Heather
Can You Have Lupus With a Negative ANA Test? “Yes you can!”
posted in All on January 10, 2021 by
Protect yourself from medical mistakes.
Lupus Question of the day …
It is not uncommon to ask, “can you have lupus with a negative ANA?”
Dr. T responds to the question of “can you have lupus with a negative ANA?”:
1. I hope you kept personal records at home to give to your new doctor. One of my “Lupus Secrets” is to keep copies of your labs, biopsies, and doctor notes, especially those that first made the diagnosis of systemic lupus. The purpose is exactly for situations like this. I had two patients in the past end up having severe flares of their systemic lupus after their drugs were stopped by a new rheumatologist, due to this exact scenario (one had moved, the other changed insurance plans). Having all the records can make a huge difference and prevent this mistake.
2. Around 20% of SLE patients will have their ANA become negative on successful treatment. These are typically patients who go into remission or “low disease activity.” Recent studies also show that patients whose ANA becomes negative on treatment end up having fewer flares than other patients. In the past, we always taught that the ANA never needs repeating once positive the first time in SLE patients because it is not reliable in following disease activity on treatment. However, now, we know that it helps give our patients information about prognosis. If it becomes negative, we can tell our patients, “this is great news! You have a lower likelihood of flaring compared to patients whose ANA stays positive, as long as you keep taking your medications.”
Disclaimer: This is for medical information only and is not for individual medical advice.
Thanks to Kelli Roseta of “More than Lupus” for producing “Ask Dr. T”
Causes of, reasons, and solutions (if needed) when the ANA is negative and one wonders “can you have lupus with a negative ANA?”:
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“Can you have lupus with a negative ANA?” Yes… for many reasons as noted below
– When you have systemic lupus erythematosus (SLE) that is under good control on treatment (as in this patient)
PROS = this is great, you are less likely to flare!
CONS = a new doctor could question the diagnosis. Keep all your old records and labs!
– Laboratory error during the workup of SLE, especially when done by the ELISA or multiarray method
SOLUTION = ask for your ANA to be done by 2 different methods, especially by immunofluorescence
or ask for the AVISE Lupus test
– Have SLE plus a different autoantibody, especially anti-SSA antibody and ribosomal-P antibody
SOLUTION = check anti-SSA and anti-ribosomal-P if someone has SLE symptoms
or ask for the AVISE Lupus test
– Someone has very early SLE with fluctuating low level ANA levels
SOLUTION = repeat ANA test using two different methods, especially by immunofluorescence
or ask for the AVISE Lupus test
– If have severe hypogammaglobulinemia (immunodeficiency) and have SLE
SOLUTION = ask your doctor to order the AVISE Lupus test
– Childhood SLE
Especially younger children have a much higher chance for ANA negativity
However, they usually become ANA positive as they get older and their lupus worsens
– Cutaneous (skin) lupus
Most patients are ANA negative when it is confined to the skin
Author
Don Thomas, MD, author of “The Lupus Encyclopedia” and “The Lupus Secrets“
4 Comments
- Christina
I am in the hospital as we speak. My ana is negative. The ring rash is all over me, esp in sun exposed areas. I have joint swelling and pain. I have been on iv steroids for 8 days, with 3 er visits b4 then. I’m burning, itchy, and materials are uncomfortable.
This hospital says I have eczema?? Skin biopsy showed this.Any suggestions or specialist in NJ that you know about?
I know this is not eczema!
- Donald Thomas, MDModerator
So sorry to hear this, Christina. My best advice is to find a very good medical dermatologist in your area for a second opinion. All my patients who have rashes or hair loss, I ask them to also see an outstanding medical dermatologist here where I am. Most derms do lots of botox, cosmetics, skin cancers, acne, but don’t really see a ton of lupus-like disorders. To find one, call derm offices close to where you live. Ask the phone person, “do any of your dermatologists specialize in lupus or medical dermatololgy?” Most should say “no” if they are being honest. Also, look up tertiary care medical centers and medical schools, especially those who have a large derm residency … call them up and ask the same. Then Google their names and “ratings reviews.” Choose someone with great reviews from numerous rating sites (many places “work the system” and you’ll see tons of 5 stars… but if they have 1 and 2 stars in several other sites… I’d choose otherwise).
Take lots of pictures, good ones, on your smart phone with good lighting. Have someone do it for you. Take the biopsy report and hospital records in with you at the appointment
Good luck!
Donald Thomas, MD
- Don Thomas, MD
Heather: Absolutely. That is one of the reasons it doesn’t not necessarily need to be repeated when it is already positive once. Recent studies also show that there is significant variation between labs regarding positivity and accuracy (ending up positive in one lab, yet negative in another).
Here’s an article that discusses how variable results can be at different labs: https:/ard.bmj.com/content/77/6/911
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