Negative ANA tests

[0EmilyWanamaker0]

At 14, I first went to a rheumatologist to get an ANA test done, because all but 3 women in my family have lupus and and/or rheumatoid arthritis, and I had been experiencing all of the common lupus symptoms. The test came back negative. At 15, I went to another rheumatologist to get the test done again, but the doctor refused to give me the test, because of the last test coming back negative. Okay, so there isn't one person in my family who had gotten a positive ANA test on the first attempt. The doctor had completely ignored all of my symptoms, except for my nerve pain. She then immediately diagnosed me with just having over active nerves. But that diagnosis didn't explain how much sunlight affects me, how I'll get the butterfly rash, my hair has been falling out, and all the pain with lupus. Why does a negative ANA test occur before getting positives for some people?

[Hidden]

I never had Lupus tests when I was young but had many symptoms of Sjögren’s and Lupus and hypothyroidism from the age of around 8 onwards. So I have no idea what they would have been back then but my autoantibodies were negative then positive. RF and ENA panel is now negative and now ANA is positive and I have Sjögren’s with RA. I’m 55 and think it can take decades before these autoimmune diseases show up in blood and tissue.

[Loopyloo43]

I was dx 20 years ago and only had one positive ana test all have negative since. And a lot of my symptom s came later on but still had negative ana s after so not sure why this wouldn’t show at the time and often wondered as to why when the symptoms were so prevalent.

[Paul_Howard Partner LUPUS UK]

Hi 0EmilyWanamaker0 ,

The ANA test is positive in around 95-98% of people who have SLE, so whilst it is rare, there are some people who will always have a negative result and they are sometimes considered to have seronegative lupus. Unfortunately this isn't recognised by all consultants.

It is also possible that ANA levels can fluctuate, so sometimes they may be positive and sometimes they may be negative. Those who have a gradual onset of lupus symptoms over a number of months or years may also not have a positive result at the beginning of their disease.

I think it would be worth asking your GP for a referral to a different rheumatologist for a second opinion. It may be best to request a referral to someone with a specialist interest in lupus. If you'd like to let me know what area you live in I can provide you with details of any lupus specialists we may know nearby.

Our article about getting a diagnosis of lupus may also have some information and advice that you find helpful - lupusuk.org.uk/getting-diag...

[Melba1]

Hello, I have just been researching this and have read most of the recent research and spoken to some of the top rheumatologists about this. Here is what I’ve found:

ANA can take time to become positive. In the early stages of the disease, symptoms can come before ANA positivity.

ANA can become permanently or temporarily negative for many reasons including steroids and other treatments.

ANA is more likely to be negative in people with long standing disease.

The 95% often quoted as being ANA positive is those who have EVER had a positive ANA at at any one time. If you look at the ACR criteria, it is at any one timepoint. This was for a reason as many lupus signs will be present in some flares and not in others.

Recent research is actually showing a lower proportion than the 95%. A large phase 2 study of treatments for the most severe forms of lupus showed nearer to 75%

Those with a primary immunodeficiency disease (genetic) will often not have a strong enough immune system to make enough antibodies and autoantibodies. If the immunodeficiency is of a complement protein then that person is far more likely to develop lupus yet far less likely to have any positive blood tests.

I think in your case with such a strong family history it’s worth asking them to check your total complement levels (CH100) to see if you’re deficient in complement as this is inherited and often occurs in families where multiple people have lupus?

In my case I was ANA negative for about 2 years after getting symptoms, then ANA positive for about 2 years then have been ANA negative for the rest of the time. We only found out recently that I had a primary immunodeficiency because my CH100 was always severely reduced even when I was well.

I think some GPs and even some less knowledgable rheumatologists are putting too much weight on ANA results. Both sets of disgnostic criteria do not say you need to be ANA +ve to be diagnosed, just have a number of certain symptoms and blood results of which ANA is only one!

Hope you get a good rheumatologist.

X

[shareasmile in reply to Melba1]

Melba, thanks for sharing your knowledge on this--so much good information! My ANA was negative for several years even though symptoms were present. My GP dismissed me. Then it turned to low positive, then about two years ago strongly positive. Once that happened, my rheumatologist is no longer interested in running another ANA. I'm okay with that.

Question for you: If you have a low CH100, could you be really sick, but not have serious symptoms? Like say from ordinary illness such as the flu or cold--simply because your body can't fight it, so there is no fever or severe reaction even if you have the bug?

[Melba1 in reply to shareasmile]

I’m not sure. From what I understand, it’s more likely that your blood results might not show what’s expected so less likely to have antibodies/ autoantibodies and acute phase reactants (ESR/ CRP) may not rise in the normal way if you have a primary immunodeficiency of complement. I think your body would still show signs and symptoms of an infection though? I’m seeing an immunologist soon so will ask and let you know!

[shareasmile in reply to Melba1]

Thank you, Melba! I look forward to the answer!