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I'm a mom, a wife, a best friend. Sick with CFIDS/ME/CFS and Fibromyalgia since 1975 as a result of a nasty flu while still in grad school, it wasn't until the late '80's that I received a diagnosis. Until that flu I'd never really been ill before. With each year I get progressively worse and add to the bucket load of symptoms I'm living with. I've been blessed with an incredible family and best friend who've stayed with me through my struggles as we continue to find a way out of this monstrous illness and its complications. We've tried seemingly every approach to find my way back to health. Often I think our best weapon in this undesirable and unasked-for adventure has been laughter.

Tuesday, May 28, 2013

When Is Lupus not Lupus? The ANA...



Systemic Lupus Erythematosus (lupus) has historically been called "the great imitator" within diseases.  And mind you, lupus has earned this title fair and square because it, as many of you know, can affect many different systems of the body which can cause an incredibly varied array of signs and symptoms. (That's a mouthful!)  The screening test for lupus is the antinuclear antibody blood test (ANA) and it's incredibly rare that someone with lupus would have a negative ANA.  However, having a positive ANA does not necessarily mean that you do have lupus.  Pretty confusing?  You betcha.

I recently interrogated interviewed my rheumy/immunologist and asked him what his pet peeves were - professionally and not the personal kind. (Hahaha: we do have a weird relationship!)  He practically jumped out of his chair without having to think about it.  It was getting too many referrals from doctors who were convinced that their patients with positive ANA's had lupus when indeed they did not.  These patients had chronic pain in joints and muscles, fatigue, and a blood test that suggested they had a connective tissue disease like lupus.  Sounds fair enough.

However, there are numerous medical conditions that are characterized by pain and fatigue which can cause sufficient stress to confuse the immune system into making an auto-antibody like ANA, albeit in small amounts - certainly too small to cause obvious disease.  Most of these patients had something else and it took a great deal of time, energy and further testing in an effort to explain and to convince them that they did not have lupus - they were just that convinced that they did - and who could blame them?  Getting a positive ANA is just plain scary.  Furthermore, what added stress to the patient believing that lupus was hanging over the their head until the patient's condition was indeed straightened out!


And so the important point to remember is that the ANA is not just a test that is positive or negative.  There are DEGREES of positivity.  (Please keep in mind that this is all common knowledge in the rheumatology world.)

The way the test results are reported is in the manner of a ratio which represents how strong the antibody concentration is in the serum (blood without the cells).  For example, an ANA that is positive at a titer of 1:40 is a rather low amount of ANA, which is often found in patients with a variety of diseases, including fibromyalgia.  On the other hand, an ANA with a titer of 1:1,280 is a high titer, one that's often seen in lupus patients.  

Keep in mind that the pattern of ANA is also important.  There are four different patterns that can be seen under the microscope: homogeneous, speckled, nucleolar and peripheral.  The latter, peripheral, is more consistent with lupus than the others.

If a patient has a high titer ANA, further studies are typically done to nail down the correct diagnosis.  These often include a double-stranded DNA test and serum complement levels.  Of course, a good physical examination is essential in pointing the way to the most critical blood test to be drawn in order to   differentiate among the likely diagnosis in order to come to a correct diagnosis.

The bottom line is that a patient might have a positive ANA but that does not necessarily mean that one is dealing with lupus.  It takes a skilled clinician to determine if lupus is present or not, and if not, what is causing the patient's symptoms along with the positive ANA.

True, lupus IS "the great imitator" but problems such as fibromyalgia and early rheumatoid arthritis (both of which can have positive ANA's) are up-and coming contenders for that title.  How many of you have had low titer positive ANA's, or worried that you might have lupus and it turned out to be something else?  Worse, the positive ANA was not explained at all, or just poo-pooed?

I hope this helps shed some light on an area that can be very confusing and worrisome.

In the meanwhile, I hope everyone out there is feeling their best - only better!  Ciao and paka.


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17 comments:

  1. Good article! TY-like your blog :) HUGS, Julie

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  2. Thanks so much, Julie. I so appreciate the compliment! xx

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  3. Thanks for the info. I'm in diagnosis limbo. I have some symptoms and an ANA of 1:1280, but all other tests for lupus were negative, as is my rheumatoid factor. Of course, the latest test results came in the mail and I have to wait 3 more weeks to discuss things any further with my doctor.

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    1. Oh dear. I do so hope you get good news, or at the very least good results and care. Please keep in touch. xx

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  4. Hi there, appreciate the article. My ANA was also 1:1280, with both homogeneous and speckled. I already have 1 very rare auto-immune disorder involving connective tissue, but I don't it typically causes such high antibody counts. I have some symptoms of lupus, like thinning hair, paresthesias, joint pain, fatigue, muscle weakness, and photosensitivity with rash. I'm waiting on some more results, but so far it's just the high ANA. The waiting is awful! I'm confident though that regardless of the outcome, I can minimize complications through a stringent healthy lifestyle.

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  5. Reading this helped explain a lil more. My ANA came back positive and is 1:1280 with Homogenous pattern and also my Vit D level is at 17. The rest of the blood tests came back normal. The x-rays of my hands though show Tiny osteophytes about scattered bilateral MCP and interphalangeal joints.

    My fingers get cold and stiff with dull tingly feeling or they swell up and get beat red. My toes will swell up as well and turn red. This happens even when I am sitting down.

    I was told to come and get retested in 6-12 months.

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  6. Well my ANA came back at 1:40 speckled pattern I believe and DSDNA was positive. So maybe testing further for certain patients especially if they're just starting to develop lupus symptoms. If I had a doctor that stopped at a low positive ANA then I wouldn't have gotten the panel with a positive dsdna. I have heard that ANA levels can fluctuate and sometimes test negative and positive.

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  7. My daughter had a positive ana at 1:320 with a nucleolar pattern. It looks like the other tests for lupus came back negative. So what does this mean? The ana was positive and means something is going on. Is that right? Anyone please help.

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  8. Thank you for this article, I have Lupus related auto immune disease, that's the diagnosis from 8 years ago, but I have just had tests done on my 25 year old Autistic son, who cannot communicate his symptoms as is only partly verbal, his ANA's came back 1280, and he now has an appointment with immunology next month, he has some bad behaviours which I have been trying to explain may be that hes unwell or in pain, I hope at last they might be more sympathetic to him in his group home, cannot believe he has been given another huge challenge in his already complicated life, also just diagnosed with a small gall stone.

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  9. Thanks for your blog - hope you're doing well two year on from it.
    My own story is that I've had six-monthly blood tests for around 8 years now and every time I get a 1:1280 or even higher ANA result. Every. SIx. Months. I don't have Lupus though... Just lots of aches and pains with no name (yet!). I find it hard to find info in the ether that might give me a clue, even to ask better questions of highly respected immunologist I see. Grateful for any comments or suggestions. Keep smiling.
    Cheers, Australia

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    1. I'm right there with you Australia. The only thing I can suggest is that you do some research, find some medical university articles and beat your doctor over the head with them. When my rheumy said my ANA was of "undetermined significance," I immediately shot back with the results from a Johns Hopkins study.

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  10. Life is just full of lovely surprises. Like today, I went to my rheumy and was told they basically can't say I have anything. I have a positive ANA at 1:1280 homogeneous and a family history of autoimmune diseases galore. Like 5 of my 15 immediate family members. I have several hit and miss symptoms of lupus and rheumatoid arthritis. Fatigue, raynuads, joint pain (but no swelling), stiffness, tummy issues, headaches, nerve pain, tendon pain, and mouth ulcers. Then to top it all off, I was told by my doctor that they don't really go by the titer, as they are checking very specifically for rheumatic diseases O-o. What?!?!? Then why in God's name did you do the test!

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    1. An update to this post:

      My c3 and c4 complement test came back decreased. 81/<8 respectively. Got a call back from my rheumy saying it now looks like I have an autoimmune disease, possibly lupus. You think?!?

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