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Yes! you can be ana negative and have lupus!

1/10/2021

2 Comments

 

Protect yourself from medical mistakes.
Lupus Question of the day ...

Dr. Don Thomas explains ANA negative lupus
Full answer below:

Dr. T says:
"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 they 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"
Picture
Causes of, reasons, and solutions (if needed) when ANA is negative in lupus patients:

- When you have systemic lupus erythematosus (SLE)  that is under good control on treatment (like 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!
- Cutaneous (skin) lupus 
     Most patients are ANA negative when it is confined to the skin
- Laboratory error during the workup of SLE, especially when done by the ELISA 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 with 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 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 later on

Author

Don Thomas, MD, author of "The Lupus Encyclopedia" and "The Lupus Secrets"

2 Comments
Heather
1/11/2021 04:31:01 pm

Can ANA be positive at one dr then be negative without treatment at another (while DSDNA stays positive) and symptoms and have lupus?

Reply
Don Thomas, MD
1/11/2021 05:23:23 pm

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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    Note that Dr. Thomas' posts are for informational purposes only, and are not meant to be specific medical advice for individuals. Always seek the advice of your healthcare provider with any questions regarding your own medical situation.

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