Here and Now: Looking at Lupus

WABC-TV—New York—June 3, 2012

“Here and Now” moderator Sandra Bookman discussed the autoimmune disease lupus with Dr. Mary Crow, physician-in-chief at Hospital for Special Surgery. During the interview, Dr. Crow was also identified as the director of rheumatology research and associate chief of rheumatology at Hospital for Special Surgery, as well as the co-director of the Mary Kirkland Center For Lupus Research. Kaamilah Gilyard, a lupus patient who was diagnosed when she was 17 years old, also participated in the interview.

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Dr. Crow: Lupus is a very serious disease and it can be deceptive. [Kaamilah], you describe symptoms many people can have, some weight loss, some fatigue. The reality is that lupus can be very, very serious. You can get arthritis; kidney disease, to the point that some patients take kidney transplants; and brain disease.

Bookman: When we say autoimmune disease, that means it sort of has the body attacking itself? Or is that oversimplifying it?

Dr. Crow: I think that’s a reasonable way to describe the situation. The immune system is what we have to fight infections; it’s a very important part of our body. It involves many cells and many molecules. But in lupus it’s true that the immune system directs itself to the components of cells in a way that is not fully understood but it’s very actively studied. What happens is many different parts of the body can be affected. I mentioned some of them but heart disease is sometimes hidden in lupus patients. Patients can get heart attacks.

Bookman: So, in addition to treating the lupus, you have to treat other diseases in many lupus patients?

Dr. Crow: Absolutely. And be very alert to them. I think as we learn more and more through our research studies, we’ve become aware of the risks of cardiovascular disease, the risk of pregnancy complications, poor outcomes during pregnancy. When we’re aware of these other problems, increased risk of infections, I think we’re a little more alert to very aggressively treating the disease with some of the medication that Kaamilah has been on.

Bookman: She’s talking about other issues. Have you had that experience?

Gilyard: Yes. I suffer from arthritis. I was actually hospitalized two years ago for brain swelling, commonly called a lupus headache. Blood clots, anemia, just all sorts of things.

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Bookman: I have to ask you Dr. Crow, why is lupus so much more prevalent in African-American women than other women? And it’s more prevalent in women than men?

Dr. Crow: Honestly, it’s very difficult to get a grip on the absolute numbers because lupus can be subtle and lupus can be severe. Certainly Caucasian women and men can get lupus but I think the fact is that African-Americans and some Asian groups and some Hispanics can get particularly serious and severe lupus where their manifestations might be more likely to be life threatening in some cases. But the question pushes us to think about genetics and genetics is an important part of lupus.

Bookman: Is it usually hereditary?

Dr. Crow: To some degree it is. Sometimes families have several individuals with lupus, or what is interesting, from the genetics point of view, is several autoimmune diseases can aggregate in one family. You might have someone with lupus, someone with diabetes, somebody with rheumatoid arthritis. So there are common genetic features that go across all of these and then unique features obviously.

Bookman: You’ve been doing the research for a long time. I suppose even knowing that perhaps puts you at a half step closer to trying to unlock the key as to what triggers this kind of disease.

Dr. Crow: Well, I’ve been studying lupus for many, many years and what we have learned is that technology drives advances, so there have been many advances in science and technology that we then apply to the problem of lupus. The genetics as I mentioned is one of the areas that is moving quickly. We’ve learned a lot about the immune system and we used some of those hints to bring in new medications. Plaquenil, which you mentioned, was really only used in some patients 15, 20 years ago, but now we use it in almost all patients because it does provide significant help to patients with lupus.

Bookman: What you’re finding is that you have to find the medicine that works specifically for each person and sometimes it’s a combination of things?

Dr. Crow: That’s true. Lupus is very different from one person to another which is one of the challenges for patients and for doctors. There’s a lot of research going on to try to identify new medications, what we call targeted therapies, that will target the immune system and certain parts of the immune system.

Bookman: And of course, any time you talk about medications at this level you’re talking side effects.

Dr. Crow: And I’m sure Kaamilah can tell you about that. Steroids, or prednisone as you mentioned, is a reasonably effective drug for patients with lupus but it’s often needed in very high doses and those high doses have significant side effects.

Bookman: What are some of the side effects you’ve had to deal with?

Kaamilah: I actually still take steroids but I’m also on a clinical trial now so I take less than what I was taking before. Back when, like when I mentioned the brain swelling, I was on a huge dose, 80 milligrams a day. Right now I’m down to 12.5, thankfully. But some of the side effects are sleeplessness, you wake up sometimes during the night, you can’t get back to sleep. Racy thoughts, weight gain. I’ve gained probably close to 40 pounds since I’ve started to take the steroids. Hunger all the time, always hungry. Sweating, thirsty. Just a lot of things.

Bookman: But you need the medication?

Kaamilah: I need it.

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Dr. Crow: Lupus can present in a very subtle form or it can be very dramatic. But many of the symptoms that you [Kaamilah] described are common, fatigue, it can kind of creep up on you, and I think it’s very important is to see a doctor when you have that combination of symptoms and expertise matters. It’s a rheumatologist that’s best at diagnosing and treating lupus.

Bookman: Kaamilah mentioned that she started getting these symptoms at puberty. What are some of the triggers?

Dr. Crow: That’s a fascinating statement. I certainly buy into something very important about moving into the child bearing years that I think is a trigger for lupus. We just don’t understand the molecular aspects of exactly how that works but lupus is a disease of the child-bearing years so moving through puberty is a common turning point. Infection, virus infection, sunlight, and certain drugs can be other triggers of the disease.

Bookman: What should a patient ask to be tested for or do you need to wait for your doctor to say you need to be tested for lupus, especially if you’re an African-American woman having these unusual symptoms?

Dr. Crow: Lupus is what we call a clinical diagnosis, that is, it’s the whole picture that experienced doctors often recognize but there are some blood tests that can at least be a tip-off. So if an individual thinks they may have lupus, you certainly can go to your doctor and say I think I might have lupus and there are certainly some blood tests that can be done that can then be a tip-off to do further evaluation and refer to a specialist.

Bookman: Say, someone in Kamilla’s case where the doctor knows who might get it, when they might get it but no one ever looked at her for that for a while.

Dr. Crow: I think this is a story we hear from many patients, but you have to be persistent.

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Bookman: How important is research to understanding lupus?

Dr. Crow: Research is the key and research has already made a tremendous difference to advances in treating patients. I work with an organization called the Alliance for Lupus Research (ALR). This is one of the large lupus research funding organizations.

Bookman: And does it get the funding? Is it hard to get that money if there are so many other causes out there?

Dr. Crow: Lupus patients are among the strongest advocates. We need more money particularly in these times where the National Institutes of Health are cutting back significantly. We really depend on the foundations and patient advocacy but the ALR has been in existence for about 11 years and in those 11 years I’ve seen several new directions take off at the science level that have led to new therapies. About a year or so ago, finally after about 50 years, we’ve had a new drug therapy approved by the FDA for lupus patients and this is really a result of that research so it is very important that research is funded, investigators perform their research, and I think it’s going to pay off.

Bookman: But aren’t there some lupus drug therapies that aren’t necessarily that new, but aren’t very good for African-American women even though African-American women are most of the lupus patients?

Dr. Crow: There are many drugs as Kaamilah describes, steroids particularly, that lupus patients are almost forced to take because they’re almost all we have at this point but can have a lot of side effects. African-Americans, Caucasians, and others can have side effects from the medications but, yes, some are very old. The Plaquenil that you mentioned has been around for many, many years, and steroids have been around for about 52 or 53 years, that the effect of lupus, rheumatoid arthritis, was discovered.

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Bookman: And the website for people who want more information or how they can give?

Dr. Crow: LupusResearch.org has a lot of information. Our hospital’s website, www.hss.edu, also has a lot of information for lupus patients.

This interview originally appeared at abclocal.go.com.