Lupus and Testing: Questions Answered

by HSS on the Move
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.

Topics: Rheumatology
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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.

Comments

grace gentry says:

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!,

HSS on the Move says:

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.

mry caffrey says:

could I plz be put on u’r mailing List

Marycaffrey@att.net

HSS on the Move says:

Hi Mary, thank you for reaching out. To sign up for our e-Newsletter, please visit http://www.hss.edu/registration.asp.

ROSA says:

I WILL HAVE TO MAKE A GENERAL SURGERY, GYNECOLOGY AND I HAVE LUPUS, I TAKE PRETNISONE,FOR, AND NORVAT Y ATENOLOG,FOR HIGH PRESION,AND NAPROSEN FOR PAIN OVARY, MY ? IS DO I WILL HAVE A CUT BLINDING ? SORRY FOR MY ENGLISH,

HSS on the Move says:

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.

Prascovie Lottie says:

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.

HSS on the Move says:

Hi Prascovie, thank you for reaching out. You can check with your local Arthritis Foundation: http://www.arthritis.org/oklahoma/. If you are interested in receiving care at HSS, please contact our Coast to Coast (C2C Program) at 212-606-1610 or through email at C2C@hss.edu for further assistance.

Heather Briggs says:

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?

HSS on the Move says:

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.

trish says:

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

HSS on the Move says:

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.

Meghan says:

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??

HSS on the Move says:

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.

Gina Whitaker says:

I was diagnosed with Acute cutenous 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 ashame. I can’t work, I’m miserable.
And yes I’m depressed. Do you know anyone who can help?

HSS on the Move says:

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.

Karen Pelletier says:

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

HSS on the Move says:

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.

Mandy says:

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.

HSS on the Move says:

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.

Shannon Nicholles says:

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.

HSS on the Move says:

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.”

Confused says:

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.

HSS on the Move says:

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.

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