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What is Lupus?
Dr. Peter Hendler
Dr. Desai: Hello and welcome to the KP Healthcast. In our studio today we have Dr.
Peter Hendler, board certified in rheumatology and practicing at the Fremont Medical
Center. Welcome Dr. Hendler.
Dr. Hendler: Thank you Kavin.
Dr. Desai: How long have you been practicing at KP?
Dr. Hendler: I’ve been at Kaiser since 1990.
Dr. Desai: And how long have you been practicing rheumatology?
Dr. Hendler: I started practicing in San Francisco in 1982 and then came over to Kaiser
in 1990.
Dr. Desai: Today our topic is going to be the discussion of the disease lupus. Dr.
Hendler, what exactly is lupus?
Dr. Hendler: I’ll have to explain that by giving a contrast to a common other disease.
Let’s take for example pneumococcal pneumonia. A person either really has the germs,
the pneumococcus in their lungs and they really do have an infection or they really don’t.
It’s black and white, they either have the disease or they don’t. None of the diseases that
I deal with; rheumatologic, auto-immune, connective tissue diseases are like that.
They’re a lot more like colors. In other words, we have a color called red, we have a
color called blue. But we have every possible mixture in between and there are certain
colors were you would be hard pressed to decide whether to call it red or blue. All of the
autoimmune diseases are connected with all of the other autoimmune diseases and for
example we are talking about lupus today, but there’s another very common disease
called Sjögren’s. Sometimes a person has Sjögren’s, sometimes they have lupus and
sometimes they have exactly something in between.
Dr. Desai: And so then how do you make the diagnosis?
Dr. Hendler: That’s a good question because we have to make the diagnosis for 2
different purposes. Now for the purpose of something like a national drug study or a new
kind of therapy, you’re going to want to have the definition absolutely exact so that no
one will come back and say I’m not sure that this patient in your study really had lupus.
So a committee of experts makes an official criteria and if you have 4 or more of the
official criteria, then you will officially have lupus which is certified good enough to be
an entry into a study. However, in my practice it doesn’t work that way. If someone
doesn’t meet the official criteria, but they have an autoimmune condition and it’s a lot
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more like lupus than anything else, I will consider that a clinical diagnosis of lupus and I
will treat them accordingly.
Dr. Desai: Okay. Is there an age or sex predilection? I mean who exactly gets lupus?
Dr. Hendler: Um, there is an age and sex predilection. Um, it’s generally most common
in women of childbearing age, but children get it, men get it and elderly; everyone can
get it.
Dr. Desai: Do we have any idea what causes lupus?
Dr. Hendler: We do. Um, your immune system has a very difficult job. Um, imagine
all the different things that make up your body. You have proteins and many different
kinds of proteins, you have carbohydrates. Now what are germs and cancer made out of?
They’re made out of proteins and carbohydrates too. So your immune system has to take
an incredible inventory of everything in the world and it has to know this is me, don’t
attack it, this is not me and shouldn’t be here, attack it. So the immune system can make
one of two kinds of mistakes. It can either not be aggressive enough and let an actual
enemy, meaning a cancer cell or a virus cell or a bacteria, take over and cause a bed
infection and cause problems. Or it can make a mistake in exactly the opposite direction.
In other words, it’s confused and it’ll take certain kidney cells for example and say “I
don’t think these should be here” and start attacking the kidney. That’s what we call an
autoimmune disease and lupus is one of those.
Dr. Desai: Since this is an immune disorder, is there any relationship to AIDS or HIV?
Dr. Hendler: Ah, we just said that the immune system can make one of two kinds of
errors; either it can let the bad guys in, or it can kill the good guys, or attack the good
guys. So AIDS is the exact opposite of an autoimmune disease. In AIDS, the immune
systems is making the mistake of letting the bad guys in whereas it’s too weak, an
immune system in other words. In the autoimmune diseases like lupus, it’s the opposite,
it’s not only strong enough, but it’s actually too aggressive and it’s attacking your brain,
your lungs, your kidney, your skin, your joints, or whatever it happens to be attacking.
Dr. Desai: Okay, so it attacks a lot of different organ systems, what are the symptoms
that we might look for in lupus?
Dr. Hendler: Um, okay. There are certain common not serious signs and symptoms and
then there are some that are more rare and are quite a bit more serious. Now first of all
I’ll say that there are typical labs that really tip us off that somebody has lupus. One of
them is called antinuclear antibody. And I won’t get into those labs because there’s
another Podcast on that. The common symptoms include ones that are completely
nonspecific, in other words, just as you can have a fever with any kind of disease; you
know the flu, pneumonia, a urinary tract infection. The fact that you have a fever doesn’t
help you at all, it’s nonspecific. In lupus there are nonspecific symptoms such as fatigue,
tiredness, fever, swelling of nodes, but there are some more typical ones that really tip us
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off. One is called alopecia and that means loss of hair, rashes are very common, sun
sensitivity is common, then ulcers on the inside of your mouth are quite common, joint
pains or swellings. Many people notice very dry eyes or dry mouth. A little bit more
rarely people get pleurisy or pericarditis which they would notice as sharp pains with a
deep breath or when they lean in a certain direction and this is not like a gas pain that will
last only a few minutes, but something that would last for days. And there’s another
common symptom called Raynaud’s where their fingers and usually not all, usually just a
couple of fingers, will turn either red, white or blue or go in between those colors when
their cold. Then there are the more rare, not everybody with lupus gets very sick, but
there are some people who have an attack on their kidneys and causes renal disease or
their lungs causing problems or their heart or even their brain which causes seizures or
psychosis.
Dr. Desai: So as a patient if one of these symptoms occur, should I run to my doctor and
ask if I have lupus?
Dr. Hendler: Well if you think you have lupus, you should run to your doctor and have
your doctor run a couple of preliminary tests and then if the doctor thinks that it’s
possible that you have lupus, if you’re in Fremont and you’re a Kaiser member, you’ll
end up seeing me. Otherwise you’ll see a rheumatologist and they will be able to
diagnose lupus if you have it or one of the sister conditions, for example, Sjögren’s.
Dr. Desai: Okay, so I’m diagnosed with lupus; what are the treatment options?
Dr. Hendler: That depends entirely on how severe the disease is. So for example, let’s
say someone only has a rash and a little bit of joint pain. Well that person would probably
take some nonsteroid over-the-counter or prescription antiinflammatory medicine and we
would instruct them to stay out of the sun, to wear a brimmed hat, to use sunblock. If
their symptoms are more severe and we really have to suppress inflammation we will use
steroids either intravenously or orally. And if they’re really having life threatening
disease, we have antimetabolites or even chemotherapy agents that we use to try and
quickly knock down the aggressive cells and there have been studies done, very well
documented that people with life threatening lupus can greatly increase their chances of
survival with IV Cytoxan or CellCept or certain medications which we use.
Dr. Desai: Okay. I’ve been diagnosed with lupus, I’ve been given treatment options, I
want more information. How do you feel about looking up information on the internet?
Dr. Hendler: Well there is a perspective that you have to understand. Imagine that
you’re a lupus expert and you’re writing a text book for doctors. Now also imagine that
if people get lupus 90-95% of them will have a benign disease and will never get in any
serious trouble, but 5% of them will get really sick and really in trouble. Well when
you’re writing your chapter, you’re going to right a little tiny bit about how to take care
of the people that aren’t going to get in trouble and you’re going to write many pages on
how to try and treat the minority of people that have the terrible conditions. So a very
common thing is somebody has mild lupus, they’re told by their doctor they have lupus,
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they go home, they look it up, they read these terrible things in the medical literature and
they think immediately that they’re going to get sick. It’s funny and there is no guarantee
with any given person, but it generally works where if a person presents with mild lupus,
they have mild lupus and it rarely becomes very severe lupus. The people that are very
sick are often are well one week then they’re very sick, a diagnosis of lupus is made and
it’s serious lupus from the get go.
Dr. Desai: Dr. Hendler, since this is a disease of primarily women of childbearing age,
is it safe for them to get pregnant? And is there any effect on the fetus if they do get
pregnant?
Dr. Hendler: Another very interesting question and one that has a long history. I
remember when I first started practice, it was believed that mild lupus could turn into bad
lupus if women became pregnant and people were advised not to become pregnant. But
there have been many, many women with lupus who have had normal pregnancies and
normal children and we do not discourage anybody who has lupus who is not currently
having a flare or a serious flare to avoid becoming pregnant. Um, some of the
medications that we give to treat lupus are not particularly good for the fetus but there are
other medicines and steroids are a big example that do not cross the placenta and can be
safely given to pregnant women without hurting the baby. So if you have lupus and its in
control or if you have lupus and it’s you know, only mild things like joint pains and skin,
we would not discourage you from getting pregnant nowadays.
Dr. Desai: And so then what about the fetus? Will it effect the child? And the broader
question of, does this run in families?
Dr. Hendler: Okay, generally a child born to a mother with lupus will not be born with
lupus. Now because the natural child of the mother obviously shares some of the genetic
makeup and that lupus is thought to work like this; you have a genetic predisposition and
then something in the environment happens which will trigger lupus and the people that
are prone to it. So it is certainly true that a child that is born to a mother with lupus is
more prone and more likely to develop lupus at sometime in that child’s life than a child
born to a parent without lupus, but I can also say that it’s way less than half and it is
certainly not anything which you should use to discourage you from having a child.
Dr. Desai: Dr. Hendler, that was a truly informative discussion about lupus, and how to
diagnose it and what to worry about. Thank you so much for your time.
Dr. Hendler: My pleasure.
Dr. Desai: I want to take this opportunity to thank our listeners for taking the time today
to listen to our Healthcast. And remember, if you’d like to listen to any of our prior
Healthcasts, please visit our website at www.kphealthcast.org . If you have any
comments or questions, please e-mail us at [email protected] . Thanks for
listening and until next time be on the lookout for more ways to THRIVE.
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