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Thread: ANA Levels

  1. #1
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    Default ANA Levels

    I was looking at past entries to see what others have gone through. I have always questioned Lupus for me. The main reason is because the doctors did so often.
    For years I have had an ANA level around 1340. I don't know if that means anything to anyone out there. My doctor at the time said that the normal ANA is supposed to be 40 and I was 1300% above that. That is where it all started for me. I went from one specialist to another. I finally gave up. It was crazy to have so many different opinions and diagnosis.
    Here I am years later and I swear I am still dumbfounded! I was given a confirmed diagnosis, yet I am still so frustrated. Just going back and reading what everyone has gone through and how closely their situations mirror my own. No wonder so many of us question ourselves. My husband is furious with me because I will not go back to the doctor. I cancelled all my appointments. When I was having a bad flare I went to the doctor and they did their tests.

    The tests showed fluid around the heart and lungs. My doctor sent me to the lab to run more tests. After one of the worst flares I have ever experienced all my lab work came back NORMAL. I was astonished! I asked about the ANA levels that have not been normal in years and was told they were fine. She never put me on any medication for the fluid, just Prevacid for a bleeding ulcer. She said she wanted to send me back to the hospital for another echocardiogram and lung x-ray. I made up my mind right then and there I was not going back. I will not answer the phone when the hospital calls nor from her office.

    I might be very wrong in my thinking but this is what I have found out. One, those chest pains are not going to kill me. I have had all 8 symptoms of a heart attack and been in the hospital hooked up to their machines and all came out normal. Two, if I stay away from the doctors I perform so much better than when I am going every two weeks. My husband and I go round and round over this. He has even threatened to find a way to get into this support group and tell on me hoping I will be admonished into going back to the doctor.

    Nothing is going to change my mind. I am not scared anymore, I am just sick of doctors!! I feel so much for all those who have been given the run around and have beat themselves up over this. LOL, the phone is ringing and guess who it is......
    It is not possible to be worried while fully trusting in God.

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    Psalm 56 3 I am so afraid for you. I am serious big time. I have SLE and have had it for most of my life. I however did not get dx until I was 36 years old. I went through heck with the doctors and stuff for years and years. I, like you, gave up on the doctors and that decision nearly costed me my life. When I was 36 years old I ended up with Myocarditis and nearly died as a result of it. Myocarditis is inflammation of the heart muscle and you can die instantly from this situation. My heart was not beating normally at all. I could not breath normally as I also had Pleuresy and Costalchondritis and almost all of the symptoms listed to indicate Lupus. My blood work all showed positive. I believe that had I not gone to the doctor 12 years ago, I would not be here today. In fact my doctor, a Rheumatologist, told me so. I have been on medications for the past 12 years and will be on medication for the rest of my life. I am wondering if you have seen a Rheumatologist? Please, do not give up on the doctors. Lupus is not a disease that you can play with, it can kill you.
    Hugs,
    Kathleen
    Live one day at a time: It's easier that way

    Dx with SLE in 1994
    Dx with Sjogrens 1994
    Dishydrotic Eczema 1974
    Severe Osteo-Arthritis

    Meds:
    Imuran 125mg
    Plaquenil 400mg
    Sulindac (Clinoril) 400mg
    Soma prn up to 4 times a day
    Darvacet prn

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    Default Hello, Psalm

    I am a little confused by the ANA issue, because that is not a number that would normally occur in ANA testing. Different labs do have different testing methods and standards, so it's certainly possible your lab uses a different testing methodology, which would account for the difference.

    Most ANA results are reported as a titer (such as !:40) and a pattern (speckled, nucleolar, homegenous, etc.). The titer refers to the number of dilutions the blood sample goes through before ANAs are no longer present. Because the amount of fluid used in the testing process is doubled with each dilution - the titer number doubles also, so it goes up quickly. 40, 80, 160, 320, 640, 1280. 2560, and so on. The difference between 160 and 320 is only a single dilution, although the number seems a lot higher. So it can't really be calculated as a percentage above normal, the math doesn't work that way. I'm not explaining it very well, but hopefully you see what I mean.

    Lupus can never be diagnosed solely on the basis of an ANA test, because ANAs are not specific for lupus. They can occur as a result of a viral or bacterial infection, many autoimmune disorders, as a result of medications, or even in perfectly healthy people with no underlying disease. So, while most people with lupus will have a positive ANA, many people with a positive ANA will not have lupus.

    I know this is extremely confusing - I wish there were a simple way to explain it that doesn't sound like a tongue twister. But basically, there are many reasons other than lupus for a person to have a positive ANA, so a doctor must look at all the patient's symptoms and lab results to make the diagnosis. Estimates are about 3% of the general population will have a positive ANA. This percentage increases as people get older. These people are considered to have a "false-positive ANA".

    About 90-95% of people with lupus or mixed connective tissue disease will also be ANA positive. About 85% of people with Scleroderma and Sjogren's syndrome have a positive ANA; up to 45 percent of people with autoimmune thyroid conditions or rheumatoid arthritis and up to 15 percent of people with HIV or hepatitis C can also have a positive ANA test result, Plus, there are about 100 different medications that can cause a positive ANA, including many blood pressure medications and beta blockers. So a negative ANA can sometimes rule out a lupus diagnosis, but a positive ANA can never be the sole basis for a lupus diagnosis. It is one of the diagnostic criteria, but a patient generally needs to have four of the 11 ACR criteria to be classified as having systemic lupus.

    Even though my ANA was extremely high when first tested (1:10,240), my rheumatologist based my final diagnosis (lupus/scleroderma overlap with sjogrens and autoimmune anemia) on the results of other lab tests and symptoms, including several biopsies. I was frustrated because it took so long for him to decide on a definitive diagnosis, but he told me it was very important to have a complete picture, because some drugs used to treat lupus actually accelerate the progress of scleroderma.

    Did the doctor who diagnosed you ever explain the criteria he used for diagnosis, other than the high ANA? Do you have any of your old medical records that might have test results? Knowing how he came up with the diagnosis might ease some of your concerns about the issue. Fluid around the heart and lungs could be caused by lupus, but can also be caused by COPD, congestive heart failure, and a number of other medical problems. Whatever the cause, it does need to be treated!!! So please see your doctor. An echocardiogran is quick and fairly painless (just some pressure) - a spiral CT is completely painless and takes less than 10 minutes -please have the tests done! It will make your dear hubby happy and us too!!!

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    I have to admit I still do not understand the whole ANA thing. I just recall my doctor telling me that my ana was 1,300% higher than the normal person. I have been to numerous rheumatologists, in fact I went to the leading Rheumatologist in our area. He told me that I had Fybromyalgia and many of the Lupus symptoms. He told me not to go crying to my primary care physician or any other doctors because they would put me on medication for Lupus if I whined enough about it. That made me livid! I was so angry because I did not want to see the Rheumatologist in the first place. Honestly I am so tight lipped about myself. So for a doctor to insinuate that I would go crying to another doctor was plain ludicrous! It was at that point I quit going to the doctors all together and that was back in 1995.

    A few years later I became very sick. I literally became bedridden for a spell. I remember having to crawl to the bathroom. One day my daughter came home early and was shocked to find me in bed. So she and my husband convinced me to go back to the doctors. The new doctor I went to ran so many tests that I had to see her every two weeks. She came back with a confirmed Lupus diagnosis. I recall her telling me that I was not taking the disease serious enough. How could I when the specialist said he didnít think I had it! So I limped along for several years. In 1999 I moved and went to a new Internist. She in turn sent me to another Rheumatologist. Of course he ran his battery of tests and said that all though I had numerous symptoms he felt I did not have it because the Mylar rash was not present. I told him that I did in fact have the Mylar rash. He had me was my make up off and said, "Oh I guess you do have Lupus." Like that made a real believer out of me! The only reason he was going to say I had it was due to some rash on my face! Geesh

    He did put me on a drug for Lupus. I am not sure what it was but I had to have my eyes checked every other month. I think I took the medication for a few weeks and stopped. The only time I went to my doctor was for a renewal on Synthyroid and blood work for the thyroid. All those times I went to her she never brought up the Lupus so I felt it was a thing of the past. I am beginning to see things now that I did not see before. It is like putting a huge puzzle together. I remember going to the doctor 3 years ago complaining that I could not breathe. I am not a smoker and have never had asthma so I found it odd. What did they do? They prescribed an inhaler for me. After a couple of months the problem went away. It would come and go through out the years. When the chest pain started that was a little scary. I did not go to a physician right away, I waited until it became very painful. Then I went to the emergency room and I was admitted and they kept me over night. While I was there I did have severe chest pain and they gave me an EKG and put a pill under my tongue.

    Even then they found nothing. I passed all the tests with flying colors. As a matter of fact they had a difficult time even getting my heart rate up on the stress test. So I went back to my doctor like they told me to. I asked her what my problem was and she said she had no idea. Back in September of this year the chest pain was unbearable. I could no longer hide it from my family. I finally broke down and told them because I was scared to death something might happen to me while I had my grandchildren. I take care of them everyday. I had an echocardiogram done and it showed fluid around the heart and an x-ray showed fluid around the lungs. My doctor looked at the test results and said she wanted them done again and would see me back in 4 weeks. She didnít seem too concerned to me, and I learned not to be so frightened every time it feels like I am having a heart attack. I have been taking Naproxen which from what my doctor said helps eliminate the fluid. Honestly I had been doing great with almost no symptoms at all until I went to the dentist. I know this is long, but I am hoping you will better understand where I am coming from. Also, I really do appreciate all the support and advice.
    It is not possible to be worried while fully trusting in God.

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    If the fluid build up is from inflammation, then anti-inflammatories may help resolve it. If you notice more difficulty in breathing, especially at night, or start to cough up foamy stuff, you need to get back to the doctor asap. Pulmonary edema can cause you to literally drown. If anti-inflammatories don't work, you may need steroids and diuretics.

    I'm always amazed at how demeaning, callous, and downright ignorant some doctors can be - it makes you wonder how some of them got through medical school. Unfortunately, what you're describing sounds typical of the way many doctors treat women patients - like we're hysterical hypochondriacs - [pardon the alliteration.

    If there is one doctor you feel comfortable with, it would definitely be a good idea to go back. So much of what you're describing sounds like lupus flaring up. The medication you were taking where your eyes had to be tested was probably plaquenil. I know you are disgusted with doctors, understandably so, but this needs to be checked out and treated aggressively.

    If you can find a cardiologist knowledgeable about heart disease in women, that would be ideal. Many doctors don't realize that a treadmill test is rarely accurate in women, so a different type of work up may show problems the stress test missed.

    Please don't give up on doctors altogether, you are too important to your family to let this go untreated!

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    I had been taking Naproxen and then stopped. Thinking back it really did help. So I am taking it again. I have also noticed a marked improvement in my breathing. Especially if the air is cool and low to no humidity. I have not been coughing at all so that is a good sign. I think I am back on track.

    The doctors really are horrible. That is what makes this so hard to take. I feel for all those women out there that are second guessing or even questioning themselves. For me personally I know my body and I am not going to allow anyone to make me feel like I am a hypochondriac or just looking for attention. I have a high tolerance for pain and for the most part I usually ignore signs my body is giving me. Typically I push it to the extremes. So when a doctor tells me to "Not go whining to another doctor" I know he is the ignorant one and not me!

    I found my medical records and it is like reading Chinese! However; I was able to decipher a few things from it. It might make sense to you but it still foriegn to me. It reads as follows, and keep in mind this was in 1995:
    ANA Screen positive
    ANA Speckled negative
    ANA Homogenous => 1:1280
    ANA Nucleolar negative
    ANA Peripheral negative
    ANA Quant <20

    Apparently when I went to this Rheumatoid Specialist in 95 he ruled that I did have Rheumatoid arthritis, Fybromyalgia and stated that I appeared to be in the early stages of Lupus. Let me know if any of this makes sense to you...and thanks for all the help. It really does put my mind at ease.
    It is not possible to be worried while fully trusting in God.

  7. #7
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    It would certainly be a good idea to have these tests re-done, because in 1995 the testing technology wasn't as advanced as it is now. Plus, ANA levels can go up and down over the course of the disease, so you certainly shouldn't base medical decisions on test results that are 11 years old.

    Most labs report ANA results as a"titer" - like 1:80 - and a "pattern". The ANA pattern is determined by looking at a specially prepared slide under a miscroscope. By examining the slide, the technician can determine where the ANAs are attacking the cell nucleus. Certain antibodies attack certain areas of the nucleus, producing specific patterns which can be seen under the micrpscope.

    The rim (peripheral) pattern is the most specific pattern for lupus, while the homogeneous (diffuse) pattern is the most common pattern seen - it can appear in both systemic and drug-induced lupus. A nucleolar pattern is seen in scleroderma and a centromere pattern in the CREST variant of scleroderma, so the pattern can help the doctor decide which of the autoimmune diseases is causing the problem and which treatment program is appropriate.

    The homogeneous/rim ANA pattern can be caused by: antibodies to double and single-stranded DNA (seen in SLE in high titers and in lower titers in other rheumatic diseases),; and antibodies to histones (seen in drug-induced lupus), and eoxynucleoprotein (seen in SLE). So, unfortunately, your ANA results (the homoegenous pattern) could indicate either systemic or drug induced lupus, or another rheumatic disease such as rheumatoid arthritis. So any diagnosis would need to be based on more testing, and your clinical symptoms.

    I am glad you are feeling better - hopefully the anti-inflammatory meds are helping.

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    Hi Marycain,
    I am wondering, is the speckle pattern ANA most commonly seen in SLE along with Sjogrens? I am wondering about this, becuase this is the pattern that my ANA is and I was diagnosed with SLE in 1996.

    Hugs,
    Kathleen
    Live one day at a time: It's easier that way

    Dx with SLE in 1994
    Dx with Sjogrens 1994
    Dishydrotic Eczema 1974
    Severe Osteo-Arthritis

    Meds:
    Imuran 125mg
    Plaquenil 400mg
    Sulindac (Clinoril) 400mg
    Soma prn up to 4 times a day
    Darvacet prn

  9. #9
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    Default Hi, Kathleen

    The most common pattern in ANA testing is the homogenous or diffuse pattern. A speckled pattern can be caused by several antibodies: Smith (Sm), which is usually seen only in SLE; nuclear RNP, which is seen in high titers in mixed connective tissue disease (MCTD) and SLE; SS-A (Ro), which is seen in Sjogren's syndrome and SLE; and SS-B (La), which is seen in Sjogren's syndrome. So the speckled pattern is consistent for both SLE and Sjogrens, but unless your doctor ordered an antibody subset panel, you don't know from the ANA test by itself which antibodies are causing the speckled pattern.

    Because SLE and sjogrens are separate autoimmune diseases with different diagnostic criteria, I don't know of any one test that would be specific for both diseases. But it's certainly common for lupus patients to also have Sjogrens. Women can also have Sjogrens by itself as a primary autoimmune diseases - this form of Sjogrens is usually more severe than the "overlap" form most lupus patients have, and can cause life-threatening heart complications in its most severe form.

    Hope this helps!

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    I see now what you are saying. My doctor told me that the Sjogrens is an overlap of the SLE. I can not remember what he said about RO or LA. He just told me that I had classic SLE. At the time I presented with 9 of the 11 symptom criteria for Lupus. I had a malar rash big time as well. Oh, I am glad that I asked.

    Hugs,
    Kathleen
    Live one day at a time: It's easier that way

    Dx with SLE in 1994
    Dx with Sjogrens 1994
    Dishydrotic Eczema 1974
    Severe Osteo-Arthritis

    Meds:
    Imuran 125mg
    Plaquenil 400mg
    Sulindac (Clinoril) 400mg
    Soma prn up to 4 times a day
    Darvacet prn

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