[greenhaggis]

First of all I will say I was not sure where to post this question!

I am positive for anti ds-dna with a diagnoses of SLE, but have no known major organ involvement.

What am I interested in finding out is how many with anti ds-dna bloods have gone on to have more problems or are there still many out there that have stayed with skin,pain involement only?

Not sure if I have explained my question correctly.

This is one thing that dwells in my mind and I'm sure that there are lots of helpful people that may share their own experience with me on this question.

Thank you!

Lesley

 

[Salopsally]

Hi Lesley,
I have SLE and Fibromyalgia and have the anti ds dna positive.
Ive only been diagnosed for about a year but Ive obviously had this for a good few years now and not RA which they first thought. Probably 15 years or more.
I had a major flare when I got divorced about 12 years ago but then after about 3 years I came out of the flare and was totally medication free. I had the odd symptom then but nothing that I needed medication for. This lasted for 7 years then after a 12 hour sickness bug it all came back. It must have triggered my immune system to overreact again or something like that. Ive been struggling for 2 years but am now medication free again and I presume in remission as everyday my symptoms get less or better.
Ive never had any organ involvement but have been very disabled during the flare. Now Im feeling near normal again. Im sure there is hope in lots of cases to live with this fairly well.
I dont think in most cases it is classed as a progressive disease but Im no expert. Obviously some people are seriously ill from the outset and it never gets better.
Hope you get much better like I have. Im always prepared for it to come back and try not to push myself to the limit these days like I used to. I suppose Im probably not as fit as someone who doesnt have SLE but Im living a fairly normal life.
My best wishes for you.
Luv Sal x

 

[Surferboy]

I've posted this question else where, but is anti ds-dna the same as anti dna?

 

[Maia]

Probably they are the same, since both have been used in the context of a lupus diagnosis. Some doctors will just abbreviate when discussing results & I'm guessing that is what happened with you. Most accurately, it would be referred to as anti-ds-DNA (as there is also an anti-SS-DNA which refers to Single Strand DNA & this test is no longer used for lupus diagnosis due to relative inaccuracy).

 

[Surferboy]

Thanks Maia.

Can anti-ds-DNA levels be reduced... or even bought to a negative? I tried to Google this but had no luck.

 

[cath]

Hi, yes the ant DNA titre can be reduced, even to negative. Unlike the ANA which does not correlate with disease activity, the anti DNA is thought to be a good marker of disease activity, so falling levels are a good thing, rising levels are worrying. Still, not everyone with a high level is equally sick, some do well even when the titre is high and vice-versa.

X C X

 

[Surferboy]

Hi, yes the ant DNA titre can be reduced, even to negative. Unlike the ANA which does not correlate with disease activity, the anti DNA is thought to be a good marker of disease activity, so falling levels are a good thing, rising levels are worrying. Still, not everyone with a high level is equally sick, some do well even when the titre is high and vice-versa.

X C X

... and this is where Plaquenil can help?

My anti DNA was 48. Is this considered to be high?

Lesley, what was your reading?

 

[bluedolphin]

Hi,
I have just been diagnosed a month ago and I had a positive anti-ds-dna test. I dont know what my numbers where but he said that they were bad. I have been taking plaquenil, prednisone, mobic, flexeril, and pain meds and haven't really seen much of a change yet.

I know that I am not offering much to your question but would love to read the answers that you get from others as I am in the same boat. I don't really understand what it means for that test to be positive and why some people have it and others don't. I guess thats why they say that this disease is so crazy!

Hugs,
Tracy

 

[greenhaggis]

... Lesley, what was your reading?

Have not got a clue what level was in December 2007 when I was diagnosed.

The only reason I know is that the letter confirming my diagnoses stated that on the basis on high level SLE was a firm diagnoses. Before that he said I had SLE but for sake of insurance did not feel he had to definately diagnose in writing it into my notes, but he could treat anyway if I so wished.

If I find out my readings I will let you know! I had bloods taken 2 weeks ago one of which for the anti ds-dna. I know my results will be in but I'm having a holiday from results etc. - got enough meds to last through the kids summer hols! After then I will investigate more.

 

[Lily]

Hi there,

Just to throw a spanner in the works, I am negative on Anti-DsDNA yet have severe brain involvement and moderate kidney involvement.

Surferboy, from the ones here with DNA antibodies 48 seems a low reading, a lot of the very sick ones (i.e. with lupus nephritis) had readings of around 300 etc. Those levels went down a lot with treatment.

love
Lily

 

[Raglet]

Whether or not 48 is high or low depends totally on what sort of test is used. There are a variety of ways of measuring anti-ds-dna, which give wildly different numbers. So unless you know you are comparing apples with apples (ie the same test was used) then comparisons are pretty meaningless.

On the test I am currently tested on, 48 is definitely quite high - but on other tests I have been tested on I have had results like 580. Go figure.

cheers

Raglet

 

[BigSis]

Hi Lesley.
This is our common worry.....will it get worse.

I have had very high antidsDNA. So far and touching wood no organ involvement.

I do wonder if the intense anxiety I suffered last year was a bit of CNS stuff though

Surferboy
I replied to another post but just to add......my dsDNA is currently 23................:woohoo:...result

 

[Surferboy]

Thanks for the replies all.

I gave a blood test yesterday. And due to the fact that I have quite a bad flare right now I have a nasty and worry that my Anti DNA result next time round is gonna be through the roof

When I first went to get the dreaded blood test I was pretty much in remission!

 

[greenhaggis]

Thanks everyone for your replies!

I try to find the interesting rather than scarey side of Lupus to focus on - knowledge is a powerful tool!

I have no kidney involvement and hopefull it will stay that way. CNS stuff as I have symptoms but no bloods to prove it!

But then again, I'm photosensitve and my bloods are negative for this also! Thats why I've recently had a strange test done for Porphyria!

Test and symptoms do not corrolate in my case! The only positive test is anti ds-dna (no organ involvement) and only ever mildly positive for ANA, ESR and CRP are always non-text book as well. Then I have symptoms for many things like Sjogerns, photosensitivity and neuro problems and the tests are negative.

Living a lupus life is very strange!

At least it keeps my Immunologist busy with his research and helps back up other people in the process of diagnoses that symptoms can be more important than bloods!

Thanks again!

Lesley

 

[greenhaggis]

I have test done for urine and bloods also to check for organ problems too!

I have so bloods taken in the last 6 months!

I counted that since Sept 2007 I have had 45 GP and specialist visits and that does not include all the phone calls!

I do sometimes get protein in urine, but really can be quite normal! The 24 hour urine test sometimes proves that there is really not much to worry about! Urine can be more concentrated at certain times of day, hence 24 hour test for a more reliable test.

Lesley

Lesley

 

[Clare.T]

Hello Surferboy
I am moving your last post on this thread to Symptoms section with the title Tests and Signs of organ involvement.

Link

http://www.thelupussite.com/forum/showthread.php?t=71084




Clare

 

[Lily]

Hi Lesley,

CNS stuff as I have but no bloods to prove it!

The major CNS stuff will show up on diagnostic testing often not in bloods . So therefore Neuro tests, EEG, MRI/MRA, lumbar punctures etc.

love
Lily

 

[greenhaggis]

(((Thanks Lily)))

Not moved onto those tests yet, although its probably the next target after the kids Summer Holidays are over - I do always get needle tests done on feet/toes, hands/fingers!

Still also awaiting results from Gastroscopy biopsies, Porphyria which have been done recently too!

At present my low B12 (only borderline low) is being blamed as a possibility for some things!

Three weeks ago we were concentrating on the issues of calf pains, rib pains and bone density - so, ECG, chest X-ray, and bone density scan also a referal to the specialist that does test for vein blockages and blood flow!

Lesley

 

[Lily]

Good luck with all that testing ((((((((Lesley)))))))), do we ever get a spare moment to just 'be'

I was forgetting complement levels associated with my brain stuff, they are usually low, but then I don't know if they always are when it's about because we don't worry about testing it anymore. It's usually very obvious what is going on so why bother

love
Lily

 

[Lily]

Good luck with all that testing ((((((((Lesley)))))))), do we ever get a spare moment to just 'be'

Low B12 can cause peripheral neuropathy so wouldn't it be good if it was that and could be easily remedied.

I was forgetting complement levels associated with my brain stuff, they are usually low, but then I don't know if they always are when it's about because we don't worry about testing it anymore. It's usually very obvious what is going on so why bother

love
Lily