Anti-DNA

[songbird]

My friends,
I made a quick copy of my latest blood test results and am trying to make sense of them. Need some help if you can give it. I thought I knew a lot about lupus, but I'm out of my depth here.

When I was diagnosed with lupus 3 years ago, my rheumy looked very carefully for the antiDNA antibody, and I didn't have it. Now, I do--and in large quantites. (The scale I wrote down said anything over 20 was a positive result. I had 341. :()

What does this mean? I've tried to search the Internet, but everything I can find is written for doctors so I don't understand it. Even what I've found on this website doesn't say much, and I don't understand why the antibody would have appeared when I didn't have it before.

Thanks for any help you can give.

Songbird

[cath]

Hi Songbird,

Nice to hear from you, but I'm sorry about the circumstances.

As I understand it changes in antibody results are fairly common with Lupus. The Anti DNA is one of the few antibodies that does reflect disease activity. Were you fairly new to being symtomatic when you were diagnosed? How about now? How are you feeling?

What did the rheumatologist say about the levels? If you also have increased symptoms, I suspect that increased treatment might be in order. If you are feeling relatively well, maybe they'll just watch you closely. Have they checked your kidney function? Sometimes (but not always), raised anti DNA suggests renal involvement. If you aren't already, it might be worth home testing your urine for protein. Have you had a test done recently?

Let us know how you are getting on,

and heres a cyner hug from me ((((((((((Songbird)))))))))

X C X

[songbird]

Hi Cath,
My rheumy says my kidneys are very healthy. That was one of the first questions I asked, believe me. He also says he does not think my lupus will affect my kidneys. I am guessing that he bases that on the fact that I haven't had any involvement there up to now, just CNS. He does test my urine regularly though (in office testing, not 24 hour tests--though I have done those in the past, mostly during my recent pregnancy).

Right now I have severe anemia, which my rheumy thinks is caused by the lupus flaring. He says my body is not producing enough mature red blood cells to meet my needs, and that it is also producing antibodies to kill the mature ones. :eek: I forgot to ask him what he is going to do about this. I have done some online research of my own, though, so I do know what some of the possible courses of treatment are (spleenectomy, yikes) and that treatment with iron won't work. Iron deficiency isn't the problem.

How do I feel? I feel absolutely flat rotten. I feel as bad or worse than I did when they diagnosed me. (I had symptoms then, but not as severely as I do now--at least not the ones I could feel and see. My blood tests were inconclusive for a long time. We had to wait for the lupus to become active enough to give me a positive ANA to get the clincher for a dx. An MRI of my brain looked like MS,and still does. I might have been misdiagnosed if my rheumy didn't know what he was looking for.) It is very hard to care for my four month old son. To tell the truth, I am very depressed about the dimminishing returns I am getting from some very unpleasant treatments, but I know that isn't my rheumy's fault.

Well, now that you've heard my life story as far as the disease goes.....

Sorry that was so long. It does help me feel a little better to write it down, especially to someone who might well understand what I'm going on about. At one time, I had considered writing a book about living with lupus. I had given it up as it sounded like one long rant I thought no one would want to read, but it may be good for me to write it even if it is never published. And who knows, maybe somebody will want to read it after all. It will, at least, give me something to do in the hospital when I am feeling up to it.

Songbird

[3forme]

Dear Songbird, I am SO sorry things stink so bad. I am sure it is hard to manage with a four month old. Just snuggle him and change him and sleep when he does. Lowered expectations for yourself are really important right now.
At diagnosis, my anti-dsDNA was about 10x yours! Now, while I didn't have the CNS involvement you have, my larger intracranial arteries were so swollen that my right eye was coming out of the socket:wink2: . Oddly enough, in my case, it did hurt, but wasn't damaging from a long term perspective. AND, almost five years later, the silly blood vessels are still swollen, but not shoving the eyes out.
I was on plaquenil for about six months, and the full dose of Methotrexate for about two before I got ALOT of benefit. Heavy-ish doses of pred got the eye back in pretty quick.
My kidneys are holding up like troopers!!!! God bless them!! My liver, too. You may end up fine like me in the kidney dept., but I am pretty vigilant about checking kidney, liver, blood sugar, etc. Lupus is a weird, weird thing.
HUGS, Prayers, and at least a little understanding,
3forme

[Lily]

Hi Songbird :hugbetter:

Like you I had to wait for the positive ANA to confirm diagnosis, although I did fit many criteria and also have CNS problems. MS was suspected at first also, but it turned out to be CNS Vasculitis. They were unsure what was going on but I had lesions on my brain and they were multiplying, especially during the summer months. At first before the Vasculitis became worse they just had me on Plaquneil and NSAIDS, we had to move onto Imuran (a good choice for me at the time because kidneys were starting to be more than their previously mildly affected) It took some time to calm down the activity of both the CNS and kidney but we did achieve a lot with 150mg Imuran once I had been on it for 6 months, I really turned a corner and things became much more settled.

They still rear their head but not for as long or anywhere near as severely. But my doc has taken to testing my dsDNA every 3 months now too, its previously been negative and is still so right now (thank goodness), so it must not be that uncommon for it to develop later on especially in the case of brain and kidney probs.

I hope you and your docs can sort out a more stabilising treatment, you sure need it with a little one to look after. I cant imagine being this ill when my kids were little.........luckily I had mainly, pleuritic and skin stuff in those earlier days before diagnosis and treatment. That was hard enough though so my heart goes out to you.

Talk with your doc, discuss your present state in detail and your concerns, there is much they can do, but it requires a long term plan and one that suits you.

Sending hugs and yes rest as much and often as your baby allows. Its the only way to get through this.

love
Lily

[Pickles]

Hey Songbird,

You can put me down for your first autographed book if you want!!! I would love to read it.

I wish I knew what to tell you.. There is a website called lab tests online. Here is the link. http://www.labtestsonline.org I haven't checked it out for this but I hope you can find something there to make some sense out of the numbers.

:flowery: :flowery: I hope you feel better soon!!!

[songbird]

Are anti-DNA and anti-ds DNA the same antibody? I am confused by some of your responses. The test I had was for anti-DNA, not anti-ds DNA. Actually, when I researched this on the site the little I could find made me glad it wasn'r anti-ds DNA as that seems to indicate kidney involvement when it's high. Can someone clear things up for me please?

Thanks
Songbird

[Lily]

Hi,

Good question and one I pondered earlier on too. As far as I know they are looking at the same thing. All my docs have put SLE as the reason for investigation of it, sometimes they write Anti ds-DNA (usually the GP's etc.) my lupie doc puts DNA. There are two main variations they look at thats the Anti-dsDNA and the Anti-ssDNA. The double-stranded (DS) is the one more associated with SLE, sometimes they find someone with single-stranded (SS) DNA and I'm not sure what the significance of that is. We've had a few here undiagnosed who had that antibody.

Most of my sources show that a high level of dsDNA is quite often associated with Nephritis, but as mentioned before its not always the case that someone with the antibody has kidney disease. As far as your number goes then I know that somebody here who had failing kidneys had a figure around that when her kidneys were fairly stable with meds, she was much improved, but again its an individual thing and her disease was caught late and her numbers to begin with were a fair bit higher than that. I dont think the DNA antibodies ever go away??????? again I'm not sure, I'm no doc, but a rise in them can predict disease activity.

love
Lily