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Discussion Starter · #1 ·
Hi
Can somone shed some light on this please. DX 2 years ago with first of all Sub Acute Cutaneous Lupus, now DX with SLE. Asked rhumy Nurse today about my bloods and she said:-
ANA - Negative
Anti ds DNA - Positive
Anti Ro - Positive
Punch Biopsy - Positive Lupus
Can't get my head round ANA negative, I would have thought this would have been positive. Nurse is going to speak to Rheumy as she wasn't sure herself.
Perhaps I am living in denial that if the ANA is negative, then it isn't Lupus even though I have other symptoms as well as the bloods. (wishful thinking I suppose)

Thanks for any help you can give me. I have read the Sticky, but still do not undestand ANA.

Thank you

Love
Meryl
 

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Hi Meryl

I have read that the ANA can fluctuate and sometimes someone being positive for years can be negative and also there are some that are negative and still have Lupus. The way I think they look at ANA is as a guiding tool. If it is positive and you have symtpoms then there is more weight towards lupus. If you have other positive bloods and symptoms, I don't think they would be too concerned that the ANA is negative . Sometimes with treatment ANA can go back to negative.

Let us know what your doctor's explanatino is.
 

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Discussion Starter · #3 ·
Hi Paula
Thanks for that, it does explain it more for me. I will let you know what the Rheumy tells me.
Thanks once again
Take care
Love
Meryl
 

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Hi:

I am completely serum negative...Oh OK I had one positive ANA....but all other usual tests are negative. I do have occaionally low C3 & C4. Only thing I test positive for via blood is APS.

I was DX with SCLE via a skin punch, and DX with SLE via skin and symptoms.

Welcome aboard. It doesn't really matter what they call it as long as they treat your symptoms with medicine and you with respect!

Stephanie
 

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Hello Meryl

It is unusual not to have a positive ANA but I think it can be disguised when ds DNA is positive. I read something about that ages ago but I can't remember exactly how it went. By the way the level of the ds DNA is more significant than its presence but anti -Ro is either positive or negative. Half of those who do not have ANA antibodies do have the Ro antibodies and it's known as Ro positive lupus. According to my doctors at St Thomas' that's what I have.
On the other side of the Atlantic I do have ANA antibodies :) Don't ask !
The anti Ro antibodies are especially associated with subacute type lupus skin.

The main thing to know is, in what other ways is lupus affecting you in addition to the skin. That will determine what treatment you need. Subacute rarely accompanies severe organ involvement but there is often a host of other systemic problems as in SLE even if there are no antibodies present at all.
Technically I have an SLE diagnosis because I have two antibodies plus the skin and arthralgia and photosensitivity but the skin has always been the main organ affected, in contrast to Stephanie.

All the best

Clare
 

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Discussion Starter · #6 ·
Hi All
Thank you all for your replies. I am beginning to understand a little more about this now.

Clare, the main organ affected is my skin, although I do have RA, Raynauds, Vasculitis, IBS and Osteoporosis. The medication I am on now is Prednisolone, 5mg day, Plaquenil 400mg day, Methotrexate 15mg week injected, Alendronic Acid and a couple of other meds thrown in for good measure.
I do appreciate you all taking the time to help me and wish you all well

Love

Meryl
 

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Hello again Meryl

Since you are already being treated it is possible that the ANA isn't present now. Dr Wallace says that those who do not have a positive ANA and who don't fall into the Ro positive SLE category, have been medicated. ANA is not generally regarded as a reliable disease activity indicator but it can reflect lessening disease activity. I have the impression from my USA lupus doctor that anti -Ro often doesn't indicate disease activity. When I was in medicated remission my ANA went negative but anti Ro stayed high positive. He seemed to think this was typical.
If your skin is still a problem ask about adding Mepacrine, another slightly different anti malarial that can work wonderfully well with Plaquenil. Many cases of SCLE don't respond all that well to Plaquenil alone. You might be able to reduce your Pred and even the methotrexate because it adds anti malarial power to relieve the systemic symptoms too. Many doctors don't know or don't prescribe it which is a great pity although the combo is in regular use at St Thomas and is very well documented historically for SLE as well as skin lupus.

It is hard to realise that these autoimmune connective tissue disease are very unlike infectious common diseases such as measles or mumps which are easily definable. The AI CTDs are a real mish mash of symptoms and the names given to them were made up by doctors for classification purposes only. Many people don't fit neatly into the boxes and there are atypical cases and very wide varieties of presentation as well as overlaps.

That's why they can be so hard to diagnose and why it seems we each have our very own special presentations.

All the best
Clare
 
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