Living With Lupus
Guest: Dr. Diane Kamen – Rheumatology &
Host: Dr. Linda Austin – Psychiatry
Linda Austin: I’m Dr. Linda Austin. I’m interviewing Dr. Diane Kamen, who is
Assistant Professor of Medicine, here, in the Division of Rheumatology, at
MUSC. Dr. Kamen, I know your great
passion is lupus, a very interesting disorder.
How did you get interested in this illness?
Diane Kamen: Well, Linda, I went to
college at Northwestern and while I was there, I met a rheumatologist, Dr.
Ramsey Goldman. I worked for her as a
student and then later as a study coordinator.
She was doing a lot of clinical research in lupus, and that was actually
the first I’d heard of the disease.
While I was working for her, I discovered that one of my college
classmates had lupus. I was meeting a
lot of patients there and really fell in love with trying to find a cure,
treatments and eventually a cure for the disease.
Linda Austin: What’s different about
this disease from any others that you might have chosen to make your life’s
Diane Kamen: In rheumatology, we study
and treat a lot of other autoimmune diseases, but lupus is what we consider the
prototype. With lupus, there are over
100 of these antibodies directed against self, against your own body, so it can
really affect any part of the body. And,
in that way, it’s sort of a more mysterious disease. We feel like if we could find out what causes
lupus, find a cure for it, we’ll really be finding cures for other autoimmune
diseases as well, because lupus encompasses so many of them.
Linda Austin: What is life like for
somebody who has lupus? How does it
affect them? It must take many different
forms given that the disease can take many different forms.
Diane Kamen: Absolutely. No two patients are the same. The fact that it affects mostly young women
of childbearing age, it can, very much, affect the family and having
children. It can affect them
cosmetically and physically as well, with the rashes; the disease can be
triggered by sunlight. This can affect
the patient’s activity level, what they can do day to day. Fatigue is often a part of the disease, and
that’s something that makes everything difficult, when you’re sleeping and
still feeling very tired and drained during the day. Other features of lupus are problems with thinking
clearly. It can be very mild and almost
unnoticeable, but other people with lupus can have it more severely where it
causes problems, like seizures and hallucinations. There’s a wide range of ways lupus can affect
a person and all of them can potentially affect their day to day life and,
really, the ability to do things they want to be doing.
Linda Austin: I would imagine, for any
person, especially a young person, getting this diagnosis, there must be a real
period of adjustment while you’re coming to terms with it and learning what
it’s all about. What words of advice
would you have for someone who has just heard this diagnosis for the first
Diane Kamen: Not to be alone, talk to
people and family. We have support
groups set up for people with lupus. Not
everybody feels that a support group is where they want to go, but at least
knowing that they exist. The
relationship with your doctor is also important. Here at MUSC, we have a lupus group. We have a big group of people and we’re all
about lupus, the study coordinators, the nurses, physicians. We all meet and talk about ways that we can
help people in the community with lupus.
Linda Austin: So, if you’re looking for
a doctor, if you’ve gotten that diagnosis, and knowing that you’re going to be
working with this doctor for a long time, what are some of the things that a
person can ask their doctor by way of screening that person or getting to know
them or figuring out who would be the best person to enter into this
Diane Kamen: I think someone who has a
focus on preventive care as well as treating the disease activity. When the disease is active, it’s obvious to
not only the patient, but to the doctor.
You see, right in front of your face, you have a rash or kidney problems
or joint swelling. And that’s something
that can be treated with drugs like steroids and immune-suppressing
medications. But, an important aspect
that I hope gets addressed in a lot of cases with lupus patients is the
preventive care, things like staying up to date with vaccinations and cancer
screening. Heart disease is a really
important one too.
of times people don’t think about these young women, young people, having
significant heart disease and other vascular disease with lupus. And we don’t think it’s from the
medication. We believe it’s from the
disease itself. And that might not be
obvious just looking at the person sitting in the exam room.
Linda Austin: In another podcast, I want
to go into that aspect in a lot more detail because I know that’s an interest
for you. But, getting back to just
choosing a doctor, in your observation, do rheumatologists vary as to how
active they remain with the patient during the periods of remission?
Diane Kamen: Yeah, definitely. There are a lot of individual styles. Some of us are more into doing quality of
life assessments and, maybe, more extensive lab work and assessments about how
the disease is doing than others. And we
don’t really know the right answer. A
lot of patients will tell me, I don’t
want to be seen and checked on that often.
I just want to call when I feel like I’m having a flare, whereas
other people really want that peace of mind, that everything’s being checked on
a certain schedule. So, it depends on
the patient and the doctor. It’s not
just one or the other. I don’t think any
of us would be able to force a patient to stick to a certain schedule of
checkups. We don’t really know what the
right answer is as far as what the best schedule would be.
Linda Austin: Let’s talk a little about
the periods of remission in this illness.
What sorts of patterns do you typically see in terms of how long the
patches of illness last and then how long the periods of remission last?
Diane Kamen: Most commonly, with lupus,
it’s going to be a gradual onset. We can
call it insidious, meaning, usually when someone gets the diagnosis of lupus,
they can look back and see that they’d had symptoms building for quite some
time. And then it, sort of, will do this
waxing and waning thing with the disease being active. Some symptoms will come and go over
time. And, maybe with medication,
something like Plaquenil or low doses of prednisone, it can be controlled and
pretty quiet for years, can stay in remission.
It’s extremely rare to have prolonged remissions off of all
medicines. So, that is something that I
tell people. It’s a lifelong disease and
you never really know, even after years of remission, when things can flare up
the most common presentation is, sort of, this waxing and waning. Now, every once in awhile, someone will have
extremely severe disease affecting multiple organs and it will be a sudden
onset. Those are the people that need
very aggressive treatment very early so that they don’t have damage to their
kidneys or heart, or other organs, down the road.
Linda Austin: How common is it for the
disease to be well enough controlled with medication that the person might have
a year or more at a time when they’re pretty symptom-free?
Diane Kamen: We’re seeing that more and
more, which is great. It used to be that
if the organs were involved, with lupus, there wasn’t a whole lot we could do. We were using a lot of steroids, and they had
their side effects and problems down the road with using the steroids. But, now, we’re starting to see, with some of
the newer therapies, people go into these long remissions and do great.
Linda Austin: What are some of the
longest periods of remission you’ve seen?
Diane Kamen: I have patients who I’m
still seeing, now, who haven’t had symptoms from their lupus since the 1980s.
Linda Austin: My goodness! That’s very encouraging.
Diane Kamen: Yeah. And they were sick enough then that they
remember and they still take their daily medication, and they still come in for
checkups, but it’s been good news.
Linda Austin: That’s wonderful. It must be very rewarding to help patients
Diane Kamen: Definitely.
Linda Austin: Well, I can see why you
chose this illness. Dr. Kamen, thanks so
much for talking with us today.
Diane Kamen: Thank you.
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