Another ANA Question

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curlyhair
Veteran Member


Date Joined Jan 2005
Total Posts : 659
   Posted 10/18/2007 9:37 PM (GMT -7)   
Hi,
I realize that ANA's do not coincide or predict disease activity. However, once the levels get really high I wonder how your body can produce that many antibodies and not have them cause some type of damage. In the past 3 years my rheumy has checked my ANA 3 times and each time it gets higher. As of last week it is now 1:1280. I already have stage 3 kidney disease from my lupus and although it is stable, I worry that this will change with my increasingly high ANA levels. Any thoughts or ideas on this subject is appreciated.
Thanks,                             Sandy
DX: Kidney Disease, (? Lupus Nephritis) 2002
DX: Raynaud's Phenomenon and Lupus (SLE & Class V Lupus Nephritis) 2005
DX: Anorexia and Hypokalemia 2006
 
meds: plaquenil, amiloride, klor-con


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 10/19/2007 5:42 AM (GMT -7)   
Hi Sandy! I hope you get some answers to your question. I just don't have a clue. But, I wanted to say hello!! Haven't seen you in a while and hoping you have been doing ok. How are you girl???

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


curlyhair
Veteran Member


Date Joined Jan 2005
Total Posts : 659
   Posted 10/19/2007 1:35 PM (GMT -7)   

Hi Rosie,

I am doing OK and am glad to see you back. I hope you have good luck with your new rheumy, I just lost my nephrologist that I absolutely loved so I understand how hard it is to replace a much loved doctor. Have a good day and thanks for replying even though you couldn't answer my question. I don't think there is an answer. Hugs,

Sandy


DX: Kidney Disease, (? Lupus Nephritis) 2002
DX: Raynaud's Phenomenon and Lupus (SLE & Class V Lupus Nephritis) 2005
DX: Anorexia and Hypokalemia 2006
 
meds: plaquenil, amiloride, klor-con


AlwaysRosie
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Date Joined Jan 2005
Total Posts : 8616
   Posted 10/19/2007 1:42 PM (GMT -7)   
*sigh* I was hoping someone else might have some ideas. I actually totally stopped looking at my blood work when I saw that the rheumy was really on the ball *sigh* I really liked not knowing because I was obsessing over every test that was off. You have the kidney issues so you have SO much more at steak than I do. I've read where the ANA titer does not indicate degree of disease . . . but I think, seeing so many post theirs here that it IS often an indicator. Its just that there are some really sick people here who's labs just don't correspond with their illness. confused

Thanks for your encouragement . . . always appreciated!!

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 10/19/2007 3:27 PM (GMT -7)   
Hi Sandy,
 
You have good questions about this.  I think our ANA is very misunderstood.  I'm not a pro at this thing either. I wish we understood more about what it means to us....
 
From what I understand, our ANA is an indicator that we have the antibodies in our system.  The higher the number, the more we have.  It doesn't necessarily mean that with a very high number, like yours, that it means your lupus is more active.  It just tells us that there are a lot of those antibodies floating around.  The bigger indicator of our disease activity is the amount of inflammation that is attacking our organs, tissues etc.  Someone with a lower ANA, like me (1:640) when I was diagnosed, had incredible amounts of inflammation going on.  It was insane.  My antibodies were fewer in number, but much more active in producing inflammation.
 
Does that make sense?  I hope so!  I'm reading this over again and wondering..... LOL.  That is what I understand it to be.  I hope there are others out there who can shed some more light too!
 
Blessings,
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

33 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, neutropenia, thrombocytopenia. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, monopril, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 10/19/2007 4:07 PM (GMT -7)   
Hi Sandy:

I'm like Ginny, my ANA is barely positive, but my ESR is very high and my inflammation markers are way way high. I think that she explained it the best our ANA show that we've got the antibodies in our blood. How is your ESR or CRP? Maybe you could get your rheumy to explain it better as to what it means when the numbers are really high. I guess I'm probably not offering much help here. Just wanted you to know that I hope things improve for you and that you're feeling alright.

Take care,
Barbara
dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, RA,MDS (Blood Cancer). Tons of meds.


Gidget^
Regular Member


Date Joined Aug 2007
Total Posts : 171
   Posted 10/19/2007 7:22 PM (GMT -7)   
Sandy,
Both my ANA and Anti dsDNA are over 2,200 and even though my doctor said this does not indicate if the Lupus is active or not, he's very concerned about kidney involvement. Everything else in my blood tests were normal, so why would he be so concerned about my kidneys? And if the ANA and dsDNA don't have anything to do with activity, why do the numbers fluctuate, and why even bother doing the tests? Nothing about lupus tests seems to make any sense LOL

Are there any other tests that your numbers are off?
Gidget^
 
SLE 9/07, FMS '90's, Spinal Stenosis, Osteoarthritis, Sinus Tach, PVC's, Kidney Stones, RLS, Parotid Neurofibroma 8/04, Cervical Cancer 9/06
Plaquenil, Clinoril, Toprol XL, Prozac, Zyrtec-D, Zocor, Vitamins B6 & B12, Folic Acid, Toradol, Percoset, Loratab
 
There is no psychiatrist in the world like a puppy licking your face.
 
 


curlyhair
Veteran Member


Date Joined Jan 2005
Total Posts : 659
   Posted 10/19/2007 10:50 PM (GMT -7)   

Hi All,

Thanks to everyone for their replies. I don't post often because I am busy with work and running 2 teenagers around, but I do read the messages frequently.

Barbara Lee, I know you have been having a really rough time and my heart goes out to you. You are a very inspiring, courgeous woman and my love and thoughts are with you often.

Ginny, I hope you are feeling better. I know things have been a little scary for you too recently.

Rosie, I love your posts. You make the day brighter.

Gidget, people with Anti dsDNA usually have kidney involvement. My kidney function tests (GFR and BUN) are not normal but most everything else is. I test negative for the Anti dsDNA even though I do have lupus nephritis. Perhaps you will never develop kidney problems, but it is good your doc is checking for it frequently.

Have a good evening everyone and a restful sleep.               Sandy


DX: Kidney Disease, (? Lupus Nephritis) 2002
DX: Raynaud's Phenomenon and Lupus (SLE & Class V Lupus Nephritis) 2005
DX: Anorexia and Hypokalemia 2006
 
meds: plaquenil, amiloride, klor-con


mom7
Regular Member


Date Joined Oct 2007
Total Posts : 33
   Posted 10/23/2007 3:41 PM (GMT -7)   

I know it might be too late to reply, my daughter had a lower ANA than I.  She was gravely sick.  So the high ANA theory, I am not sure it stands to how sick you are, or going to be.

Sharon


Staceymommy
Regular Member


Date Joined Oct 2007
Total Posts : 24
   Posted 10/23/2007 4:21 PM (GMT -7)   
I am pretty sure with how sick I've been that it might not have anything to do with it either because mine has always been right on the border of pos. and neg. Even a few years ago when I was still able to work and could go for weeks without pain meds. But I did notice that my sed rates fluctuate the sicker I am the higher it is and The better I feel the more it comes back down. I don't know if it's just a coincidence or not though.
dx Aug 2001 SLE and Hughes, 2003 Chrondromalaysia patella, Hashimoto and IBS, 1995 Gerd and Osteo Arthritis, 2004 Migraines, Chronic Bronchitis, Sinus Tachycardia, 2006 Fibromyalgia

Married 9 1/2 years
Mom to 1 miracle boy born 11/10/02 (took 12 pregnancies)
Meds
Darvocet
Toradol
Prevacid
Toprol
Vistaril
Prednisone(during flares)
Albuterol Nebulizer

Supplements
One a day
Ho shou wu(helps with the infamation and break through pain)
peppermint and green teas
Primrose oil
chaste berry


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 10/25/2007 2:25 AM (GMT -7)   
My ANA never changes it's always 1:2560. Sometimes I feel good and sometimes I feel like crap! but I hope you don't have more problems with your kidneys no matter what your ANA is.
hugs
carol
God Bless
Carol
Primary Biliary Cirrosis,  COPD, Cervical Cancer survivor. Osteoporosis
Prednisone 5mg, Plaquanil 800mg,Evista60mg, Effexor 150mg, HCTZ25/Triamterene37.5mg,Xanax x3
 
Only two defining forces have ever offered to die for you: 1. Jesus Christ 2. The American G. I
 
 
 


aggscott
Regular Member


Date Joined Oct 2007
Total Posts : 35
   Posted 10/25/2007 4:16 AM (GMT -7)   

When I went to the doctor the last time I was in a flare, I was pretty sick. My ANA for the first time was lower than 80! Every other time I had it done it was high, really high. This time nothing. Now that is strange to me but, after I thought about it I thought maybe the Placqunil(SP) was working? I don't know for sure but it was something that went through my mind. I have been on it now for a year so maybe it is working..

 

Aggie


curlyhair
Veteran Member


Date Joined Jan 2005
Total Posts : 659
   Posted 10/27/2007 10:34 PM (GMT -7)   

Thanks to everyone for their replies. Okie....thanks for the well wishes. Like you sometimes I feel crappy and other times feel good. My ANA really has nothing to do with it, I was just curious as to why it kept rising, especially in the past two years. Anyway, I appreciate everyone's input.

Sandy


DX: Kidney Disease, (? Lupus Nephritis) 2002
DX: Raynaud's Phenomenon and Lupus (SLE & Class V Lupus Nephritis) 2005
DX: Anorexia and Hypokalemia 2006
 
meds: plaquenil, amiloride, klor-con

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