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So many Lupus symptoms but negative ANA?
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srebecca79 posted:
I'm very frustrated because I've been having so many health problems for 6 years and many of my symptoms point to Lupus. However, the ANA has been tested a few times and it's always negative. I'm 32, I have arthritis in my back which is said not to be associated with Lupus..but I also have arthritis in fingers and wrists, pain in ankles and feet, and a deep aching pain in my hips. My face is almost always red. I get headaches all the time, frequent mouth and nose sores that are gone a few weeks then come back, and I lose a lot of hair. I have low estrogen and might be going into early menopuase.I'm sun-sensitive; I am fair but it's not the sunburn that concerns me; I don't get rashes but after being in the sun, even if it's half an hour, I get severe headaches, nausea, fever, and a general ill-feeling.

Also, over the past 5 years I get frequent infections. For about 2 years it was UTI's, then the last few years, it has been chronic bronchitis. I saw an immunologist and found out I have immunodeficiency. Some of my blood tests come out slightly abnormal; for example, I've had a high SED rate, blood in urine, low calcium, albumin and potassium but it's never looked into. My PCP thinks I have fibromyalgia but it doesn't sound right to me. Some of the symptoms don't add up. I'm wondering if there's a possibility that I have Lupus even though my ANA has been negative? I have read that it's possible. If not, what else could be going on? I'm hoping to get a response from the doctors on here. Thank you
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lupylisa44 responded:
Hi and Welcome!

This question has been asked many times on this board. There are just as many answers as there are questions. Recently , I posed this question to Dr. Venuturupalli (our resident expert) Here is that post:

Lupylisa44 posted: I read so many posts on this board where people who are initially diagnosed with lupus have a positive ANA then, when re-tested, their ANA is negative and their doctor wants to reverse the lupus diagnosis. Most of these patients are still symptomatic.

It has been my experience in the 28 years that I have had lupus, that my ANA has been negative on several occasions, but there has never been any doubt that I do, in fact, have lupus.

I know that there are many causes for a positive ANA, but does a negative ANA mean someone doesn't have lupus? Is there cause for these doctors to change their minds, or is it that many doctors just know so little about lupus, that they doubt their original dx?

It would be great if you could shed a little light on this for all of us.
******************************************************************* R Swamy Venuturupalli, MD, FACR replied : Excellent question. It has certainly come up several times in this forum. However, this is a controversial topic and I'm not sure I have a satisfactory answer.

Let me try to address the issues that you've raised.

Anti-nuclear antibodies are found in a variety of autoimmune diseases including RA, psoriasis, myositis, scleroderma etc. In lupus over 90% of patients have a positive ANA. A high titre of ANA over 1:160 is generally seen in lupus patients. Titres of 1:40 and 1:80 have been reported in about 30% and 14% of the general population respectively, i.e. patients without autoimmune disease (false positives).

They are usually measured using a technique called immunofluorescence (where a flouorescent dye is tagged to a standardized cell that been incubated with a patients serum). Based on how avidly the antibodies bind to the nucleus of standardized cell, titres are reported. The higher the titre, the greater the amount of anti-nuclear antibodies. This method of testing is the gold standard. There are newer methods of testing ANA's such as ELISA which have demonstrated accuracy comparable wit h the gold standard.

Occasionally, an ANA may be negative when tested by ELISA and positive when tested by immunofluorescence or another method.

Occasionally, patients with autoimmune disease have negative ANA's. In such situations, if doctors feels strongly that the patient has an autoimmune disease, a careful search for an autoimmune disease is conducted including looking for other antibodies such as anti-Ro etc.

Occasionally, the ANA tests turn negative especially with treatment.

In short, to answer your question, positive ANA titres are seen in most patients with lupus, occasionally they can turn negative with treatment, and rarely we see lupus patients with negative ANAs. ************************************************************** I hope this helps answer your question. Lupylisa
With love, with patience and with faith, we'll make our way.
 
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lupylisa44 responded:
Lupus and Fibromyalgia have many overlapping symptoms so it is difficult to differentiate between the two. Were your ANA tests run when you were having symptoms or not? When I am not symptomatic my ANA has been negative on several occasions but there is no doubt that I do, in fact, have lupus.

If your doctor is willing, maybe you can arrange to get tested when you are having symptoms.

Another thing you can do is start a health journal to document symptoms on a daily basis. Document everything: how you feel, what you eat, your temperature, any pain, swelling, rashes, sores or redness (take pictures if you can because odds are that it wont be there on the day of your appt.) In doing this, patterns and triggers that you were previously unaware of may emerge.

How did you find out that you had low estrogen? Was it tested? That, alone, can cause lots of strange symptoms. Did you also have your thyroid tested? You might want to follow up with an OB GYN or endocrinologist for a complete hormone panel and to see if hormone supplementation would benefit you.

I am curious, did the immunologist have any explanation for your immunodeficiency? Why wasn't it explored further?

If there is one thing I have learned in the 28 years as a lupus patient is that You have to be your own advocate! You must insist that follow up test be done! Remember, YOU are paying the doctor, he works for you! Sometimes you have to be forceful and demand answers!

Lupylisa
With love, with patience and with faith, we'll make our way.
 
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leecat41 replied to lupylisa44's response:
This has stumped me for a long time as well. I've had several doctors to strongly feel that I've got lupus but my ANA tests have all been negative. But I didn't know until I joined this forum that it might not show up if not tested at the right time. I guess I had enough of the symptoms to determine the lupus because that's what the rheumy was treating me for before I stopped going. I have to admit, I'm one of those people who tend to think that if the test didn't say postitive it's the same as not having it. That line of thinking hasn't really gotten me very good results though so now am swollowing my pride and heading back to the rheumy.
To do what is right is not always easy, to do what is easy is not always right.
 
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srebecca79 replied to lupylisa44's response:
Hi Lupylisa..thanks for your replies. My ANA has been done about 3x over the last few years; I'm always having some type of symptoms, there is rarely a time when I feel good or "normal".

I found out that I had low estrogen when I was tested by a dermatologist that I was seeing for hair loss. I did see an OB GYN recently and all they told me was to take OTC estrogen supplements. I had a tubal ligation done in Feb 2011 and the dermatologist said that can cause early menopause. My thyroid has been checked numerous times and it's always normal.

The immunodeficiency was never figured out. He said I had a high sed rate for unknown reasons more than 1x . I recently moved out of state and all I have is state medicaid so I I don't have many options. I have been persistent with the ones I've seen but they just pass me onto other drs because they don't know what's wrong with me. I've seen so many specialists in the last 6 yrs it's unreal.

I really need to see a rheumatologist, that's a specialist I have yet to see... but I just found out that my PCP is not even employed there anymore..so now I have to start over with a new dr. and see if I can get a referral. What are some other blood tests they do for Lupus?
 
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lupylisa44 replied to srebecca79's response:
There is no single blood test for diagnosing lupus. Systemic Lupus Erythematosis (SLE) is diagnosed using 11 criteria. IF you have 4 out of 11 it is likely you have lupus.
  • Face rash, which doctors call a malar rash, that is butterfly shaped and covers the bridge of the nose and spreads across the cheeks
  • Scaly rash, called a discoid rash, which appears as raised, scaly patches
  • Sun-related rash, which appears after exposure to sunlight
  • Mouth sores, which are usually painless
  • Joint pain and swelling that occurs in two or more joints
  • Swelling of the linings around the lungs or the heart
  • Kidney disease
  • A neurological disorder, such as seizures or psychosis
  • Low blood counts, such as low red blood count, low platelet count (thrombocytopenia), or a low white cell count (leukopenia)
  • Positive antinuclear antibody tests, which indicate that you may have an autoimmune disease
  • Other positive blood tests that may indicate an autoimmune disease, such as a positive double-stranded anti-DNA test, positive anti-Sm test, positive anti-phospholipid antibody test or false-positive syphilis test
  • With love, with patience and with faith, we'll make our way.
     
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    srebecca79 replied to lupylisa44's response:
    Thanks again for your reply. I am seeing a next doctor, luckily at the same office as my prior dr so he'll have access to my records. I'm going to push for a referral to a rheumatologist as I do meet at least 4 of those criteria.
     
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    angieOU replied to lupylisa44's response:
    I'm very confused with my illness and hopefully you can help. I've been diagnosed with lupus by 3 different doctors. It's been 15 years and with time came more and more symptoms. The first 8-9 years my ANA was anywhere from 1:160 to 1:1280 (I think that second number is correct). Anyway... One day my ANA just randomly went negative and now my rheumy says I don't have it. Although I have the rashes, pain, occasional protein in my urine, newly confirmed 15mm cysts in my left kidney, low platelets, sun sensitivity, joint pain, extreme fatigue, headaches, brain fog, mouth, nose and vaginal ulcers, general ill feeling, and now my muscles are deteriorating on the left side of my body with weakness beginning. I'm having esophageal problems as my food won't move past a certain point (per my swallow study), and the list goes on! I feel that the instant the ANA reduced that he stopped treating me. How else do I explain the worsening symptoms? The sun rash and kidney problems just started 2 years ago after the ANA dropped. What do you suggest I do? I feel like I'm getting worse but he's not treating me because of a low ANA. How is it that you can have nearly ALL the points on the list but miss the ONE point that happens to be the ANA and it makes it a complete game changer? It's so frustrating and depressing. HELP!!
     
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    Angelina7 replied to angieOU's response:
    Hi Angie -I am Angelina! So sorry to hear all u have been thru! Ironically it sounds alot like mine - same issue w my Ana's initially very high then it dropped off but symptoms worsened to point that we r trying Humira now (very scary!)!!! Have u ever tested for MS??? I am tested every few years bc symptoms r overlapping. Just a thought - I don't mean to scare u, ok?! Hang in there - idk how I am!!
     
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    DarkMystic replied to angieOU's response:
    That really sounds much more like dermatomyositis than Lupus. It has overlapping symptoms, but the photosensitivity and facial rash can be part of dermatomyositis but is categorized by progressive muscle weakness.
     
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    LK2012 responded:
    Please have a FULL thyroid panel done. Especially your Free T3, everything your describing sounds more like under active thyroid. I went 20 years not being properly diagnosed. Fibromyalgia is not a disease its a syndrome, and most often it's a result from a under active thyroid. Doctors like to test the TSH and go by that level, but its a measure of a pituitary hormone. I hope this helps!
     
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    MaryBee replied to lupylisa44's response:
    I have had many symptoms of different autoimmune diseases. Started with blindness at age 28 recurring sight in 3 months with lots of steroids. I have also had a Positive ANA test reading 1:740 and was NOT diagnosed with Lupus which I still think it is. Can anyone share some light on this Please


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