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View Full Version : Can someone explain HOW negative ANA can still be lupus?



laurid8967
06-15-2008, 05:41 PM
OK folks,
Its me Lauri and I cant help but still have a lingering doubt about the diagnosis. I have so many telltale signs of lupus, many of which started a long time ago, some have come and gone over the past few years, etc. With regards to the eleven criteria, one would say I have lupus. As for other symptomology - I have alot of it. Swollen painful joints, ridiculous fatigue, rashes, clear butterfly rash on face, unexplained seizures, nose and mouth sores, hair loss, Dx amemic, three miscarriges, told by dental specialist have Sjorgrens, Dx Raynauds, history of pleurisy, always really high SED rate, high CRP, low C3 and C4 levels and the continual NEG ANA!
Im sorry, can someone explain to me HOW someone can still have lupus without the pos ANA? If all these symptoms are caused by antibodies, and your blood work says you dont HAVE the antibodies, then how can it be lupus? My ex-neuro (smart guy, but long story) always believed I had it (even perscribed my Plaquenil) and said that sometimes our bodies dont show in blood work whats actually going on in our bodies. He stated, at that time, he had a paitent dying of brain cancer, and that mans blood work was great (not showing any signs of cancer). I dont know, theres just this little part of me - even though I am feeling better already with the treatment for lupus - that says without the ANA, I dont have it. Can one of you super-knowledgable folks explain to me how this can be? Why would the blood NOT show antibodies, if the antibodies HAVE to be present to cause these symptoms? What is the theory of the lupus experts? I know they say like 5-10% dont have a pos ANA, but why?
I know this is a tough question, but Im just curious, and like Saysusie always says, "Knowledge is Power!"
THank for any help you could give me
Love and prayers -
Lauri

Saysusie
06-15-2008, 07:30 PM
Lauri;
It is possible to have Lupus with a negative ANA. It is called ANA-Negative Lupus. 95-98% of persons with lupus have a positive test for ANA. Therefore, less than 5% of people can have a negative ANA test, and still have lupus. Therefore, persons having symptoms and signs suggestive of lupus, but with a negative ANA test, should be very carefully evaluated for a large number of conditions that can also have a positive ANA test. These conditions, which can mimic lupus and have a positive ANA test, include mixed connective tissue disease, undifferentiated connective tissue disease, scleroderma, myositis, rheumatoid arthritis and several others. Most of the time, it may take quite a while before a clear diagnosis of Lupus can be made, because evolution of the disease may take some time: symptoms come and go, symptoms develop slowly, some symptoms disappear to be replaced by different symptoms. Such is the nature of the disease. Lupus can present itself in a bewildering number of ways, even to the extent of mimicking other diseases such as RA and MS. With the variety of presentations, lupus is difficult to diagnose and it can be overlooked, often for years, unless the doctor or consultant is alert to its possibility.
Most Lupus patients who have a negative ANA test usually have a positive test for anti-Ro (also called anti-SSA) or anti-La (anti-SSB). Anti-Ro (SSA) is commonly found in cases of ANA-negative lupus and may also indicate Sjogren's Syndrome as an overlap condition (secondary Sjogren's Syndrome) with Lupus. Anti-La(SSB) occurs mainly with primary Sjögren's Syndrome.
About 10% of ANA-Negative Lupus cases may eventually become ANA positive. The features that unequivocally diagnose SLE are (1) high titer anti-double stranded DNA antibody, (2) anti-Sm (Smith) antibody, (3) biopsy-proven kidney disease, or (4) biopsy-proven skin disease, according to The American College of Rheumatology criteria are used to group similar patients together for research and treatment trials. They are classification criteria and are not meant to be used to make a diagnosis. The antibody tests must be accompanied by symptoms, since antibodies alone, with no symptoms, do not diagnose the disease. If a patient has symptoms plus diagnostic antibodies or biopsy proof of disease, the patient has SLE. If the patient lacks all four, the diagnosis is presumptive, even in the presence of illness.
Now, to give you an even more specific answer to your question: The antinuclear antibody test is performed with different techniques in different laboratories; some techniques are more sensitive than others, such that one laboratory may find a (usually weak) positive test while another finds it negative. Some laboratories dilute 10-fold for screening (1:10), some as much as 100-fold (1:100), and some not at all. A commonly used method starts with a dilution of 1:10, then doubles with every successive dilution, so the next specimen tested is 1:20, then 1:40, 1:80, etc., the highest number positive being what the laboratory reports (for instance, 1:1280). Most lupus patients have sera that react at very high dilutions, essentially always more than 1:80, often more than 1:5120. Depending on the laboratory's reporting habits, a test that is positive at 1:10 or even 1:40 may be called either negative or weakly positive. Most laboratories count 1:80 and higher as clearly positive.
The point is that ANA-negative DOES NOT ALWAYS precisely mean COMPLETELY negative. Another point is that speckled (as opposed to diffuse or peripheral) ANA patterns do not read well in automated immunofluorescence tests, so results may be reported as lower titer or negative than they would be if they were hand read by an experienced technician.
The ANA is used to screen for lupus, NOT TO DIAGNOSE IT. This means that, for practical purposes, if the ANA is negative an no other symptoms are presented, lupus does not exist and no further testing need be done; indeed, some laboratories will not further screen sera that are ANA negative. If the ANA is positive, that means only that lupus is possible and that tests for antibody to double-stranded DNA, Sm (Smith), Ro/SSA (Sjogren's syndrome A), La/SSB (Sjogren's syndrome B), and RNP (ribonucleoprotein) must be performed to determine whether lupus is or is not present. Because of a variety of technical factors, it is possible to have a negative ANA but a positive specific antibody test, though this is very uncommon (about 5% as I mentioned above); for positive (not presumptive) diagnosis, a positive test for a specific antibody is more important than is a negative ANA test. Thus an "ANA-negative" person with strongly positive antibody to Sm would unequivocally have lupus (this has occurred more and more often with patients). Because of this possibility, evaluating a patient for lupus, doctors will usually simultaneously (to save time) tests for ANA, anti-DNA, anti-Sm, anti-Ro/SSA, anti-La/SSB, and anti-RNP, as well as for other abnormalities relative to the patient's specific condition. That is, the doctor does not completely discard the diagnosis if the ANA test is negative.
In a lupus patient-or in a patient with suspect lupus-most tests will change during the course of their disease, the changes can either indicate improving or worsening of symptoms. Furthermore, tests often revert to normal during treatment. So, it is also quite possible, during treatment, that a person's ANA can be negative and that person still have active disease.
The answer to the question, "Does ANA-negative lupus exist?" is technically "yes", with a large number of buts, and ifs, and whens. My favorite answer to that question is: the question is really not that important. It is never critical to say, definitively, that a given patient does or does not have lupus. What is important is to evaluate the current symptoms, to put the symptoms into an overall context that includes blood tests, duration of symptoms, other illnesses, and medications, and to develop a treatment plan based on the total information rather than on a blood test alone.


Peace and Blessings
Saysusie

laurid8967
06-16-2008, 08:07 AM
Saysusie,
Thankyou so much for taking the time to explain this to me in such a detailed manner. As I said, my symptomology has always indicated lupus, and I have had many different docs feel this is what I have. However, once ANA has come back, they have changed their minds. In the past, Ihave tested positive for an antibody indicating SOME autoimmune disease, however, I forget which one. I just remember the infectious disease doc saying that the blood work had tested positive for an antibody indicating autoimmune when I went back to discuss test results. I had to stop seeing that doc, and I cant even remember now why (insurance? IDK). I did hit a point in my journey where I stopped seeing ALL docs because I literally couldnt take it anymore.
Anyway, thankyou again, you are so incredibly kind to take the time to help all of us new to the disease, and to constantly try to help others while you, yourself, may not always be feeling well.
You are a true gift to this community. God Bless You!!
With love and gratitude -
Lauri

SwirlyGirly
06-16-2008, 11:04 AM
I have had lupus for 22 years and have NEVER tested positive for an ANA. For the first 5 years they had it listed as a severe mixed connective tissue disorder, because I was sick so young I think that added to the difficulty of a diagnosis (I was 13). The doctor at Children's hospital said it was ridiculous, I had almost all of the 11 criteria, he was going to officially call it Lupus and all my doctors since have kept the diagnosis. It is listed as Saysusie said, mine is called ANA-Negative Lupus. My insurance accepts it as such. I will have to go through my records because the fog is thick, but I do believe as Saysusie said, I have tested positive on the other tests she mentioned. Each time I get a new doctor, they go over the tests then officially accept my diagnosis. But I think the fact that I have so much organ involvement it makes the decision easier.

Numpty
06-16-2008, 02:48 PM
I'm another one here too! My dx is 'Probable SLE' but have never had a positive ANA blood test ~s~

Saysusie
06-16-2008, 03:06 PM
Lauri;
You are most welcome. The purpose of this site is to provide answers, give support, be understanding, give comfort and be a safe place for anyone with Lupus or any auto-immune/connective tissue disorder! We are here for all of you!

Peace and Blessings
Saysusie

KathyW1958
06-17-2008, 03:33 AM
I would like to say that I do think that it is possible to have Lupus without a positive ANA for many years as that is what happened to me. I believe that that is one of the reasons why the doctors would dismiss me. I mean I had only been tested for Lupus a few times and each time up until I was 36 the ANA was neg. When I turned 36 the ANA test was very pos. I think that eventually most people with Lupus will have a pos ANA at some point in their life. I just think that it is wrong to rely so heavily on the ANA test and unfortunately a lot of the doctors do weigh their diagnosis on the ANA and Sedrate.

Kathy

laurid8967
06-17-2008, 07:49 AM
Thank you all -
I think I am so paranoid to finally have a Dx and have them CHANGE their minds, that I wont allow myself to feel relief in finally having a Dx. (NOTE: Not that having lupus is a relief, as you all know, Im referring to "limbo" process only). I need to remain grateful that Im being treated as I have it, and that I finally have a doc who is listening. It is a HUGE improvement to even a year ago.
I have to say, I dont feel as well as I did last week. No swelling, no pain - that is still MUCH better with the steroids, but Im really lethargic, brain foggy, and I dont have a lot of interest in doing much of anything but being on the computer and watching TV. Im really tired....Im not sleeping well either - up and down all night - and I know that wont help anything. Oh well, such is life today, I will enjoy what I can and give the rest over..
Love and prayers (and thankyou all for your replies)
Lauri

Saysusie
06-17-2008, 10:45 AM
We all have those days when we are suffering from the fatigue. We do not like to call ourselves lethargic or tired or lazy....we are suffering from the debilitating fatigue that comes with having Lupus. Since this is a very real symptom of your disease, then you must do what is necessary to make it better, to recuperate from the fatigue and to regenerate. What that means is that it is ABSOLUTELY ALRIGHT to spend the entire day watching television or being on the computer or taking cat naps all day. That is actually your treatment for the symptom of fatigue! It is a necessary treatment for that particular symptom.
Don't allow anyone (including yourself) make the fact that you have to spend a day doing nothing a negative thing. It is not. It is a positive action in response to the Lupus fatigue. So, go ahead and allow yourself a full day (or even 2-3 full days, as I've had to do from time to time) to recuperate and regenerate!
Sorry for the lecture, but I want you to NOT feel bad about having a recuperation day.

Peace and Blessings
Saysusie

laurid8967
06-17-2008, 11:25 AM
Thank you so much Saysusie,
No need to apologize for the lecture - you are absolutely right. Again, its just adjusting to the limitations of the disease. I have beat myself up for YEARS about being "too tired" to do anything, and this was not helped AT ALL by certain family members. My husband has always been great, and is always fine with me "going up to rest" - he actually encourages it. But, I have had (like many of us Im sure) to deal with the constant, "Oh....you're STILL tired?" or "Didnt you just TAKE a nap?".... usually from my Mom (God Bless her). :roll:
The guilt I have always felt when I am suffering from that severe fatigue, when theres laundry to do, or shopping, or dishes - whatever - has been a MAJOR source of stress for me over the years. I will say, however, ever since Ive been "diagnosed", people around me are more accepting of my being "tired" (too bad they just couldnt take my word for it). I have tried over and over to explain to people, "Its not like tired - like from work, or at the end of a long day. I literally feel drugged, and will lay down and sleep on the street if I have to!" They act like they get it :roll:
It still amazes me, though, why people would think I would WANT to be in bed on a beautiful day, and not out enjoying life. Do they think this is a good time? uughh...frustrating. :mad: And my family knows me well enough that this is not who Ive always been. I graduated Magna Cum Laude from Suffolk Univ. here in Boston, WHILE I was working full time nights AND raising my daughter. I have ALWAYS been a go go go- type of person, working two jobs at a time usually, and involved in all kinds of other activities. Anyway, serves no purpose to get upset over it. I have to do what I have to in order to keep this disease at bay as much as I can. And I know you are right - that taking it slow and resting when you need to is just as important as taking medication, or any other type of instruction to feel well.
I am just really appreciative that you care, and though I think were in the same age group, its nice to have a "mother-type" person letting me know its ok to take care of myself. It feels good. :D
So thank you, as always, Saysusie. I am going to do what I can today, without doing too much, and try to get this disease to settle down. My son got out of school for the summer today (yeah!), so i will need to save some energy for him (He is the sweetest little boy - I call him Love on Legs..lol)
Enjoy your day today everyone - God Bless
Love and pryaers,
Lauri

Saysusie
06-17-2008, 11:46 AM
It is equally important that you eliminate stressors from your life. So, you must try to not stress out about those things that you are unable to do. Instead, congratulate yourself about those things that you were able to do. As I mentioned, the debilitating fatigue is a very real symptom of Lupus. We have to make accommodations for that fatigue. So, we must give ourselves credit for those things that we've accomplished that has not caused us to aggravate our fatigue.
Oluwa made a suggestion to another family member here and I've, personally, taken that suggestion to heart. She said, make a list of things that you want to accomplish during your day. Then, cut that list in half and, still, only do those things that you are able to do without aggravating your fatigue. I say, once you've done those things, GO REST and give yourself a BIG PAT ON THE BACK for getting them done and for not over-doing!
In this way, as you said, you can conserve energy to spend time with your "Love On Legs". It is imperative that you take very good care of YOU so that you can spend quality time with those that you love!
Have a wonderful day and, remember, as you said...rest, recuperation, and regeneration are also necessary medications for Lupus!

Peace and Blessings
Saysusie

laurid8967
06-17-2008, 12:19 PM
Thanks Saysusie -
Hey, the next resume I put together or if I apply for grad school - I will have to tell them that I graduated Magna Cream Soda!! I am cracking up right now!! I actually missed Summa Cream Soda by .15 of a point!!
LOLOLOL
Love it -
lauri

Saysusie
06-19-2008, 08:49 AM
That's hilarious!!! Where did you hear that? I'll have to share that with my God-Daughter who did graduate Suma "Cream Soda"

Peace and Blessings
Saysusie

laurid8967
06-19-2008, 09:04 AM
Saysusie,
On my earlier post, I actually wrote "Magna ... Laude" , but with the correct word in the middle. When my post went on the board, the middle word - three lettters - automatically came up Cream Soda!! It was an automatic thing from the website to block out bad words, yes?? lol. I thought you did it - it must be built into the program??
OMG - toooo funny!! Way to catch a "pottymouth" in action!!
Lauri

luvwine2007
06-19-2008, 12:45 PM
I had a positive ANA but now it is negative...so it can fluctuate!

Saysusie
06-19-2008, 11:45 PM
Luvwine2007;
Now that your ANA is negative, how are your other symptoms and test results?

Lauri;
No, it wasn't me. It is the website's built-in censor. So, that makes it even funnier to me! :lol:

Peace and Blessings
Saysusie