What is ? 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 . 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

Page 1 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 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 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 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 . 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 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 , tiredness, fever, swelling of nodes, but there are some more typical ones that really tip us

Page 2 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,

Page 3 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.

Page 4