Hi! My wife Nanc has suffered with Lupus for almost 10 years. Recently
we began seeing a new Rheumatologist and the doctor ordered all new
blood tests -- she wanted to begin from a clean slate and learn about
Nanc's health.
Well, it seems that Nanc now has a negative SED rate and ANA tilter.
She's never tested negative to these tests before (since the Lupus
diagnosis in '95 or so).
My question is, has anyone on the list, who is diagnosed with Lupus,
ever received a negative SED and/or ANA? The Rheumy, for now, tends to
think Nanc doesn't have Lupus. Her early leanings towards no Lupus may
be she doesn't have enough data and doesn't know Nanc well -- but, I'm
pretty excited. I would love for it to be true.
Does a negative on SED and/or ANA mean Nanc does not have Lupus?
Regards,
//pete
Andy - 07 May 2004 20:43 GMT
[
>Does a negative on SED and/or ANA mean Nanc does not have Lupus?
Sorry, but to the best of my knowledge no it doesn't.
http://www.northeastlupus.org.uk/katfaq/diag.htm#NegANA says:
Can a Lupus Patient have a negative ANA titre?
From 1-5% of lupus patients may have a negative ANA test despite
numerous qualifying criteria. Still, in this instance, patients often
test positive for anti-Ro (SSA), a type of ANA. Some will also have a
positive anti-dsDNA. This is why when the patient is ANA-negative but
complaining of lupus-type symptoms it is worthwhile to ask for these two
tests.
A similar problem is that of Undifferentiated Connective Tissue Disease
(UCTD). This is a case in which many SLE symptoms are present, even a
low-positive ANA, but for which the doctor cannot fit the patient to at
least 4 of the ACR's SLE Diagnostic Criteria.
Both ANA Neg. SLE (also called sero-negative SLE) and UCTD are very
frustrating for the patient as they often feel they are not receiving
the same level of care or concern from their doctors that a patient with
full-blown SLE would receive.
Finally, there are times when consistent treatment with standard Lupus
medications and taking care of oneself can lead to remissions during
which ANA titres are much lower or even negative. Doctors (uninformed
ones) have been known to mistakenly undiagnose the patient that has been
diagnosed for years, sometimes going so far as to remove lupus therapy
and putting the patient at great risk.

Signature
Andy Taylor [Chair, N E Lupus Group]
See http://www.northeastlupus.org.uk for more!
KCat - 07 May 2004 21:04 GMT
Pete,
Unfortunately, a diagnosis (or un-diagnosis) can't be based on this
information alone.
But... Dr. Wallace (known Lupus expert) says that nearly 20% of all lupus
cases spontaneously remit. And she may be in remission that could last for
a long time if not for the rest of her life. It isn't an impossibility.
Do you know previous values for these? Has she been on medication to
control the lupus? If her disease was relatively mild to begin with and
with moderate or low values on these two tests, then it's possible she does
not have "full blown" lupus but a similar but much less severe autoimmune
condition that can remit to this level of health.
I guess what I'm saying is - How does she feel? There are cases of SLE with
negative ANA titres - called "sero-negative" lupus. Sed rate is not
diagnostic for autoimmune disease and only indicates the level of immune
response to an illness (any number of illnesses) and even then it isn't
terribly reliable. My ESR (Sed rate) has never been terribly high even when
I was very ill and in a great deal of pain.
I'd like to give more encouraging words. My take would be if she feels good
and is not dependent on lupus meds to do so, than she should enjoy the time
and not worry about a diagnosis. BUT - not do things that might take her
out of remission and back into a flare if she indeed does have SLE. Does
that make sense?
The lupus community has often been frustrated by inaccurate diagnosis based
on misunderstanding of the importance of these blood tests and symptoms.
Yet it seems like it is almost a fad disease right now and being diagnosed
by Internists as soon as they see a positive ANA. That is unfortunate for
the patient who will be stressed and upset by a diagnosis that might have no
validity at all. I am in contact with someone right now going through just
that. It is also unfortunate for the medical community - their credibility
is being damaged.