Bloods

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

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