupus the ANA is almost always positive. Some forms of skin lupus, such as discoid lupus, frequently cause scarring, but acute cutaneous and subacute cutaneous usually do not. Neither causes much pain. It sounds like your case is very complicated, so you should consult an institution with a lot of expertise in this field.” If you wish to receive care at HSS, please contact our Physician Referral Service at 877-606-1555 for further assistance.

  15. I was diagnosed with SLE (mild) about 10 years ago. My Rheumatologist has since moved and every Rheumatologist I go to tells me I am not sick and that I do not have lupus. I have a positive ANA titre consistently of 1:800 (homogenous), only 1 time has it been any higher (1:2650). The Rheumatologist say that the ANA means nothing even with it being homogenous because many healthy people without lupus get the same readings. My panels all come back negative which is why they are telling me I do not have lupus. I get a rash that the rheumatologist feels is rosacea but the dermatologist feels its lupus related. My symptoms come and go which my orig doctor said was remissions. My rash, hair falls out, horrific pain in joints as well as physically exhausted to the point I need help out of bed. I will stay awake for an hour and have to go back to bed because I am completely exhausted and In pain, so much to the point it brings me to tears. I am currently pregnant and can barely move d/t pain and being so tired. my rheumy said its pregnancy related and the gyno says it lupus related. My baby is considered “small” which I read was something that can happen with someone with lupus. I am at wits end and have lost all hope I also get blue nails when cold, my toes and fingers are always cold and on occasion once every couple of months I get erythromelalgia. I am really sick of feeling sick and tired but then again hearing I am perfectly healthy.. Can anyone help?? Please??

    1. Hi Meghan, thanks for reaching out. Dr. Michael Lockshin, Rheumatologist, says: “Sounds like there is some misinformation. The ANA is only a screening test for lupus, not a way of saying if you have the disease or not. A titer of 1:2560 in a young woman is always abnormal. (ANA titer is reported by diluting blood two-fold from 10, so the possible numbers are 1:10, 1:20, 1:40, 1:80, 1:160, 1:320, 1:640, 1:1280, 1:2560, 1:5120; if you meant 1:80 [rather than 1:800], it is still abnormal, but at the low end of abnormal.) It would be easy to distinguish rosacea from a lupus rash with a biopsy. Has this been done? Hair loss, joint pain, etc., are not part of normal pregnancy. In fact, hair usually grows (falls out after delivery). Small-for-dates babies are also not normal. I?m not sure what you mean by erythromelalgia, since there is a painful red rash of the hands that is a marker of a pregnancy complication. It looks different from conventional erythromelalgia. It would be best if your rheumatologist, dermatologist, and obstetrician conferred and came to a meeting of the minds. If they won?t or can?t, perhaps you should get another opinion.” If you wish to receive care at HSS, please contact our Physician Referral Service at 877-606-1555 for further assistance.

  16. Im really concerned. I’ll try to be quick and to the point. One day I noticed my second toe was swollen with no pain. The next night 3 of my toes were swollen with petechia. I had pain in my calf and my foot hurt really bad. I went to the ER, they checked for blood clot, did EKG, and xrays. The ER said I had vasculitis and she was leaning towards lupus. She asked if my tibia was broken in the past and I said no. She said it looked like an old break had occurred and healed differently. I went to my regular Dr and she agreed with the ER Dr. I went for blood work and a urinalysis. All came back normal. But here I am with joint pain that has been going on for months, my wrist into my elbow, my knees, now my left foot. I have lost about 25-30lbs in the past few months as well. I also had a horrific rash last summer after tanning that my dr treated with steroids and it cleared up with that. Now my foot just feels different when Im walking almost a crunching feeling. My question is, can I still have lupus with normal blood work? Should I go for a second opinion? My dr sent me today for an ultrasound to see if I had a clogged artery which doesn’t seem likely. I don’t have high cholesterol or high blood pressure. Im 33yr and really skinny. I don’t want lupus and I don’t want to waste my time going for another opinion. Thanks for any advice

    1. Hi Trish, thank you for reaching out. Dr. Michael Lockshin, Rheumatologist, says: ?This is very complicated and yes, you should seek another opinion. It is not likely lupus if the blood tests are normal (assuming that the right tests for lupus were done- there are several different ways to test, and doctors sometimes don?t know which tests to do). The problem could be in very small blood vessels that are not seen on the usual ultrasound tests.? If you wish to receive care at HSS, please contact our Physician Referral Service at 877-606-1555 for further assistance.

  17. Hello. I basically have every symptom of Lupus except for the face rash. Yet every blood test they have done show that everything is normal. My doctor thinks I have Lupus but we can”t back it up with blood work. Can”t this happen? Can you have Lupus yet never have positive blood results?

    1. Hi Heather, thank you for reaching out. Dr. Michael Lockshin, Rheumatologist, says: “There are many symptoms that lupus causes. You don’t need the rash to make a diagnosis. However, it is very unusual to have all blood tests normal. Sometimes there are very unusual problems with the blood that make the machines read the tests incorrectly, but a diagnosis of lupus is unlikely if they are truly normal. That includes blood counts, urinalysis, chemistries, ANA, Anti-DNA, Anti-RNP, Anti-SSA/Ro, Anti-SSB/La and C3 and C4 complement, and ESR (“SED Rate”) at the minimum. Some patients have “lupus-like” disease with usually not completely normal, but not clearly diagnostic, blood tests. Bottom line: be sure all the above tests have been done. If they are all normal, ask your doctor to rethink your case.” If you wish to receive care at HSS, please contact our Physician Referral Service at 877-606-1555 for further assistance.

  18. Hi, I live in Tulsa, Oklahoma I was diagnois with Lupus about 2yrs ago, is there a facility in my area that I can go to for further testing.


    1. Hi Rosa, thank you for reaching out. It is best for you to consult with your treating physician. If you are interested in receiving care at HSS, please contact our Physician Referral Service at 877-606-1555 for further assistance.

  20. Just want to know how two specialist ( rheumatologist) can have different diagnosis? I am ready to just tell all my doctors that I quit all my meds, cause they sure ain’t giving me any! They are playing with my life here? What can I do to make them listen to me? To Me!,

    1. Hi Grace, thank you for reaching out. Dr. Michael Lockshin, Rheumatologist, says: “I’m not sure which diagnoses you were referring to, and what information you gave to the two rheumatologists. Diseases can change over time, and sometimes there are overlaps between one disease and another, for instance lupus and rheumatoid arthritis, so one doctor may emphasize one aspect and another the other aspect. Or some tests that were once negative may become positive. Sometimes one doctor is wrong. I would have to know a great deal more about the circumstances to answer the question more directly.” If you are interested in care at HSS, please call our Physician Referral Service at 877-606-1555 for further assistance.

      1. Hi. I am a 50 year old female that has over most part been healthy until this spring. It started with dizziness and unbalanced symptoms that were really bad. Couldn’t walk straight. I was flopping all over. Had bad headaches. I would wake up feeling like I had a bad hangover. It caused fatigue muscle weakness and shortness of breath. My legs felt like jello. The dizziness and headaches slowly went away in a three week time frame but then I started to stutter which also lasted for about a week. I had two seizure like episodes back to back about half hour apart. I did not loose conscious but couldn’t respond and I can’t account for some of the time of the second episode. I was extremely tired after each episode and couldn’t lift my arms for a short time after. Blood drawn and my yah level was 9.0. I am on thyroid meds for that. It is now 5 months after the initial onset of the dizziness and I’m still walking different and I stutter some times and I have a slow or brain fog feeling. I still get leg spasms at night but not as bad as I used. When I have them bad it wakes me up and I realize I have set the bed also. Most of the really bad symptoms passed but now I get the hives. It seems like everything I eat or drink gives me the hives. It’s like I get the hot flashes in my head only and I drop in seat off my face and forehead. I’ve been getting these hot flashes since the dizziness started in march. I just don’t know what to think any more. I’ve been reading up about lupus and I do have the nose Alcer that I’ve had for about 5 years. It doesn’t really hurt at all but it is growing and had left a hole in my septum center part of the inside of my nose.

        1. Hi Charlene – I am sorry to hear about your symptoms. They do sound confusing. I’m not sure what you mean by “yah level”. Could it be TSH? That would be the right number to treat you with thyroid medication. On the other hand, your symptoms don’t sound like they are due to inactive thyroid. Similarly, there are many things besides lupus that cause ulcers in the nose, and many of them can cause the types of symptoms you are having, so I think you should see an ear nose and throat physician and have the ulcer properly diagnosed, since it likely is a clue to your symptoms.