Author Topic: ANA is nucleolar now  (Read 4885 times)

inga

  • Guest
ANA is nucleolar now
« on: March 29, 2010, 12:30:28 PM »
OK, so after the nurse called me and told me how happy I should be that my ENA was negative, she volunteered to send me the results....AWWWK, my ANA is 1:640 Nucleolar.  Cripes!  This could explain why I am so freaking sick.

Does any one else have a high nucleolar pattern ANA?

DragonflyC

  • Hero Member
  • *****
  • Posts: 1186
    • Sjogren's Style
Re: ANA is nucleolar now
« Reply #1 on: March 29, 2010, 12:59:02 PM »
Ugh.  I hate when I realize that the "good news" someone at my doctor's office is calling me with actually isn't ("Um, no 3.5 is NOT a 'normal' TSH for me"). 

My ANA tests always have a speckled pattern, which is the pattern most closely associated with Sjogren's. 

I'm sorry to hear that your ANA is so high (mine is usually 1:640, too).  I hope that you get some answers soon. 
SJS, Hashimoto's, Raynaud's
Plaquenil, Evoxac, Restasis, Levoxyl, fish oil supplements, Vitamin D, NSAIDs, prednisone when flaring
Tested positive for SS-A ( > 8 ) and ANA (>1:640)

Visit me at http://sjogrensstyle.com for ideas about living well despite autoimmune disease.

inga

  • Guest
Re: ANA is nucleolar now
« Reply #2 on: March 29, 2010, 01:08:11 PM »
Thanks Dragonfly.

My ANA has been higher.  They only go to 1280 at most labs in our state....so they tell you it's >1280.  Up to now, I was speckled and speckled nucleolar, >1280....not just nucleolar!  Ugh.  Yeah, I am a nurse, and I can tell you the one that called me, knew nothing of ANAs or ENAs lol.....this is NOT good news.  It is hideous news.  Harummph.....I told them I was sick.  I do know the levels change and the pattern can change, but, since I am still wrangling with diagnosis, this is significant, especially since things have changed for me healthwise.  I think I will hide in my bed with a blankie over my head.

Joy Cox

  • Guest
Re: ANA is nucleolar now
« Reply #3 on: March 29, 2010, 01:12:54 PM »
Igna and DragonflyC, My last Anti-Nuclear Antibody Screen indicates  * Positive w/Reference should be neg.
Level  is 1:40 speckled    

Can either of you explain what is normal range for ANA or does it depend of lab that runs it?  

Any explaining of this will be greatly appreciated.

DragonflyC

  • Hero Member
  • *****
  • Posts: 1186
    • Sjogren's Style
Re: ANA is nucleolar now
« Reply #4 on: March 29, 2010, 01:34:46 PM »
Hi, Joy.

1:40 is a positive ANA, but it's consider a low positive.  That's what I had when I first got sick, and I was lucky to have a doctor who took it seriously even though it wasn't an especially high titer.  I don't know what the "positive w/ reference" bit is about.

This article does a pretty good job of explaining: http://arthritis.about.com/od/diagnostic/a/ana.htm

This one is also helpful: http://www.labtestsonline.org/understanding/analytes/ana/test.html

A positive ANA test indicates that you may have autoimmune activity in your body.  A doctor must then look at your symptoms and, usually, additional blood tests to determine if you do have a AI disease and, if so, which one. 
SJS, Hashimoto's, Raynaud's
Plaquenil, Evoxac, Restasis, Levoxyl, fish oil supplements, Vitamin D, NSAIDs, prednisone when flaring
Tested positive for SS-A ( > 8 ) and ANA (>1:640)

Visit me at http://sjogrensstyle.com for ideas about living well despite autoimmune disease.

Daisy1234

  • Guest
Re: ANA is nucleolar now
« Reply #5 on: March 29, 2010, 01:39:58 PM »
My ANA level varies, but it has been 1:640 and above many times.  I agree with Dragonfly reference the ANA level and positive standing.  However, I do know that my disability insurer won't recognize a person as being autoimmune if their ANA is below 1:80.   Just so you know.

inga

  • Guest
Re: ANA is nucleolar now
« Reply #6 on: March 29, 2010, 01:41:48 PM »
Thanks Dfly,

I was just going to post the labtests online myself.

One other ANA test is the Elisa.  It is a screening tool.  It is highly accurate, but, not specific, since no pattern is given.  3+ years ago, mine was 2.57...
norm is 0-.9.  If your Elisa is +, then an IFA or ANA by immunofluorescence is done, and if that is +, then an ENA is done.  Every now and then a person is higly + with ANA and has a negative ENA....that always poses a diagnostic quandry...then they must go on pattern and on symptoms....which they always consider anyway.

Usually docs don't even do much if you are 1:160.  Over 320, they pay more attention....over 640, they usually admit autoimmunity.  It depends what reference you use on ANA, I have seen some that say + is 1:80.

ErinG

  • Full Member
  • ***
  • Posts: 222
    • erbegu's journal
Re: ANA is nucleolar now
« Reply #7 on: March 29, 2010, 01:55:00 PM »
My lab's reference is 1:80 or greater is clinically significant.  Mine was 1:320 speckled about a year ago when I was diagnosed.
Female, Age 32 - full-time accountant
Diagnoses: Primary Sjogren's, Raynaud's, Distal RTA, Stage 3 Chronic Kidney Disease, Interstitial Nephritis
Meds:  Plaquenil, Cellcept, Urocit-K, hydrochlorothiazide, potassium chloride, Restasis

inga

  • Guest
Re: ANA is nucleolar now
« Reply #8 on: March 29, 2010, 02:32:21 PM »
ENA is extractable nuclear antigens.....

There are likely hundreds if not thousands of antibodies that can attack the nucleus of the cell.  They have identified very few at this time, but the few they have found are, the rnp's, smith, SSA, SSB, scl 70, Jo and a few others I am too addled to think of.

When an ANA is +, it usually means the body is making autoantibodies against the nucleus....a part of the nucleus, usually the part that has something to do with replicating DNA, from what I can gather.

They looked at people with certain diseases and found that a % of them have these antibodies, so they test for them on all + ANAs.  If you have a + ANA and negative ENA, it means they did not find these more common antibodies.....if you have them, it helps them identify your disease....you are fully seropositive so to speak.

If you have + ANA and negative ENA, diagnosis is a bit more problematic.....and this happens....so then they try to take a clue from the ANA pattern.  Certain patterns are more common in certain diseases.  Nucleolar is more common in Scleroderma or Polymyositis.  Speckled or speckled/nucleolar is found more in SjS.  Homogeneous in Lupus, anticentromere in Scleroderma.....however, none of this is written in stone....you can have any disease with any pattern.

Over 1:320 is almost never normal.....under than can occur in normal people.

These are clues, that is it, clues to what is going on with any one.

I hate doing taxes and I did not do well in math!!

babycakes

  • Full Member
  • ***
  • Posts: 202
  • diagnosed primary sjogrens with possible overlap
Re: ANA is nucleolar now
« Reply #9 on: March 29, 2010, 02:53:40 PM »
hi inga and all

the ana patterns and antibodies confuse me too.  When i was initially diagnosed i was told my ana was 1280 in homogenous pattern and my rf and ssa were positive.  My panal was done again a year later and my ana was 620 same pattern but i was worried to find out my scl-70 was positive!!!!

I completely freaked out and was sure i was heading for scleroderma (after being told my illness was primary sjogrens) i dont have any additional symptoms (yet) that were not there 2 years ago apart from worsening neuropathy but since being on plaq things have gotten better.

I guess i would like to ask, what does this mean??? My rheumie says that some people have antibodies and DO NOT develop the disease and that there is alot of overlap.  He tells me he has several patients with aptypical antibodies in their blood with no associated disease present but of course i am worried

DragonflyC

  • Hero Member
  • *****
  • Posts: 1186
    • Sjogren's Style
Re: ANA is nucleolar now
« Reply #10 on: March 29, 2010, 06:29:04 PM »
It's definitely true that some people have antibodies and never develop a disease. 

I like what Inga said about "clues."  That's really all doctors have to go on--clues provided by blood tests, clues provided by symptoms, clues provided by family history. . . none of those things provide a definitive answer alone.  Only when a doctor looks at the big picture with all available clues can he/she figure out what's going on, and even then the interpretation of the clues can change with time and additional evidence. 

Inga, I also want to say that I think you did an amazing job of breaking the tests down in your post and explaining them.  I can tell that you are a fabulous nurse; your patients are lucky to have you.
SJS, Hashimoto's, Raynaud's
Plaquenil, Evoxac, Restasis, Levoxyl, fish oil supplements, Vitamin D, NSAIDs, prednisone when flaring
Tested positive for SS-A ( > 8 ) and ANA (>1:640)

Visit me at http://sjogrensstyle.com for ideas about living well despite autoimmune disease.

inga

  • Guest
Re: ANA is nucleolar now
« Reply #11 on: March 29, 2010, 07:35:57 PM »
Oh Dfly...you are my patients....lol.  I have not worked for quite a while...been way too sick.  I would love to work, but, those days are long gone.  I am at home with my dogs and chickens....strange, I know...oh and hubby too...

DragonflyC

  • Hero Member
  • *****
  • Posts: 1186
    • Sjogren's Style
Re: ANA is nucleolar now
« Reply #12 on: March 29, 2010, 07:44:43 PM »
I'm sorry to hear that you've been too ill to work, but we are definitely lucky to have you here!
SJS, Hashimoto's, Raynaud's
Plaquenil, Evoxac, Restasis, Levoxyl, fish oil supplements, Vitamin D, NSAIDs, prednisone when flaring
Tested positive for SS-A ( > 8 ) and ANA (>1:640)

Visit me at http://sjogrensstyle.com for ideas about living well despite autoimmune disease.

Suzy

  • Full Member
  • ***
  • Posts: 237
Re: ANA is nucleolar now
« Reply #13 on: March 29, 2010, 08:21:31 PM »
Inga, thank you so much for posting this. I recently popped up with a nucleolar ANA of 1:320 in addition to my usual speckled 1:1280. I have also been a lot sicker lately. I wonder how it all ties in. All my rheumatologist said was that he doesn't think I have sclero. I keep wondering if it means I've developed another autoimmune disease. What's your take?

I'm hoping to get my most recent bloodwork this week. Hoping for some more clues  ???
I'm a 37-year-old stay-at-home mom to two little boys ages 8yrs and 4yrs.

Sjogren's DX '97, Raynaud's, Superficial Parotidectomy, Cholestasis of Pregnancy, Gilbert's, Vasculitis, Fibro, B12 & D Deficiency, Drug Allergies

Plaquenil, Lyrica, Rituxan, Vit D, B-Complex, Biotin, Calcium, Soothe XP

eyeamdry

  • Hero Member
  • *****
  • Posts: 4867
Re: ANA is nucleolar now
« Reply #14 on: March 29, 2010, 09:11:54 PM »
I have a question that seems related and may bring some answers to other questions.  If I'm "off" on this, just ignore me, or boo me or something.

In the 3 years I have been taking Plaquenil and MTX, my positive signs have gone to the normal side.  I believe this happens alot.  It doesn't mean we are cured, or that we even feel good.  It is a pretty good indicator the meds are working, at least by the numbers.  I'll be going to Cleveland Clinic in less than two weeks and I'm not sure what I'm going for. lol.  I have no energy and have given up on about 80% of life.  I don't mean in a sad way, just no energy way.

I went to the big mall today by myself.  I walked from one end to the other and back.  I didn't walk fast and had a knee brace on my loose artificial knee.  I even sat down on the way back for a minute to open my soda.  Yes, soda.   By the time I got to the car, my feel and lower legs were numb and throbbing.  Once I got the car open and plopped myself down, I was ok.  A couple of hours later, my feet are still working on numbness. 

Sorry, I got off-track, but I think our numbers do and can sometimes come to within normal.  Do others understand it this way too?  Lucy
Lucy
*Dry Eye Queen
**Popsicle Queen