[PJW]

Hi

My GP told me she thought I had Lupus based on my symptoms and ANA result. My specialist is in the process of testing me for anti double-stranded DNA, ENA screen and complement levels. Do these have to be positive for Lupus to be diagnosed as my specialist has insinuated that she won't see me again if my results are negative.

Any advice will be gratefully received.

 

[PJW]

Can I also ask: Is my ANA blood test likely to fluctuate depending whether I am currently experiencing any symptoms, and are the anti double-standed DNA, ENA and complement levels likely to change as well?

 

[Katharine]

Hello PJW,

No they don't have to be positive. Anti-dsdna is specific to lupus but not all lupus sufferers have it. Some only have positive ANA, some only have positive anti-dsdna or another one of the ENA tests (others can also be present in lupus). Usually the reason for the more specific tests is to be able to pinpoint exactly which auto-immune disease it is as some overlap so much in symptoms that it isn't always easy to say (ANA can be present in several AI diseases).

I find it odd that your specialist insinuated she wouldn't see you again if it were negative unless your ANA was very low and your symptoms not significant enough.

Katharine

 

[Katharine]

Lupus disease activity is not generally seen in tests such as ANA which are used for diagnostic purposes. Many rheumies don't even test for them after diagnosis. ANA may also disappear when on treatment.

There are other markers that "can" indicate stronger disease activity (generally inflammatory markers) but they don't always or they don't show at the time that someone feels ill. People often say that they're in a flare and yet their bloods don't show anything up and good rheumies recognise that and listen to their patients.

 

[Katharine]

P.S. I just re-read your other post and your ANA is very low at 1:80 which is why your specialist is not taking it very seriously. Many "healthy" people may have an ANA at that level for several reasons.

Of course that doesn't "exclude" lupus and some people are even ANA negative (2-5% of patients).

 

[PJW]

Hi Katharine

Thanks for the replies. You gave me some advice earlier when I asked if my symptoms sounded like Lupus and you you advised me some were very typical and that my GP was quite right to refer me to a specialist.

My ANA was 1:80 which I know you said wasn't usually considered significant, but to try and get re-referred which is what I am definitely going to do now. My specialist really didn't seem to have the time or patience to look into my history or anything other than saying I didn't have rheumatoid arthritis or fibromyalgia. My entire appointment including the examination was completed in under ten minutes, and the letter I have now received which was sent to my GP shows that the specialist wasn't listening as she has got several facts wrong, and ends it by saying when she has the results of my tests she will review me again if necessary.

Hopefully another referral will help. I just wondered about my ANA changing as when I was tested I wasn't having a flare up, and thought it might be worth asking for another test when I was.

Thanks for you advice again. This site is so useful, and everyone is so helpful and nice.