Autoimmune Diseases When the Body Attacks Itself with Dr Howard Smith

Podcast Transcript

Nada Youssef: Hi, thank you for joining us, I'm your host Nada Youssef, and today we have Dr. Howard Smith, rheumatologist in Cleveland Clinic. Today we're taking your questions regarding autoimmune diseases. So if you guys have any questions please leave them in our comments section so we can read them live. Please remember this is for informational purposes only and not intended to replace your own physicians' advice. So let's go ahead and get started. Thank you so much for being here today.

Howard Smith: You're welcome.

Nada Youssef: So if you wanna go ahead and start by introducing yourself to our viewers. 

Howard Smith: Sure. My name is Howard Smith, I'm a rheumatologist, and I'm the director of the Lupus center here. My interest is in autoimmune diseases, and specifically lupus, systemic lupus erythematosis. 

Nada Youssef: Thank you. Well, let's start with a general question. What is autoimmunity?

Howard Smith: Great. So autoimmunity is when the body reacts to itself and causes a disease. Normally we have to recognize what is ourself and what is not ourself. And bacteria and viruses are not ourself. And we have to get rid of them to protect our own health. But we also have to recognize when things are ourself, like when our own skin is ourself. And people who develop autoimmune diseases react and reject their own tissues of their body, healthy tissues, and reject them. So autoimmunity is the body reacting to self, your own components. 

Nada Youssef: Great, and what causes them and who gets them?

Howard Smith: Well, we don't know necessarily what causes it, but there are lots of factors that are involved. Autoimmune diseases in general tend to affect women more than men, so we think that maybe hormones and estrogens have some role in them, and sometimes environment affects autoimmunity. Women with lupus develop autoimmune diseases when they're out in the sun at times. So sun sensitivity can be part of it. There are some environmental factors, there are some chemicals that can cause autoimmune diseases. Sometimes people get autoimmune diseases after certain infections. So the bottom line is we really don't know, but it's, we like to say, multi-factorial. There's also genes involved. Autoimmune diseases tend to run in families. So there are lots of factors, we don't understand it completely. 

Nada Youssef: So, hereditary as well?

Howard Smith: Part of it, yes. 

Nada Youssef: Great. Well, let's start with our first question, we have Sharon, she submitted her question: "If you have had an autoimmune disorder, could it cause you to get another one?" 

Howard Smith: Yes, so, people who have one autoimmune disease, often have a higher chance of developing a secondary autoimmune disease. People, let's say, with lupus, can't have another autoimmune disease. People who have celiac disease which is another autoimmune disease, can have other autoimmune diseases. So there are lots of autoimmune diseases. And I might add that if you take the entire numbers of autoimmune diseases a lot of people have them. If you consider, there are autoimmune diseases of the intestines, like ulcerative colitis, Crohn's disease. There's psoriasis on the skin, there's lupus, there's rheumatoid ... there are lots of autoimmune diseases. And it affects a significant portion of the population.

Nada Youssef: Sure, sure. 

Howard Smith: Most people know someone who's had an autoimmune disease. 

Nada Youssef: Interesting. And is there any way that you don't know that you have it, or ...

Howard Smith: Well, if it's serious, it'll rear its head and you will find out.

Nada Youssef: Alright, well onto the next question, I have Joithe: "I just diagnosed with lymphedema, and I also have many other ilnesses and autoimmune problems. My hair is falling out a lot and I get very weak. Do you think the hair loss could be autoimmune related?"

Howard Smith: So, there are autoimmune diseases that attack the hair follicles. Lupus is one of them, and people make antibodies and have an immune reaction to the hair follicles and the scalp itself, and hair loss is part of lupus. But there are lots of the reasons for hair loss. You can get hair loss with aging, there's male pattern balding and women get some of that as well. There's loss of hair after pregnancy, a lot of physical or emotional stress can cause hair loss, so there's lots of reasons for hair loss. One of them is autoimmune.

Nada Youssef: Okay, makes sense. Thank you. And we have Allison: "How much do you think nutrition and choosing an anti-inflammatory diet affects autoimmune disease?"

Howard Smith: Okay, this is a great question 'cause it's a particular interest of mine. There are beginning to be evidence on the role of diet and nutrition on autoimmunity and inflammation in general. I'm very fond of saying you are what you eat. The building blocks of our body are made of what we eat, and I tell my patients, garbage in, garbage out. And there appear to be bacteria in our gut that make pro-inflammatory molecules, molecules that promote inflammation and different sets of bacteria that make anti-inflammatory mediators, anti-inflammatory chemicals. And part of that relates to diet, because what we feed our bacteria determines which bacteria we have. So, we're just beginning to understand the role of diet in autoimmune diseases. And it's actually something that we're actively studying at Cleveland Clinic, and in our lupus center we're beginning to look at that. 

Nada Youssef: Great, and we're very excited to hear more. Let's see we have Kristie-Jo: "I had rheumatoid arthritis as a child, however I am in constant pain despite being a healthy, fit adult. Did the arthritis leave me with damage?"

Howard Smith: It could, sure. So, let's just take an unrelated example. If you break your leg, people can have pain in their leg years later, and the fracture of their leg has healed years and years ago. As the same thing with rheumatoid arthritis, you get joint damage, and the inflammation may be gone but the pain may persist.
Nada Youssef: Okay. And then we have Laurie: "Is fibromyalgia autoimmune?" 
Howard Smith: No. So, fibromyalgia is a common disease. It probably affects somewhere around 5% of women. 1 out of 20 women have fibromyalgia. But, all the lab tests in fibromyalgia are normal, and there doesn't appear to be an autoimmune basis. Now, some of my lupus patients have co-existing fibromyalgia, so it can be seen with other conditions. But fibromyalgia itself is not autoimmune.

Nada Youssef: Okay, good to know. Thank you. And we have Jenna: "What does unspecified autoimmune disease mean?" 

Howard Smith: So, there are a lot of different types of autoimmune diseases, and some of them we haven't been able to pinpoint, or be able to categorize them. So in rheumatology, there are various terms that are used. One of them is undifferentiated connective tissue disease. That is, we know the patient has a rheumatologic and arthritis type of problem, but we can't pigeonhole it into saying, this patient has rheumatoid, lupus, scleroderma. And so because of several reasons, one is, is it like the early on of the disease, and sometimes I tell my patients it's like I'm examining and animal blindfolded and I don't know which animal it is, but I know it's got a tail. So it's this and this type of disease. So I can limit it to a certain type of arthritis, but if we can't define that it's specifically rheumatoid, lupus, et cetera, we call it undifferentiated. And sometimes, a year later, we figure out, because the patient gets more symptoms we can figure out.

Nada Youssef: That aligns with more of a--

Howard Smith: Specifically which disease it is. 

Nada Youssef: Okay, great. That's great information. Thank you. We have Francine: "How is connective tissue disorder different from lupus, and what happens in the long run from having them? Can they be treated, or not?" 

Howard Smith: So connective tissue disease is a broad category that under that category you'd find lupus, rheumatoid arthritis, other autoimmune diseases. It's basically, as I tell my patients, it's like saying I've got a problem with my car. You're going to someone to fix your car, well you've gotta be more specific. So with a broad category, is it a problem with your tires, with your engine? And the same thing with rheumatoid or lupus, they're more specific. So, they all fall under the category of connective tissue disease. We'll need to be more specific so we can diagnose it and then determine what's the appropriate treatment. Because treatment for one autoimmune disease is not the same for others. There's different treatments for rheumatoid, different treatments for lupus. So, one of my goals is to find out exactly which one it is and then get the appropriate treatment for that disease. 

Nada Youssef: And going back to the diet question. Does the diet vary between those diseases? Or what is the optimal diet for autoimmune diseases?

Howard Smith: That, I have personal bias about that. But to be scientific about it, that hasn't been answered. I think that the typical American diet is not probably the best thing, french fries and hamburgers are probably not the really most healthy thing you can eat. I personally think more of a plant based diet is better for the immune system. But we don't have a definitive answer on that and I can't say scientifically that I know for sure that that's the answer. But I think the scientific literature is showing that staying from the typical American diet and going more plant based is probably better you. And Mediterranean type diet. 

Nada Youssef: Alright, and we have Donna: "I have lupus, no one in my family has this. Where did I get it? I'm 65, have had it for about two years now."

Howard Smith: So, most people who develop lupus don't have a first-degree relative with lupus and it just occurs out of the blue, sporadically. People with lupus do have a higher chance of having a first-degree relative, but it's still low. 

Nada Youssef: Okay, let's see here. We have Nancy: "I have RA. I take methyl folic acid, I stopped taking plaquenil. Now they have very few flare ups, do you think stopping plaquenil has anything to do with that? Thank you."

Howard Smith: Well that's an interesting question. So, it sounds like the patient was on Methotrexate and some other medicines to get the disease under control. Probably what happened is, the other medicines finally kicked in and she improved, and then she's stopped the plaquenil because she didn't need it any longer. But it didn't flare her disease. It's probably a consequence that she improved because of the addition of the other medicines. 

Nada Youssef: Interesting, okay, great. We have James: "My daughter has lupus. Is there any successful treatments?"

Howard Smith: Oh, sure. So, most patients with lupus do relatively well. Some of them have day to day rashes and arthritis and things like that, but they lead a relatively normal lifestyle. We have ... new medicines have come out in the last several years for the treatment of lupus, and there are really good treatments of lupus for most patients. It's not what it was in the 1950s, the five year survival of lupus was pretty dismal, it was probably around 50%, and now, survival of patients with lupus is well above 95% for five years and ten years. So we have very effective treatments for patients with lupus.

Nada Youssef: Excellent. Onto Jane: "Can you explain why you get flares with RA, rheumatoid arthritis?" 

Howard Smith: Oh, that's the $60,000 question. Why do people flare? Sometimes it's something in the environment, maybe an infection. Or, maybe physical and emotional stress we know definitely affect the immune system. If you don't get good sleep, that affects the immune system. And sometimes people don't sleep 'cause they're in pain, and if they're in pain they don't sleep. You gotta break that cycle. But overexerting through physical activities, you have to balance to do the right amount. Emotional stress can cause it, environmental stress can cause it. So there are lots of things that can flare episodes of rheumatoid or lupus. For lupus patients, we often know that patients go out in the sun and 6 out of 10 of those patients are sun sensitive. And just going out in the sun can flare up their disease. So there's lots of factors. My job is to help the patient figure out why they have currently flared and if we can, then avoid that. Occasionally, certain medicines can cause flare of disease. So my job is the detective to figure out why a patient is flaring and then--

Nada Youssef: Everybody's different of why they're flaring. Well, Patty's asking: "Can you stop the progression of RA?"

Howard Smith: Oh, that's a good question. With the newer biologic agents, the etanercepts and infliximab and adalimumab and all the tumor necrosis factor inhibitors, they're not cures. We can't cure rheumatoid arthritis. That is, give someone a medicine and stop the medicine and they won't have the disease anymore. But many people, we have stopped the progression of their disease and halted the disease with these agents. There are a lot of new agents now for rheumatoid arthritis in the last 10 years or so, or 15 years. And for many patients, our goal is to get their disease in remission so that they have very few, if any, symptoms. But we don't talk about a cure. Unfortunately, often once they stop their medicine, within a week or two or three weeks, the disease comes back. So patients have to stay on their medicines. But while they're on them, they do relatively well.

Nada Youssef: So none of the autoimmune diseases are curable?

Howard Smith: Not that I can think of, no.

Nada Youssef: Okay. Let's go to Jane: "What can you do to increase your immune system with sjogren's?"

Howard Smith: Sjogren's? 

Nada Youssef: Sure. Thank god I can say it. "Or other diseases."

Howard Smith: What can you do to boost your immune system?

Nada Youssef: Yep.

Howard Smith: Do boost it? Well, okay, exercise is important. It's hard when your joints are bothering you or you don't fell well all over. But exercise helps the immune system, helps people sleep, sleep's important for the immune system. So sleep and exercise, a healthy diet. As I said, this is something we were looking at in lupus patients. And I think diet is key. And medicines and seeing your physician and taking care of yourself in general are the way to go, but these generalized approaches add something, and every little bit is important. So with my lupus patients, avoid the sunlight, simple, or relatively simple, for some people. But I think diet and exercise are key.

Nada Youssef: Great. And I have a question from--

Howard Smith: Let me go back.

Nada Youssef: Yeah.

Howard Smith: The other thing is being compliant with your medicines. I can't tell you how many times patients don't refill their medicines or don't take them appropriately. And when you go to your physician you should have a list of your medicines and how you take them and go over them with your physician, and be honest. If you're not taking them, say you're not taking them because if I think a patient's taking them, and it's "not working" because they're not taking the one I don't know, I might add another medicine and that's not the way to go. If they haven't taken their medicines and they're flaring, okay, let's get that on the course of what we should be doing.

Nada Youssef: So medication, diet, exercise.

Howard Smith: Absolutely. 

Nada Youssef: And sleep.

Howard Smith: Yeah.

Nada Youssef: Sounds good. And then I have Piscine: "I have--"

Howard Smith: Ankylosing spondylitis?

Nada Youssef: Yes. "And should my children have blood tests to see if they hold the marker?"

Howard Smith: Well, that's interesting. So there is a gene that many patients with ankylosing spondylitis have, but the converse is most people who have the gene don't develop ankylosing spondylitis. So, her children may have it, but whether they have it or not is not going to affect whether they develop it or not. It might clue them in as to whether they might get more predisposed to developing if they have the gene, but in general, we don't order that test as a screening test because about 1 in 10, 8-12% of the population has that gene anyway and don't develop the disease. So it's not a screening test. 

Nada Youssef: Okay, so no?

Howard Smith: I'd tell your children to look out for the symptoms of it, and if they develop it, go see their primary care and then maybe a rheumatologist. 

Nada Youssef: Okay, makes sense. Thank you. We have Vicky: "Autoimmune seems so hard to diagnose. If a person is told they have fibromyalgia but white blood count stays elevated, and this person feels like it's lupus but can't seem to pinpoint it. So, what to do?"

Howard Smith: So, I would say that the majority of the patients that I see with lupus and other autoimmune diseases has been going on a while. Some people can tell me, "On July 3rd, I developed my lupus." And other people say, "Over the past year or two, I've developed symptoms." So sometimes the disease itself has an insidious, slow onset. And sometimes, even if somebody has developed it on a certain day, it takes a while to figure it out. We need all the manifestations, all the signs and symptoms to appear, and then the lab tests. I would say on average it takes months or years for patients to get a correct diagnosis for some of these autoimmune conditions. Sometimes if they're fortunate, they have everything that comes together, we can make the diagnosis. But sometimes I'll see patients and say, "You know, I've got an inkling that you have an autoimmune disease." Like I said, with the analogy with the tail. I know there's something going on there but I can't tell you exactly which one it is, that's because we don't have the right lab tests or it takes a while to develop. So, it's a process. It may take several visits to your specialist in autoimmunity to figure it out.

Nada Youssef: And depending on symptoms that you've had, everybody has different symptoms?

Howard Smith: Everybody's different. 

Nada Youssef: Okay. This is difficult. 

Howard Smith: That's the difficulty of it, to try and figure out a disease that you may have a lack of evidence. You may not have all the lab tests, you may not have all the symptoms, and then to figure out and put it together. And the other thing is you don't want to over treat. I don't wanna over treat my patients if they don't have all the symptoms, and I don't wanna if it turns out to be something else. If I give them treatment for A and it turns out to be B, that's not a good thing. So, it's a process, figuring out.

Nada Youssef: Alright, and then we have Vicky: "What's the risk of developing another autoimmune disease for someone with Hashimoto's disease? I was diagnosed as a young teen 50 years ago. Also, my daughter has many hypothyroid symptoms but blood tests show normal function. Is there a test that would be more in-depth?"

Howard Smith: So, going to the first part of it. Lots of patients have multiple autoimmune diseases and as an example, many of my lupus patients have thyroid diseases, and they tend to run in families as I mentioned. I'm gonna leave the part about the thyroid thing to her primary care. There are more tests, there are more blood tests that can be done, more specific blood tests and they can ask them which ones have been done and which ones have not been done.

Nada Youssef: Sure. Great, and then I have Jody: "I am a diabetic, I have acute QTC and wondering how they're related to fibro or if my fibro is affecting them." 

Howard Smith: So, as I mentioned, fibromyalgia is a very common disease, diabetes is a common disease. Of course, what we call Type 1 diabetes is an autoimmune disease as well. So, fibromyalgia is seen in people who have emotional and physical stresses. So the emotional and physical stress of having another autoimmune disease predisposes people to develop fibromyalgia. And people who have lack of sleep, you don't sleep well, you hurt, you might develop fibromyalgia. So a lot of patients who have autoimmune diseases have secondary fibromyalgia, as opposed to primary where they don't have any other disorder associated. So yeah, we see fibromyalgia in autoimmune diseases all the time. 

Nada Youssef: Okay, good to know. And we have Mary-Anne: "What type of testing can you get to see if you have an autoimmune ... testing. Any gene testing?" 

Howard Smith: In general, gene testing isn't done at this point. The way we diagnose is autoimmune diseases is the way we diagnose other diseases. We start with the history of the patient, the patient comes and tells me, "I've had this, that and the other thing." Let's say for lupus, rashes, sun sensitivity, arthritis. So history is the key. So when you go to your physician, go with a list of, these are the problems so you don't forget to say. They'll probably ask you the certain questions but put down your list of questions and your list of symptoms. So history's number one. Physical exam is number two. If I see someone who has a typical butterfly rash, then I'm keyed into that that patient probably has lupus. And then number three is lab tests. So putting all those together is how we diagnose people with autoimmune diseases. It's not any one of those, probably the most important is the history. So its good to go to your physician having it fresh in your mind what it is and when things started and how it progressed.

Nada Youssef: Okay. Good, good. And we have Vadra: "Can you get an autoimmune disease through second degree burns of the skin, even after the skin has healed years ago?"

Howard Smith: So, in general, autoimmune diseases don't develop after trauma. In general, that's key. So I don't think a burn years ago would probably set it off. 

Nada Youssef: Okay. And then we have Elisa: "Is there any new research or treatments for alopecia? Looking for some help." 

Howard Smith: Yeah, so, as I mentioned, so alopecia is hair loss and due to lots of causes, a cause that I'm familiar with is lupus. Many patients, at least 50% of lupus patients have some hair loss at some time. It depends what's causing it. If it's due to an autoimmune condition then we give medications that tend to work better for skin diseases. One of the classic ones is hydroxychloroquine, plaquenil, and that tends to work. There are topical agents that we give patients, topical cortico steroids that we have patients put on their scalp, and that will decrease the inflammation. There are other more advanced medicines, we tailor the medicine depending on how significant the disease is, and always balance the risk and benefit of the meds that we're giving. But there are medications for alopecia, I think the key is to see someone who specializes in that. If it's lupus, your rheumatologist, or dermatologists deal with this all the time.

Nada Youssef: I see, okay. So they could be seeing both rheumatologist and derm?

Howard Smith: My patients tend to see both rheumatology and dermatology.

Nada Youssef: Okay, good to know. And I have Kathy: "Could someone with fibromyalgia go to a certain doctor?"

Howard Smith: So, fibromyalgia is not really autoimmune, but the types of physicians deal with fibromyalgia, some rheumatologists see patients with fibromyalgia. At this point, pain management often treats fibromyalgia. Primary care is probably the place to start. As I said, fibromyalgia is very common. Around 5% of women. So primary care physicians are very familiar with fibromyalgia and I'd start with a primary care doctor. And if they feel that they can't handle it or control it and they've tried certain measures, then they might be referred to either a rheumatologist or a pain management specialist.

Nada Youssef: Okay, and I've read articles about, is fibromyalgia real. Why are people talking about it in that sense, is there a lot of symptoms, is there not enough symptoms?

Howard Smith: So the problem with fibromyalgia is that almost by definition, all the lab tests are normal. So that makes it a little bit difficult ... all available lab tests are normal. There are some research tests showing that there are some abnormalities in people's spinal fluid. So it is a real disease. Some physicians unfortunately don't believe that it's a real disease. But I think the scientific data shows that it is a real disease. And it's difficult to diagnose for many physicians because there aren't a lot of abnormalities. There aren't markers of inflammation, there aren't abnormalities in the blood cells. So it's really on history and physical and response to treatment. So I think basically, the goal for the patient is to see a primary care physician to see if they can get it under control, and then if not, go to a specialist. 

Nada Youssef: Go to a specialist. Okay. And then we have time for one more question here. I have Dawn: "I have, and chicken pox as a child. Should I have a shot for shingles as a prevention?" 

Howard Smith: Yeah. So, in general, depends on what's going on with your disease and what medications they're on with their lupus. So I can't answer that specifically 'cause I don't know what medicines she's on. But she should talk to ... I assume she's probably seeing a rheumatologist with her lupus, and talk about that. But in general, for the ... we don't give the live vaccines to people who are ... that have problems with their immune system, we call them immunocompromised. But people can receive, it's flu season now, all our lupus patients get influenza vaccines. So the typical vaccines can be given that are "dead vaccines." The live viruses are usually not given. And it also depends on what medications the patient is on. So they should talk to their rheumatologist.

Nada Youssef: Talk to your rheumatologist, okay.

Howard Smith: What vaccines they should be getting. 

Nada Youssef: Okay, great. You know what, I will fit in one more, there's a interesting one here from Eva: "Why avoid the sunlight if it helps in the production of vitamin D, which is essential to our health and most of us are deficient of vitamin?"

Howard Smith: Yep. I jokingly tell my patients if you live in this zip code, if you get your lab tests you're vitamin D deficient. So vitamin D is sometimes a hormone, and vitamin D is very important to the immune system. We are actually doing a study right now of vitamin D and the immune system in our lupus patients. So vitamin D is important. Unfortunately, I tell my patients two messages. 6 out of 10 lupus patients are sun sensitive, I tell them don't go out in the sun. And then conversely I tell them, you need a high vitamin D level 'cause it's good for the immune system. So, we usually supplement. Avoid the sun, don't get your vitamin D through sunlight, but get your vitamin D through supplementation. But vitamin D is very important to the immune system.

Nada Youssef: Great, great. Alright, well that's all the time that we have today, but before I let you go anything you want to tell our viewers?

Howard Smith: Well, I think the key is that if you think you have an autoimmune disease, and you've been reading about it, the place to start is with your primary care physician. Let them know what's been going on and they will probably do some preliminary testing and see if they can make the diagnosis, and see if they feel comfortable in treating it. And if they decide that you have lupus or some other autoimmune diseases and they're comfortable with it, they'll treat you. And if not, they'll make the appropriate referral. But I think the key is to start with your primary care physician, 'cause I like to tell my patients they're the quarterback. They run the show, they know about all your other intricacies of everything's going on, and they'll make the appropriate referral.

Nada Youssef: Yeah. And exercise, diet, sleep.

Howard Smith: Exercise and diet I can't stress enough. 

Nada Youssef: Great, well for more health tips and information make sure you follow us on Facebook, Instagram and Snapchat. One word @ClevelandClinic. And next week we'll be with Dr. Cruz, talking breast cancer so make sure you tune in, and thank you so much for watching.