Living with Lupus with Dr. Emily Littlejohn

Podcast Transcript

Nada Youssef:   Hi. Thank you for joining us. I'm your host, Nada Youssef, and you're listening to Health Essentials Podcast by Cleveland Clinic. Today we're broadcasting from Cleveland Clinic main campus here in Cleveland, Ohio. I'm here with Dr. Emily Littlejohn. Dr. Littlejohn is a rheumatologist and clinical assistant professor at Cleveland Clinic Orthopedic and Rheumatologic Institute.

Before we jump in, I wanted to ask you some questions off topic to break the ice if that's okay. Let's start with food because that's always my favorite subject. What's your favorite dish to cook or to buy, to eat?

Dr. Littlejohn:   I'm going to say any kind of Mexican food is my favorite kind of food.

Nada Youssef:   Mexican food.

Dr. Littlejohn:   Mm-hmm (affirmative). I love Mexican food.

Nada Youssef:   Tacos are a big to go to. How about your favorite 90s jam?

Dr. Littlejohn:   Spice Girls Wannabee.

Nada Youssef:   I love it. The last thing you watched on Netflix?

Dr. Littlejohn:   I watched the Fyre documentary on Netflix.

Nada Youssef:   The Fyre document. How did you like that?

Dr. Littlejohn:   It was interesting. It was a brain twist.

Nada Youssef:   Yes. It is, it is. Great. Before we start, please remember that this is for informational purposes only and it's not intended to replace your own physician's advice. We're talking about lupus.

Dr. Littlejohn:   Mm-hmm (affirmative).

Nada Youssef:   If you can just explain to us what is lupus.

Dr. Littlejohn:   Sure. Generally speaking, lupus is the body's inability to recognize self and non-self. The immune system essentially attacks itself and manifests in things like rashes and heart problems and lung problems and joint pain.

Nada Youssef:   Okay. So it's your immune system attacking your own body?

Dr. Littlejohn:   Correct. Mm-hmm (affirmative).

Nada Youssef:   Okay. You said symptoms and signs include rashes. What else?

Dr. Littlejohn:   Yeah. It's pretty vast. Everyone's lupus fingerprint is different, what I like to tell patients. Some people come in and they have rashes and hair loss and ulcers in their mouth and nose, very bad joint pain. Other people have heart problems, problems in their lungs, or the worst manifestation, which is lupus in the kidney, or lupus nephritis. Everyone is very different.

Nada Youssef:   Yeah. If someone feels like they have lupus, what are the first things to be looking for? Because it sounds like there's a lot of symptoms for different people.

Dr. Littlejohn:   There are.

Nada Youssef:   But what are the things that we should be looking for and saying, "If I have these things, I should go see a specialist"?

Dr. Littlejohn:   Sure. I think profound fatigue is one of the first ones, joint pain, and sun-sensitive rashes. A lot of lupus patients are very, very sun sensitive. The sun really bothers them. It makes them more tired. They can break out in rashes or have flu-like symptoms actually from the sun.

Nada Youssef:   With the sun rashes, is that just on the face or anywhere on the body?

Dr. Littlejohn:   It can be anywhere, but it's typically in a sun exposed area, so the face, the chest, the arms.

Nada Youssef:   Arms, okay. What are the causes? Is this hereditary?

Dr. Littlejohn:   Yeah. We think it's probably a few different things. It's genetically susceptible individuals. We know there's a genetic component, but then there's probably a second hit that happens, so either an allergen, an environmental exposure, a hormone, a virus. We're really not totally sure what the second hit is.

Nada Youssef:   Oh wow. Okay. I know you said the parts of the body, that was my next question. What other parts of the body does the lupus affect? You mentioned kidneys. How does that get to the kidneys?

Dr. Littlejohn:   You name an organ, and lupus will-

Nada Youssef:   Get there.

Dr. Littlejohn:   ... be there. Yes.

Nada Youssef:   Really?

Dr. Littlejohn:   In some way, shape, or form. Uh-huh (affirmative). These missiles that the body makes against itself, they end up in the bloodstream and then they get filtered in the kidney. In the kidney is kind of where they can stay and cause local inflammation.

Nada Youssef:   Wow. It seems like it's difficult to diagnose. Why is that and how do you diagnose it?

Dr. Littlejohn:   It is very difficult to diagnose. Going back to the lupus fingerprint idea, so everyone is different, so it's not standardized. It's not just a few different symptoms are going to equal lupus. The way that we diagnose it is actually from symptoms and also what we see in the blood or in the urine. There's clinical symptoms, as well as immunologic or serologic markers. Patients technically need to make a certain amount of them to really be called lupus and warrant treatment.

Nada Youssef:   Okay. What kind of testing are we talking about?

Dr. Littlejohn:   Some of the blood tests are looking for specific autoantibodies. Everyone always talks about the ANA test, which is very important, but it's by no means specific. Just because you have a positive ANA test doesn't necessarily mean you have lupus. That's a big point that I want to get across. That is important to have a positive ANA and other of these autoantibodies, but alone, that's not how we diagnose it. We usually see a patient in the clinic. They have the specific symptoms and signs and physical exam findings, and it's that in conjunction with the blood work.

Nada Youssef:   Can someone have lupus for a long time and go undetected?

Dr. Littlejohn:   Mm-hmm (affirmative). Absolutely.

Nada Youssef:   Okay. So it's important to check for these symptoms and if you feel like you have any of this fatigue, joint pain, rash in the sun, anything like that, that could be a lupus sign?

Dr. Littlejohn:   Especially in people who have family members who are also affected with lupus or other autoimmune diseases, but specifically lupus.

Nada Youssef:   So it is hereditary as well?

Dr. Littlejohn:   Correct, yep.

Nada Youssef:   Wow. Okay.

Dr. Littlejohn:   There's a component of that.

Nada Youssef:   Is there anybody that's more susceptible to this disease?

Dr. Littlejohn:   Yeah. Women of child-bearing age, so typically women between the ages of 15 and 44. It's more common in African American women and women of Hispanic dissent.

Nada Youssef:   Okay. Alright. Is there special testing you should do by a certain age if you're in that category, or is it you just wait for symptoms, like for prevention?

Dr. Littlejohn:   If there are specific symptoms, yes, but just a screening test, not necessarily.

Nada Youssef:   Okay, okay. Then let's talk about food and drinks. Are there any kind of food or drinks that can trigger lupus?

Dr. Littlejohn:   Triggering a flare, yes. We usually have patients avoid garlic and alfalfa sprouts. Those are typically known to be pro-inflammatory. In terms of foods that actually cause lupus, no, there are none.

Nada Youssef:   Okay.

Dr. Littlejohn:   Garlic and alfalfa sprouts.

Nada Youssef:   It's for patients that already have lupus?

Dr. Littlejohn:   Correct.

Nada Youssef:   It can cause a flare. Let's talk about those flares. What is a flare?

Dr. Littlejohn:   A flare is typically different for everybody, but typically joint pain, fatigue, rashes. Some people have high blood pressure if they have kidney lupus. Everyone's is a little bit different, but typically people feel kind of like they're having the flu.

Nada Youssef:   Yeah. Is there any food that helps with lupus at all?

Dr. Littlejohn:   Generally speaking, we have patients just eat a very heart healthy diet.

Nada Youssef:   Heart healthy.

Dr. Littlejohn:   Because lupus is an inflammatory process, so it can inflame all different organs and vasculatures. Eating a heart healthy diet, micronutrient rich is the best thing to prevent flares.

Nada Youssef:   Okay, great. Would you say that lupus then is like a fatal disease?

Dr. Littlejohn:   It can be, although survival trends have actually really improved. Back in the 1950s, survival rates were about 50%, but as of 1995, they were higher than 95%. It can be fatal if it's not treated properly or caught early enough, but now we have a lot of different things in place in terms of treatment and screening that can really help people survive.

Nada Youssef:   Can it be cured?

Dr. Littlejohn:   It can be put into remission.

Nada Youssef:   Okay. Remission meaning that it could come back as well?

Dr. Littlejohn:   Mm-hmm (affirmative).

Nada Youssef:   So it's not completely cured?

Dr. Littlejohn:   Correct.

Nada Youssef:   Okay. How do you treat for lupus?

Dr. Littlejohn:   There's different tiers of treatment. They start with certain medications that people will take every day in a pill form. Then you sort of move up in tier from there, depending on the different symptoms. For example, patients with joint pain get put on certain medications versus patients who have just lupus in the blood that we see causing low counts or anemia, they might get a different medication. Typically, we give them medications that are immunosuppressing, which means it slows down the immune system, so things like chemotherapies can be used, certain medications that we use to treat rheumatoid arthritis and other meds that kind of just slow down the immune system.

Nada Youssef:   You use chemo for lupus?

Dr. Littlejohn:   Mm-hmm (affirmative). Yeah, just to be clear, chemo, what that word really means is that chemotherapy is modifying the immune system, so it's slowing down the immune system. We don't necessarily use it in the dosages or the forms that are used in the cancer world, but we do take their medications and use them for lupus.

Nada Youssef:   So smaller dosage of chemo?

Dr. Littlejohn:   Different dosages, yeah, and less frequent.

Nada Youssef:   Less frequent?

Dr. Littlejohn:   Mm-hmm (affirmative).

Nada Youssef:   Okay. What can be done to improve quality of life for someone with lupus?

Dr. Littlejohn:   That's a good question. I think the big thing that I tell my patients when they get diagnosed with lupus, especially in the younger population, is support groups are huge and knowledge is power. Having patients really research what's going on with them, their medications, certain maintenance things that they need to do in terms of their heart and their reproductive health, those types of things.

Nada Youssef:   How about what would you say to someone, let's say, going on vacation and there's a lot of sun? What would you say to those people?

Dr. Littlejohn:   Yeah. Being sun aware is very important in our patients. Sun exposure can induce a flare. Sun exposure on the skin can even induce a flare in the kidneys, believe it or not. Broad spectrum SPF is huge, at least 30 if not higher, applying liberally every two hours, every time you go into the sun or into the water or you're sweating to reapply. Of course, this is not a substitute for avoiding the sun completely or sun protective clothing.

Nada Youssef:   Okay, so cover up as much as you can.

Dr. Littlejohn:   Mm-hmm (affirmative).

Nada Youssef:   Absolutely.

Dr. Littlejohn:   Avoiding the sun is best.

Nada Youssef:   Okay. The sun itself, the sun ray can give you a flare?

Dr. Littlejohn:   Mm-hmm (affirmative). Both UVA and UVB rays, mm-hmm (affirmative).

Nada Youssef:   Oh wow. Okay. Alright. Let's see. How about women that want to get pregnant? Because you were saying it's for childbearing age usually get it. Can they still get pregnant, and is it risky?

Dr. Littlejohn:   Yeah. Lupus itself is a risk for poor pregnancy outcomes, but we've come a long way. It is safe for patients who have lupus to get pregnant, for the most part. There are instances where we just really want them to avoid it. Another thing to keep in mind is a lot of the medications we put patients on for lupus we have to make sure that those are safe for pregnancy. The lupus needs to be controlled and they need to be on the correct medications in order to get pregnant.

Nada Youssef:   Okay. The medications kind of don't mess with pregnancy then? Or do you need to be off-

Dr. Littlejohn:   They do. They're teratogenic, mm-hmm (affirmative).

Nada Youssef:   Oh wow.

Dr. Littlejohn:   Yeah. You really need to talk to your doctor three to six months before you're even trying to conceive to make sure the lupus is controlled and also to put you on medications that are safe for pregnancy.

Nada Youssef:   Okay. You mentioned that it really affects more women than men.

Dr. Littlejohn:   Mm-hmm (affirmative).

Nada Youssef:   Is there a reason?

Dr. Littlejohn:   Yeah. I wish we knew.

Nada Youssef:   Do we know?

Dr. Littlejohn:   I think that it probably has something to do with hormones. It might also have something to do with the fact that women have two X chromosomes, so the presence of two X chromosomes versus an X and a Y, which we see in men, may have something to do with the different genes that are expressed.

Nada Youssef:   Wow. Alright. Let's talk about like there are different types of lupus, correct?

Dr. Littlejohn:   Yeah. There are different types of lupus.

Nada Youssef:   Can you talk about that?

Dr. Littlejohn:   Sure. Some people have lupus just in the skin, so that's sort of skin lupus. You might think of people like Seal who has lupus on his skin. You can have lupus in the blood, or systemic lupus is what we call that. There's also something called neonatal lupus, which is when the lupus crosses the placenta and causes lupus in the baby. The last one that we don't see as much is drug-induced lupus, so certain medications can induce a lupus-like syndrome.

Nada Youssef:   Even if you don't have lupus?

Dr. Littlejohn:   Correct.

Nada Youssef:   It can induce lupus with drugs?

Dr. Littlejohn:   Yep. Some medications can do that.

Nada Youssef:   Okay, okay. Let's see. At what point should you see a rheumatologist then? When someone just like we said about the diagnosis earlier or the symptoms, when do you think patients should go see a specialist for lupus?

Dr. Littlejohn:   Typically, patients come to us after they've been seen by their primary care doctor. They have these symptoms that have been ongoing, they're kind of nonspecific, like I said, fatigue or brain fog, and the setting of joint pain or rashes. They might have canker sores in their mouths or have high blood pressure and new kidney disease. They see their primary doctor, who typically will screen for some tests for lupus, whether it just be basic blood work or more specific blood work. Certainly, if a primary care physician can't figure it out or has questions, I would say always refer because we're always having new tests that come about and new ways to screen patients for lupus. That's usually done best by a specialist.

Nada Youssef:   It sounds like there is usually definitely more than one symptom. It's not just brain fog. It's not just fatigue. There's definitely like a few you would say, like three or four symptoms, "If you have these, then see a specialist."

Dr. Littlejohn:   Correct. Mm-hmm (affirmative).

Nada Youssef:   Okay. What is the biggest complaint that you see from your patients that have lupus?

Dr. Littlejohn:   I think joint pain is a big one. Overall fatigue from anemia is a big one also. Patients just feel really worn out and the blood work shows that they have some abnormalities in the bone marrow and in the peripheral blood. That is another big reason. Some women come in and they've had recurrent miscarriages or blood clots, and their primary care doctor checked some tests and it's just for lupus. It's really a mixed bag, I have to be honest. I think fatigue, joint pain are probably the biggest ones.

Nada Youssef:   Okay. Besides treatments, which, by the way, do you do treatment the same thing for if it's on the face or in the blood? Is it the same treatment?

Dr. Littlejohn:   A little bit different.

Nada Youssef:   It's all different. Okay. For something like joint pain, exercise, should that help any? Because I know fatigue is a big one. I don't know how that would go with exercise, but does exercise help?

Dr. Littlejohn:   Exercise always helps, in my opinion. Staying healthy, staying active, especially to keep the joints moving. Specific medications that we would use can include prednisone at very low doses and methotrexate. We usually like to put someone on a medication to prevent long term use of prednisone, but yes, movement and also medications.

Nada Youssef:   Right, right. Do you do any kind of rehab with like a specialist for joint pain or no?

Dr. Littlejohn:   Occupational therapists are incredibly helpful, so are the physical therapists.

Nada Youssef:   So they do see lupus patients?

Dr. Littlejohn:   They can. Mm-hmm (affirmative). Absolutely. Oh yeah, absolutely. Keep mobility of the joints.

Nada Youssef:   Okay. Can we go a little bit in detail with treatments for the different lupus? Something for the skin, what is the treatment for that?

Dr. Littlejohn:   The first line is usually topical medications, so topical steroids or other topical creams. The dermatologists actually usually manage it if it's just topical.

Nada Youssef:   Okay.

Dr. Littlejohn:   Yeah. That's the first line. Every patient with lupus that I see is on Plaquenil, or hydroxychloroquine, which is a medication that is really wonderful for lupus. It takes awhile to really get into the body and start working, but it decreases inflammation peripherally and can actually help with rashes as well.

Nada Youssef:   Okay. Are these medications, are they making your immune system stronger?

Dr. Littlejohn:   They are suppressing the immune system in that they're stopping the body from attacking itself, but at the end of the day, yes, they are helping the immune system to be stronger because you're preserving your body functioning.

Nada Youssef:   That's why I would think like exercise, sleep-

Dr. Littlejohn:   Oh yeah. Sleep is huge.

Nada Youssef:   ... diet is huge, right?

Dr. Littlejohn:   Diet is a very big one too.

Nada Youssef:   Especially sleep. Sleep is affecting everything. Stress, all that could be factors?

Dr. Littlejohn:   Mm-hmm (affirmative).

Nada Youssef:   Okay. She's flying. I'm trying to think. Okay. Let's see. If sun may cause a flare, what does a tanning bed do?

Dr. Littlejohn:   Probably would cause a flare as well. Tanning beds are some of the worst things that lupus patients can do.

Nada Youssef:   Probably worse than the sun.

Dr. Littlejohn:   Uh-huh (affirmative). Yes.

Nada Youssef:   Yeah. Just the chemicals and everything like that.

Dr. Littlejohn:   Mm-hmm (affirmative), mm-hmm (affirmative). Some lupus patients too, we know that lupus comes with a risk of other diseases, specifically cancer, so patients who have lupus have a higher risk of leukemias and lymphomas, also a higher risk of GI cancers, so biliary cancers, esophageal cancers, and some other types of just long term problems, cardiovascular disease and those types of things, osteoporosis, avascular necrosis.

Nada Youssef:   So then if you have a patient with lupus, and if it's a bad case, do they get a colonoscopy earlier? Do they get all this stuff checked out just for cancer screening?

Dr. Littlejohn:   That's a great question. The biggest thing I think when someone gets diagnosed with lupus, especially when they're young, is to make sure that they seek preventative cardiology because they are at an increased risk of atherosclerosis and inflammation. Then to keep in mind that they probably will need screenings for other things. A low threshold to screen if they have certain symptoms, whether it be reproductive health issues, cervical cancer, pap smears, or mammograms, those types of things.

Nada Youssef:   Great. With men, I know we talked a lot about women, now men still get lupus.

Dr. Littlejohn:   They do.

Nada Youssef:   Are they the same symptoms as women?

Dr. Littlejohn:   I don't want to generalize, but typically, the men that I see that have lupus are a little bit older, tend to have just different manifestations. They're not as run of the mill lupus as we normally see. They can be of all ages and all sorts of symptoms, but they are a little bit different.

Nada Youssef:   Okay. Great. If you are pregnant and you have a child, is that child most likely going to have it since it's hereditary? Is it something that you should worry about?

Dr. Littlejohn:   That's a good question.

Nada Youssef:   Then how does it affect a newborn? I can imagine a newborn with these kind of symptoms ... Does it start from that age?

Dr. Littlejohn:   Mm-hmm (affirmative). Certain lupus patients, depending on what their blood work shows, they can have a certain antibody that we know that can cross the placenta and affect the baby, specifically the heart of the child. We call that cardiac neonatal lupus. The antibodies can also affect the baby and cause skin lupus. Depending on what the profile is for the patient, again, going back to that fingerprint idea and what their blood work shows, they can be at high risk of passing on the lupus to the child in some respect. If that's the case, we work very closely with the OB/GYNs. We share patients all the time who are at high risk for that.

Nada Youssef:   Yeah. That's scary because if this is an immune system attacking your body, and the baby barely has any immune system at that point, especially a newborn. Something like the organs that are being affected, like the kidneys or the heart, something with a newborn, can you go a little bit into the organs being affected?

Dr. Littlejohn:   Yeah. The big one is the heart that we worry about, the epicardial cushion. That can be affected in the child and cause heart blocks, so a very slow heart rate. The OB/GYNs know that these patients need early screenings of early ultrasounds to make sure that the baby is not affected. If a patient has had a previous pregnancy with a child who's affected, there are some things that we can do to prevent it going forward in a subsequent pregnancy, but it's very difficult to manage once the baby's affected.

Nada Youssef:   You're saying you can prevent it from passing on?

Dr. Littlejohn:   There is some evidence that some medications can, mm-hmm (affirmative).

Nada Youssef:   Some medications the mom can take while pregnant?

Dr. Littlejohn:   Correct.

Nada Youssef:   Oh, very interesting.

Dr. Littlejohn:   Mm-hmm (affirmative).

Nada Youssef:   Okay. Can you catch lupus? Is it something that can be contagious in any sense? When I think of rash, I think of contagious. Is that a thing?

Dr. Littlejohn:   No. You cannot catch lupus, no.

Nada Youssef:   Okay. Do people with lupus get sick more often?

Dr. Littlejohn:   Yeah. I would say that's probably true. Also, the medications that we give them put them at risk to get infections, so it's kind of a double edged sword there. Their immune system is a little bit dysregulated to begin with, but then when we treat them, we also immunosuppress them. I tell patients anytime that they get a fever or they get an infection and get put on antibiotics for any other reason, we usually hold their medications so that their body can kind of recuperate, and then we put them back on them.

Nada Youssef:   So something like vaccines like the flu or etc., that's all good for patients with-

Dr. Littlejohn:   Absolutely.

Nada Youssef:   ... lupus?

Dr. Littlejohn:   They should always be getting the flu vaccine. Depending on what medications they are put on, they should be getting other vaccines as well. That's an important thing to discuss with a rheumatologist.

Nada Youssef:   Okay. Great. Okay. See here what we got. She's really flying, you guys. How long have we been sitting here? 20? Okay. So I'm going to keep going then. We're good.

Is there anything else that you wanted to bring up that maybe we haven't touched on when it comes to lupus or the patients, anybody that's listening that could be worried they may have lupus or a loved one?

Dr. Littlejohn:   I think a big thing I would want to convey to lupus patients is to be your own advocate because it really takes more than just one physician or even two to manage everything going on with a lupus patient. They need a very strong relationship with their primary care doctor for the basic screening tests, and also with the rheumatologist and probably more specialists than just that. A lot of patients I see, it's myself, it's a nephrologist, it's their primary care doctor, and sometimes it's a pulmonologist and a cardiologist. It's important for the patient to keep a relationship with all the physicians because it's really not just one area or one specialist who's going to be managing all of their care. It's really a multi-system approach.

Nada Youssef:   Great. It's different specialists working together. Just like you said, there's different organs, skin, everything like that.

Dr. Littlejohn:   Mm-hmm (affirmative).

Nada Youssef:   If you're experiencing anything with the lupus symptoms, do you go straight to a specialist, or do you go to primary care physician and then get referred?

Dr. Littlejohn:   I think the primary care physician first and then via a rheumatologist to send them anywhere else they need to be sent.

Nada Youssef:   Great.

Dr. Littlejohn:   Mm-hmm (affirmative).

Nada Youssef:   Thank you so much for being here.

Dr. Littlejohn:   You're very welcome.

Nada Youssef:   It's been a pleasure.

Dr. Littlejohn:   Thanks for having me.

Nada Youssef:   Thank you. For more information or to make an appointment with a rheumatologist, call 216-444-2606 or visit clevelandclinic.org/lupus for more information. Thanks again for joining us today. To listen to more of our Health Essentials Podcast from Cleveland Clinic experts, make sure you go to clevelandclinic.org/hepodcast, or you can subscribe on iTunes. For more health tips, news, and information, make sure you follow us on Facebook, Twitter, Snapchat, and Instagram @clevelandclinic, just one word. Thank you. I'll see you again next time.