Lupus: Living With Lupus

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Lupus: Living With Lupus

 

Transcript:

 

Guest:  Dr. Diane Kamen – Rheumatology & Immunology

Host:  Dr. Linda Austin – Psychiatry

 

Dr. 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?

 

Dr. 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.

 

Dr. Linda Austin:  What’s different about this disease from any others that you might have chosen to make your life’s work?

 

Dr. 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.

 

Dr. 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.

 

Dr. 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.

 

Dr. 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 time?

Dr. 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.

 

Dr. 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 partnership with?

 

Dr. 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. 

 

A lot 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.

 

Dr. 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?

 

Dr. 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. 

 

Dr. 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?

 

Dr. 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 again. 

 

But, 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.

 

Dr. 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? 

 

Dr. 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.

 

Dr. Linda Austin:  What are some of the longest periods of remission you’ve seen?

 

Dr. Diane Kamen:  I have patients who I’m still seeing, now, who haven’t had symptoms from their lupus since the 1980s.

 

Dr. Linda Austin:  My goodness!  That’s very encouraging.

 

Dr. 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.

 

Dr. Linda Austin:  That’s wonderful.  It must be very rewarding to help patients like that.

 

Dr. Diane Kamen:  Definitely.

 

Dr. Linda Austin:  Well, I can see why you chose this illness.  Dr. Kamen, thanks so much for talking with us today.

 

Dr. Diane Kamen:  Thank you.

 

If you have any questions about the services or programs offered at the Medical University of South Carolina or if you would like to schedule an appointment with one of our physicians, please call MUSC Health Connection:  (843) 792-1414.

 


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