Author Topic: ANA 1280 titer speckled=Lupus?  (Read 8150 times)

itssue

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ANA 1280 titer speckled=Lupus?
« on: November 05, 2010, 04:47:11 PM »
Hi everyone,

I know it's been a long time since I was on line with all of you.  There are so many new names, that's good,  yet I hate to know so many more are living with all this.

My rhuemy recently sent me to a Hemotologist because my wbc was low again.  The hemo. took lots and lots of vails of blood and ran lots and lots of test.  All results were normal.  The only thing that showed up off the norm, was my ANA.  The results were a titer of 1280 with a speckled pattern.  The hemo said that to his thinking that would indicate Lupus, along with all the other autoimmune things I have. 

I have an appt. with rheumy next month.  I have googled the results and keep coming up with Lupus, also.  I'm just curoius if any of you have had your ANA results like this and been told different, or do they run more test for a  difinitive dx.?

Thx,
Sue

Navigator

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Re: ANA 1280 titer speckled=Lupus?
« Reply #1 on: November 05, 2010, 05:41:10 PM »
Lupus is not diagnosed simply by the ANA.  I am cooking dinner so can not go rummaging thru my files and I will for you later...but there is a lupus antibody that if you have it pretty much indicates thats that.  I have high ANA speckled and have SJS but not Lupus.  I also am positive for Anti Ro and Anti La antibodies.

Your Rheumy should do additional tests.  As one member of this board indicated SJS is a cousin to lupus ....I think she mentioned it is like lupus of the exocrine glands. 

Hashimotos, Primary SJS, Celiac
Synthroid, Plaquenil, Crestor, Evoxac, Meloxicam (if needed), Prednizone (if needed),Vit D, Fish Oil, Restasis

inga

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Re: ANA 1280 titer speckled=Lupus?
« Reply #2 on: November 05, 2010, 06:24:51 PM »
I have had a >1:1280 with speckled, then later it became speckled nucleolar, then totally nucleolar.  Also have low C4.  While I meet some criteria for Lupus, I don't have the antismith anti dna antibodies.  ANA patterns hint in a direction, but are not fully diagnostic.

You may have a +ANA with negative ENA.




navydad

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Re: ANA 1280 titer speckled=Lupus?
« Reply #3 on: November 05, 2010, 07:16:51 PM »
Inga,, what is ENA,, I hear you mention it often

nancylee

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Re: ANA 1280 titer speckled=Lupus?
« Reply #4 on: November 05, 2010, 07:34:07 PM »
I have had an ANA as high as 1:5600 speckled. I do not have lupus.

puccini914

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Re: ANA 1280 titer speckled=Lupus?
« Reply #5 on: November 05, 2010, 07:41:50 PM »
According to Labtests online, a Positive high ANA with a speckled patter can be (but not diagnostically conclusive) indicative of Lupus, Sjogren's and sclerdoma.
A positive Anti DS DNA is the one test that the docs pretty much recognize as definitive Lupus.  They won't say I have Lupus even though I have 6 of the 11 criteria (diagnostically, you need to have shown at least 4 at sometime in your life), because my Anti DS DNA has always been negative.  I also read on the labtests online that even positive SS-A and SS-B can be indicative of either SJS or SLE or both.  

All the labs that they do never seem to give you a 100% diagnosis.  There's always some other possibility lurking in the background.  

There is a wealth of information at     www.lupus.org  This is the main site for the Lupus Foundation of America.  There are even local chapters that often have support groups and local doctor recommendations.

I was diagnosed with Primary Sjogren's but my Rheumy is still having second thoughts about Lupus.

I hope this helps.

Peace be with you.

Jennifer

inga

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Re: ANA 1280 titer speckled=Lupus?
« Reply #6 on: November 05, 2010, 09:34:11 PM »
Navydad, in a nutshell:

ANA=Antinuclear Antibody Titer.  It means you have antinuclear antibodies in your serum.  Usually a finding over >1:80 is considered +, but >1:320, is fairly definitive.  Some labs only test to >1:1280.  The numbers climb quickly since one dilution doubles the finding.  In addition to a number, you also get a pattern, Speckled, Homogeneous, Nucleolar or Centromere.

The ENA=Extractable Nuclear Antigens, which are specific antibodies for the recognized diseases.  Scl 70 for Scleroderma, SSA-SSB for Sjogren's, Anti Smith, Anti DNA for Lupus  etc.

Technically the ENA should never be positive and the ANA negative....if that happens it is usually construed as a lab error, because the ENAs are antinuclear antibodies.

ANA is often positive with the ENA negative, thus leaving the dilemma as to what immune condition the patient has....thus called Undifferentiated Connective Tissue Disease.

In addition there are seronegative Connective Tissue Diseases, which are often hereditary conditions, such as Marfans, and others like it.  Those would not have +ANA unless the patient has comorbidity.

Lesleybird

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Re: ANA 1280 titer speckled=Lupus?
« Reply #7 on: November 06, 2010, 12:24:50 AM »
  Hi,   Your ANA is as high as mine and I have a Speckled pattern too.  The doctor needs to do more tests to see which specific antibodies that you have.  I only have the RO antibody and my doctor just says that I have autoimmune condition. You can google diagnostic criteria for Lupus and you must have at least 4 on the list to have a Lupus diagnosis.....I have 6 on the list but my doctor says he does not like to give people a diagnosis of Lupus on their chart because it can cause problems when trying to get health insurance if you have the diagnosis of Lupus written in your chart. The Ro antibody also points to Sjogrens, but I do not fill all of the criteria for it.  Some people have organ threatening disease with Lupus, and about a third do not have any major organ problems from it but just some symptoms like joint pain, rashes and fatigue. One of the worst antibodies to have that almost assures a diagnosis of Lupus is anti DS-DNA. Hope you don't have this one.

  People with a diagnosis of Sjogrens usually have the RO antibody (also known as SSA), and or the LA antibody (also known as SSB) and also must have met the criteria for Sjogren's Syndrome (google it also). A speckled pattern in and ANA can be in Lupus or Sjogrens as stated in the literature on the internet.
               
                        Have your specific antibodies tested and go from there. Even if you have certain antibodies everyone's body has its own expression of these antibodies so that each person has their own version of the disease.  Hope your version is not a bad one.                 Lesley

irish

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Re: ANA 1280 titer speckled=Lupus?
« Reply #8 on: November 06, 2010, 12:29:45 AM »
Thanks for the info Inga. This can get so confusing at times.

I have had ANA 1:640 speckled and my immunologist told me last appt that I sure remind him of a "lupus" but my  anti DNA stays negative.

I agree that we sit and wait anxiously for our blood work to see what is what. Actually, the blood work is important to a certain degree. However, a person can have such screwed up symptoms that it is hard to really nail down a diagnosis. I get an area on my left elbow that I swear is psoriasis and it takes a stronger steroid cream to get rid of it. I have never been diagnosed though. One doc that got to see it told me it was dry skin but I don't agree. It burns like crazy and nothing helps until I put the steroid oint on it.

Thanks for this info. Irish ;D

gurs

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Re: ANA 1280 titer speckled=Lupus?
« Reply #9 on: November 06, 2010, 06:01:38 AM »
My doc said to remember, when your on alot of medications, prednisone, etc..it can  alter blood tests. It also depends on the doctors..one will tell you
you have one thing, and then another will tell you something else. Ive been diagnosed with SS and lupus by 4 reputable doctors, yet I dont test positive for the anti-DNA (lupus) and I also have every indicator of vasculitis, yet I dont show positive on the ANCA labs either?.....again, maybe because Im on high dose steriods..etc,,who knows..
I think the most difficult part of autoimmune is the diagnoses.  Which one(s)do I have? All I know with Sjogrens is the extreme dryness is a great indicator. The treatments
are basically the same anyways, and SS can be just as debilitating as Lupus, as alot of us are aware of.

Gursie
50 years old.Primary SS, Lupus, Raynauds, POTS, Hormone issues from Hyster-menopause, systemic candida,osteoporosis,Gastroparesis, chronic neuropathy, migraines, sinus/dental issues. selective immune def/low t-cells.
Prednisone & medrol , plaquenil, diflucan, bio-estrogen creams,many supplements

Babs659

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Re: ANA 1280 titer speckled=Lupus?
« Reply #10 on: November 06, 2010, 06:41:22 AM »
My ANA was 1:1280 homogenous, which would lean towards Lupus, but I don't meet the criteria symptom wise.

inga

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Re: ANA 1280 titer speckled=Lupus?
« Reply #11 on: November 06, 2010, 09:09:32 AM »
To make matters more complex, patterns change.

I was ANA+ before my IVIG, but IVIG will cause +ANA, as will other meds.  ANA has, I believe a 21-30 day half life.  So it would take 4 months before the ANA could be done without the effect of IVIG.

ANA is somewhat subjective.

ANA by Elisa is very accurate, and is stated as a decimal number, has very few false +, BUT, it only results in having an ANA done by immunofluorescence since Elisa is not specific....it measures only antinuclear antibodies.

+ANA can be present normally in older people, but usually in low titers.  By the time you exceed the 1:320, on more than one occassion, it is highly likely you have an autoimmune issue.

I think MANY people have +ANA and a negative result on ENA, or specific disease.  UCTD will be a growing diagnosis.

With the current health care law, in terms of insurance, shortly, you should not be discriminated against with a pre-existing condition, but, who knows, things will change.

I wonder if seropositive SjS will be merged into Lupus?

puccini914

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Re: ANA 1280 titer speckled=Lupus?
« Reply #12 on: November 06, 2010, 10:15:41 AM »
I know that the docs try to protect our future by avoiding the SLE diagnosis, but it was my doctor's notes regarding most likely Lupus that got my approved for SSI during my hearing.

I was Imuran early on in my illness, and although it never made me feel any better at all, it made all my labs go negative.  Of course this happened with the Dum-Dum Rheumy and at the next visit he looked at the labs and said, "I don't believe you have an inflammatory disease."  He then took me off all meds, Prednisone, the Imuran and even the Plaquenil.  Just stopped everything with no tapers or anything.  Luckily, I had enough Pred to taper off it myself.  This however, through me into the worst flare ever.  I saw my primary and he immediately put me back on the Pred and the Plaquenil and we started the hunt for a new Rheumy.

Peace be with you all.

Jennifer

inga

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Re: ANA 1280 titer speckled=Lupus?
« Reply #13 on: November 06, 2010, 11:58:04 AM »
Which is why, once established, that ANA can not be used to monitor disease activity.
It doesn't pay to keep getting the ANA done, since, the rheumatologist will seize the ONE negative test one has to de-diagnose....which is a big trend lately.

Two + ANA's and you are supposed to be diagnosed with AI disease.

I think with Rheumatologists, they seem to need an extremely strong serum indicator, AND the ENA to diagnose.  Quite possibly this is because of the nature of the next generation of drugs being released for AI treatment.

As far as protecting from insurance discrimination, it isn't just the diagnosis....they look at the medications that people are on, and make decisions based on that too....as well as lab tests.  Hopefully if you need to qualify for private insurance, the law will protect you from pre-existing clauses. 

I see given the meds you are on, that you would want to try Benlysta when it comes out.  Just familiarize yourself with risk.  The fact that you may have to wait a few years, may be good....it's cautious.  Better than running off the cliff like a lemming.  Wait to see what the stats are on the drug. Right now, I am not convinced....placebo varied little from the drug group in benefits.  But it will be a blockbuster drug, like Rituxan.

What concerns me about mab drugs with Lupus, is they are saying our risk for PML is already higher?  I want more data on that.  Why is our risk higher?  How does a mab affect that risk?  Etc.

puccini914

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Re: ANA 1280 titer speckled=Lupus?
« Reply #14 on: November 06, 2010, 01:18:08 PM »
Well it was crazy, I had had 6 positive, 5 really high positive ANA's and one comes back negative while I'm on Imuran and the guy throws everything out the window.  Then he was convinced it was all Fibro, and starts trying me on every Fibro drug out there, even though I had none of the tender points.  None of those meds did a thing for me, except Neurontin which mellowed out some of the pins and needle stuff.  Back then, I didn't really have much Neuropathy going on, it was the hives, fatigue and major joint pain in my hands and feet with lots of heat and swelling.  On my last appointment when he said the comment aout not having an inflammatory disease, my hands were burning hot to touch, red and swollen.  I put my hands out and said, "what exactly is your defination of inflammation" and walked out.  That was the last I saw of him.

Peace

jennifer