[Cammie]

Hi all:

I'm new here...sorry to be joining you. I have not been diagnosed with lupus, but over the past few months SOMETHING has gone haywire. I have had sinus infection, a skin infection, bilateral pain in my elbows (I can't sleep with them bent or I wake up in extreme pain), a salivary gland infection, and 3 cases of what I thought were conjunctivitis. The last time I went to the eye doc for conjunctivitis he sent me to a specialist who said my eyes were extremely dry. I brought this up with a close friend, who is also an eye doc, and told her that it was odd that I had been told I had very dry eyes as the doctor who diagnosed my salivary gland infection said I had an extremely dry mouth. So my friend the eye doc told me to get a test for Sjogren's.

In the meantime, I developed a low fever and night sweats, but at the moment I have no other symptoms.

In any event, I got the blood test, turned out negative for SSA and SSB, as well as ANA, but "weakly positive" (45.3) for anti-ds DNA antibody.

I guess my question is whether it is possible to be negative for ANA but positive for anti-ds DNA and have lupus? I thought they went hand-in-hand...

 

[mysharonna]

Hi Cammie,

Welcome to the forums. Sorry you are not feeling well right now, hopefully you will be able to find some answers soon. There is a blood test specific for sjogrens called the Sjogrens SSA (SS-A-AB). I think some people have also had samples taken from their lips for diagnosis. Maybe you can ask your doctor if either of these tests are an option for you.

I am so glad you asked this question about DNA because I was just about to post a similar one!

I was diagnosed about six years ago based on a positive anti DNA amongst other signs, tests and symptoms. My ANA has always remained negative.

I saw a new doctor yesterday who stated it is highly unlikely or rather unusual to have a positive anti DNA with a negative ANA...they go hand in hand.

I was always under the impression that anti DNA was more of a disease activity marker..and ANA was not always specific to lupus since people with RA can also have a high ANA titre.

Hope some of this helps!
Sharon

 

[Cammie]

Thanks, Sharon, that was helpful.

So at this point, with the negative ANA but positive anti-DNA, does your doctor think you have lupus or not?

 

[Lily]

Hi Cammie,

It sounds like you were tested for the correct antibodies for Sjogrens. The Ro SSA and La SSB which might have been part of a group of antibodies tested for both Lupus and Sjogrens. That 'group' of tests is called the Extractable Nuclear Antigens (ENA). Not having the SSA or SSB doesnt necessarily mean you don't have Sjogrens though. I think I read somewhere that around only 70% of patients tested have those antibodies but they still have Sjogrens. As Sharon mentioned they can often do a lip biopsy (inside your cheek) and that can be positive.

Have you seen a Rheumatologist well versed in these diseases, they might be able to assess your case much better, it does sound like you have something going on.

ANA is useful for diagnosis, and whilst nearly all lupies test positive at some time, unless there is repeated testing done then it might be missed. It is not a good indicator of disease activity in those already diagnosed and it can be positive for other reasons also.

At a lowish level Anti-DsDNA can indicate SLE or another autoimmune disease. The levels found in active SLE can go very high, but having that antibody is still quite specific. That's where a good Rheumatologist could probably help you out.

love
Lily

 

[halfpintfl]

Hi Cammie, welcome to this site. There is no one blood test that can say "yes" you do have lupus , or, "no" you don't have lupus. Lupus is called the disease of 1,000 faces for a good reason=that's about how many things that behaive like lupus. Lupus is DX by symptoms, your dr.'s
observations, and the blood , but all three are taken into
consideration b/4 giving a DX. I hope that you are in the hands of a good Rheumatologist. Keep in touch and be well.:wink2: ​

 

[mysharonna]

Hi Cammie,

In answer to your question, this is the first doctor who actually told me I have SLE. In the past, it was referred to as cutaneous with a few overlaps of other illnesses. So I guess it is possible to be diagnosed with it without ANA antibodies present.

Hope you are feeling better,
sharon

 

[Cammie]

Hi Cammie,

In answer to your question, this is the first doctor who actually told me I have SLE. In the past, it was referred to as cutaneous with a few overlaps of other illnesses. So I guess it is possible to be diagnosed with it without ANA antibodies present.

Hope you are feeling better,
sharon

Thanks, Sharon. I'm starting to realize that getting to the bottom of whatever is going on with me could be a very long trek...

 

[Clare.T]

When I was first diagnosed with skin lupus over 30 years ago I apparently didn't have any auto bodies. Of course I didn't know anything about antibodies until I got online some 10 years ago but looking back over previous blood tests I realised that I had had low level ANA and very high anti Ro for some years.
In fact I had a sort of skin lupus that is characterised by these antibodies but since the skin was always the main and only organ affected I never thought of myself as having " SLE". The only other symptoms were arthralgia and fatigue.

When I was asked to participate in an HRT trial I said but I dont have SLE. The reply was that I had enough criteria to be classed as having SLE whatever the actual symptoms are so I was eligible for the study.
True enough, that's exactly what the ACR Criteria list was drawn up for, not for diagnosing but for classification.

It didn't make a jot of difference to me what it was called at any given time.
I was amused and interested that when I moved to St Thomas' that the doctor wrote " Ro- positive SLE / subacute cutaneous " I don't know what happened to the ANA antibodies in the UK - they were still there in the USA!

It just goes to show what hair splitting can go on, what a very broad term SLE is, and how it all depends on how doctors chose to define or classify the symptoms presented in any individual case.

The disease is the symptoms you are suffering from. That is, once it has been determined that you do have an autoimmune connective tissue disease. Treatment options are much the same for them all, speaking generally.

Cheers
Clare