Online Health Chat with Howard Smith, MD
Tuesday, May 19, 2015 | Noon
It is estimated that at least 1.5 million people in the United States have lupus. While the cause of this mysterious disease is still mostly unknown, much has been discovered about this often debilitating disease.
Systemic lupus erythematosus (lupus) is an autoimmune disease with symptoms and outcomes that can vary greatly, from mild joint and skin problems to life-threatening conditions affecting the heart, kidneys and/or nervous system. Lupus also tends to have periods when it flares and subsides, but these aren’t the same in every patient. Many patients with active lupus feel poorly in general and complain of fever, weight loss and tiredness. Patients with lupus also develop specific problems when the immune system attacks a particular organ(s) or area(s) in the body.
About the Speaker
Howard Smith, MD, is a rheumatologist in the Department of Rheumatic and Immunological Diseases specializing in lupus, arthritis and general rheumatology. Dr. Smith graduated from Boston University School of Medicine and went on to complete an internal medicine residency at VA Boston Medical Center. His rheumatology fellowship was completed at Warren G. Magnuson Clinical Center at the National Institutes of Health.
Let’s Chat About Lupus
Moderator: Welcome to our chat about Lupus with Cleveland Clinic rheumatologist Howard Smith, MD. Thank you, Dr. Smith, for taking the time to be with us to share your expertise and answer our questions.
Let’s get started with our questions.
Looking for Lupus
carl: Are there any symptoms that are noticeable when lupus first develops in a person, but are not unique enough for the person to seek medical help?
Howard_Smith,_MD: Some of the first symptoms that many patients with lupus develop our fatigue, rash and arthritis. The arthritis and fatigue are not specific for lupus; however, the rash is typically a butterfly-shaped rash over the cheeks. Because lupus can involve other organs of the body such as the heart and lungs, symptoms related to those organs are also often not specific. It would be a good idea to first go to a primary care physician to help sort out if these types of symptoms are related to lupus or something else.
carl: When a butterfly-shaped rash appears, is it always on the cheeks or can it be on other areas of the body? Also, will the rash go away on its own or does it stay for a lengthy period without treatment?
Howard_Smith,_MD: The classic type of rash in a patient with lupus is the butterfly-shaped rash that occurs on the cheeks and goes over the nose. Rashes in lupus can appear anywhere on the body, as well as inside the nose and mouth. Rashes in lupus patients may come and go. Often they appear upon sun exposure. For more aggressive lesions and those that do not go away on their own, we start treatment with medication such as hydroxychloroquine, topical corticosteroids and, if necessary, immunosuppressive medication.
bagpiper2000: What would be the first signs of lupus attacking an organ if you have been on Plaquenil® for some time.
Howard_Smith,_MD: Because each individual organ has its own unique signs and symptoms, it would be hard to generalize. For example, if the heart was involved, there may be chest pain or shortness of breath. If the kidneys were involved, there may be swelling around the lower extremities and ankles. If the brain was involved, there may be seizures, depression or difficulties with thinking and remembering. Hydroxychloroquine, Plaquenil, helps to prevent complications in lupus patients but it is not perfect. Patients on hydroxychloroquine can go on to develop complications in other organs. I would suggest that if you feel something doesn't feel right that you should contact your primary care physician or your rheumatologist to look into the problem further.
softballmom: Can you have lupus even if you don't have any rashes?
Howard_Smith,_MD: Only seven or eight out of 10 patients with lupus have rashes. Therefore, we definitely see patients who have lupus and never have rashes.
Midlandmi: Most men think the lupus diagnosis is only for women. Are there special tests for men to see if they have lupus?
Howard_Smith,_MD: There is a 9-1 increased incidence of lupus in women. Therefore approximate 10 percent of patients with lupus are men. The testing for men with lupus is virtually the same as for women with lupus.
Potential and Progression
jabra123: If a patient has a positive ANA test (1:160 speckled), but all other tests are negative and there are no symptoms of clinical significance, what is the likelihood the patient will develop lupus at some point in the future?
Howard_Smith,_MD: A positive ANA may be seen in approximately one out of 20 healthy people. Lupus is a lot less common than that; it occurs in approximately one in 250 African-American women and about one in 400 white women. Therefore, most people who have a positive ANA do not have lupus and also will not develop lupus. So as a rough estimate, about one in 20 people with a positive ANA may go on to develop lupus; or, put another way, 19 out of 20 people with a positive ANA will not develop lupus.
softballmom: I heard lupus was hereditary. If my aunt has lupus and fibromyalgia but neither my mother nor I have it, can my children still get it?
Howard_Smith,_MD: Lupus and associated autoimmune diseases tend to run in families. There is a genetic basis for lupus. Nevertheless, most relatives of patients with lupus do not go on to develop the disease. The chance of not developing lupus in a first-degree relative is approximately 95 percent.
internetkat01: If a lupus patient has SLE and it primarily affects your joints, does that mean it will never affect your organs?
Howard_Smith,_MD: Lupus is often a progressive disease. It may initially involve just the skin with a rash and then progress to involve the joints. From there it may go on to develop problems in other organs such as lung or kidneys. In general, after a few years, it tends to remain stable and affect just the organs involved. But occasionally, people do go on to develop new signs and symptoms of their lupus involving other organs.
Hairdresser: I have been diagnosed with Sjogren's syndrome. How does it differ from lupus in severity, and does it advance on the same timetable as lupus?
Howard_Smith,_MD: Lupus and Sjogren’s syndrome are both autoimmune diseases, that is, the body is attacking itself. They are distinct, separate diseases; however, many patients have both of them at the same time. It's hard to generalize about severity. There are patients who have mild or severe lupus and, similarly, there are patients who have mild or severe Sjogren’s syndrome. In patients who have lupus and Sjogren's syndrome at the same time, they each may develop or progress at the front rates. In general, we use similar medications to treat both of those diseases.
bagpiper2000: I realize everyone is different, but in general would you say there is any type of progressive time line for lupus to (as you say progress). I started taking Plaquenil five years ago and have not had any further problems. I maintain a healthy weight and am relatively active. I experience some fatigue, but that is normal in everyone I suspect. I'm taking 400 mg day.
Howard_Smith,_MD: Lupus is often variable. That is, some people present with multiple organ involvement of the kidneys, skin, joints and heart, and other people have a very slow progressive course that may take years for them to develop signs and symptoms. Others never progress beyond having only rashes and arthritis. Therefore, it's hard to generalize. Usually, most people develop their signs and symptoms within the first several years, but some people develop problems many years after their first lupus symptom.
DebN : Thank for you doing this webchat. I have lupus anticoagulant syndrome and I know it is not lupus that I have but I was wondering if you knew any percentages of people who have lupus and also lupus anticoagulant syndrome? Are there any links between the two as to the symptoms both groups have? Any other insightful information would be appreciated. Thank you for your responses.
Howard_Smith,_MD: About one out of 10 patients with lupus have the antiphospholipid syndrome. They are two separate diseases. Some people have only lupus while others have only the antiphospholipid syndrome, and then others have both. Both of them are autoimmune diseases, and that is the way that they are linked. The symptoms of antiphospholipid syndrome, in general, include an increased tendency to form blood clots especially in the legs, lungs and brain. In addition, pregnant women who have the antiphospholipid syndrome often have a history of multiple miscarriages because of blood clots that go to the placenta.
Diet and Nutrition
jabra123: Can lupus symptoms be managed with diet?
Howard_Smith,_MD: Diet plays a role in helping to manage lupus. Diet is important in keeping blood pressure under control, in keeping complications of heart disease from developing and, possibly, in helping with those patients who have lupus kidney disease. Although I believe diet is very important, especially to decrease foods that are pro-inflammatory, treatment by diet alone would not be sufficient. Just like any other type of diseases, medications, lifestyle changes, diet and exercise are important in managing the disease. I strongly recommend that my patients eat a healthy diet consisting of vegetables and fruits and avoiding fatty foods.
loveall4jc: Can a vegan diet cause lupus patient to go into remission?
Howard_Smith,_MD: The scientific evidence on the role of diet in autoimmune diseases such as lupus is just becoming available. I am a believer that a plant-based diet is helpful in promoting overall health and decreasing the chemicals that cause inflammation. I advocate a plant-based diet along with a very low-fat diet. You have to recall that French fries are vegan but they are not exactly healthy. I think that exercise and healthy diet are extremely important for everyone, but more so for those with autoimmune diseases.
Bhealthchat: What do you see as the most common side effects in patients taking hydroxychloroquine to treat lupus?
Howard_Smith,_MD: hydroxychloroquine is a very safe medicine. Probably the most common side effect is a relatively minor one and that would be some nausea or GI upset from the medication. Occasionally, people on hydroxychloroquine can develop rashes. The most serious side effect, of course, relates to problems with the eyes, and that is a very rare event. Serious problems can be detected early (and avoided) by routine eye examination by an ophthalmologist.
Maygirl21: Is hydrochlorothiazide, 12.5 mg, taken for blood pressure control a hazard for a patient with lupus?
Howard_Smith,_MD: Control of blood pressure is very important to help prevent kidney damage and other end organ damage such as that to the heart and brain in patients with lupus and high blood pressure. In general, hydrochlorothiazide is not contraindicated in lupus patients.
Midlandmi: Why do African American women who are taking prednisone gain so much weight?
Howard_Smith,_MD: I'm not aware that there is any racial predisposition to gaining weight. I think it has to do with each individual's underlying metabolic makeup and their increase in appetite that may be caused by prednisone. I see patients of all types of backgrounds who do not gain weight on prednisone, and, likewise, I see all types of patients who do gain weight on prednisone. It also depends on an individual's daily activity and how many calories they are burning as well as their food intake. For those who do develop an increased appetite on prednisone, I strongly advised that they eat low calorie-containing foods such as vegetables.
Maygirl21: I heard on a webcast recently that sulfa drugs should be avoided in lupus patients. What are your thoughts?
Howard_Smith,_MD: Patients with lupus have an increased chance of developing problems on sulfa or sulfonamide medications. Sometimes, those on antibiotics such as Bactrim® can develop flares of their lupus, including rash and arthritis. It depends on how often the medication is taken and for how long. Even knowing that potential complication, for those to take significant immunosuppressive medications such as mycophenolate or CellCept®, they are often treated with Bactrim to prevent subsequent infections. Therefore, there is not an absolute contraindication to using sulfa or sulfonamide medications in those with lupus. Treatment is individualized.
lfa: Does Plaquenil cause hair loss, thinning or drying out? I have been losing a great deal of hair recently. I do have Hashimoto's but I am on Synthroid and have been for years. How is thyroid disease related to lupus if at all?
Howard_Smith,_MD: Many patients with lupus have hair loss, also known as alopecia. One of the first medications used to treat that problem is hydroxychloroquine or Plaquenil. Although hydroxychloroquine can cause hair loss, it is rather unusual. In general, when my patients are on hydroxychloroquine and have new-onset hair loss, we often search for other causes before we ascribe the hair loss to hydroxychloroquine. As you mentioned, one of the other causes for hair loss is thyroid disease. Patients with lupus have an increased incidence of having thyroid disorders.
Everyday Life With Lupus
Bhealthchat: Does lupus or the treatment of it (i.e., medication) affect sex drive?
Howard_Smith,_MD: All serious diseases such as lupus can affect overall well-being. That would include fatigue, psychological problems such as depression, and associated sex drive. In general, when people don't feel well, their sex drive decreases. Similarly, medication such as corticosteroids like prednisone can make people not feel as well as they normally do and impact upon their usual daily activities, including their sex drive.
pilatesgirl: Are there any special lifestyle steps that assist in protecting someone with lupus from advancing disease or at least mitigating it? Do you think celiac disease, or any particular immune upsets, might influence lupus? I have heard people with celiac disease are more prone to lupus.
Howard_Smith,_MD: Lifestyle activities that promote health such as exercising, maintaining ideal body weight and eating a healthy diet are important in patients with lupus. We are early in our understanding of the role of diet in lupus, but diets that are high in vegetables and fruits and low in meat and fatty foods probably are beneficial. In general, activities that promote overall good health such as appropriate amounts of sleep, exercise and healthy social interactions are recommended for those with lupus. Celiac disease, like lupus, is an autoimmune disease. There can be coexistence of celiac disease in those with lupus, but in general they are two separate diseases that may occur together by chance. Lupus patients only have a very slight increased chance of developing celiac disease.
internetkat01: Is lupus considered a disability if a person has not filed for disability. I recently applied for a new job and on the application it listed a list of disabilities. Lupus was not on there so I said I had no disabilities. Was that an untrue statement?
Howard_Smith,_MD: Disability and disability determinations are more of a legal definition as opposed to a medical definition. Some patients with lupus are unable to perform their activities of daily living, including gainful employment, while others maintain a full active lifestyle. Each individual would have to determine what they could or could not do and whether they consider themselves disabled or not.
Concerns and Complications
JP4808: I am being referred to a vascular surgeon for phlebitis on my inner thigh. Does lupus present any additional concerns in this instance?
Howard_Smith,_MD: Some patients with lupus develop a syndrome called the antiphospholipid syndrome. These patients are predisposed to developing blood clots such as those in the legs known as deep venous thrombosis, or those in the lungs known as pulmonary embolism, or those in the brain that would be a stroke. Other patients with antiphospholipid syndrome develop multiple miscarriages during pregnancy because of blood clots that go to the placenta. Most lupus patients who have blood clotting issues should be tested for the presence of the antiphospholipid syndrome. If a patient does have that syndrome, then specific treatment is needed to prevent further blood clots.
bagpiper2000: Other than staying out of the sun, what can be used to help with preventing or deferring skin problems. I am fair skinned and use Aveeno®, but not often enough.
Howard_Smith,_MD: About six out of 10 patients with lupus are sun sensitive. Avoiding the sun is extremely important, as it can cause not only skin rashes but also can cause flare ups of the underlying disease with arthritis, fatigue and other organ system involvement. I recommend those who are sun sensitive to avoid the sun between 10 a.m. and 3 p.m. They should also use high SPF sunscreen, wear clothing that protects their skin from sunlight, wear wide-brimmed hats and use medications. Medication such as hydroxychloroquine can help prevent and treat skin problems. Topical applications of corticosteroids can treat active skin lesions. For very aggressive skin rashes, sometimes we add immunosuppressive medications such as methotrexate, azathioprine or mycophenolate.
JaneAusten: Does the Cleveland Clinic Lupus Clinic address central nervous system (CNS) issues? I am very concerned about decades of prescriptions for Ambien® CR 12.5 and Xanax for sleep and anxiety. I read that both of these are Alzheimer's triggers. I stopped taking both about two months ago and have had no apparent effects, but I'm concerned about my brain.
Howard_Smith,_MD: Many patients who have lupus have involvement of their central nervous system. Patients with lupus can have involvement of their brain, and that may cause seizures, psychological problems such as anxiety or depression, or difficulty with thinking. We fully evaluate central nervous system and brain issues in patients with lupus at the Lupus Clinic at Cleveland Clinic.
DustyShadow: Is it SLE or the medications that cause excessive sweating everywhere on the body? My scalp sweats so much that it drips down my face. This happens any time the temperature is warm. The sun does not need to be present.
Howard_Smith,_MD: In general, excessive sweating is not commonly seen in lupus patients. Medications can cause excessive sweating. Other diseases, such as endocrine diseases are related to excessive sweating. It would be important to check with your rheumatologist or an endocrinologist to see if a cause for excessive sweating can be determined.
DustyShadow: Is "thin basement membrane nephritis" common in patients with lupus?
Howard_Smith,_MD: Approximately half of patients with lupus have involvement of their kidneys. The basement membrane is part of the kidney that helps it perform its function of filtering the blood. Many, but not all, patients with kidney involvement with lupus have disease that affects the basement membrane. The definitive way of determining if the kidney and basement membrane are involved is by IV kidney biopsy. A rheumatologist or nephrologist who deals with lupus of the kidney would be able to help determine if the basement membrane is affected.
Contessa: Does QT prolongation go along with having lupus? Is it a precursor to other heart problems, and what would they be?
Howard_Smith,_MD: There are numerous causes of QT prolongation. Some of the causes involve medication or atherosclerosis. Lupus also could be the cause. QT prolongation may, at times, be serious, but at other times may not be. The QT interval is a time for certain activities of the heart to occur. If it becomes excessively prolonged, problems such as irregular heartbeats can develop. Irregular heartbeats can lead to poor pumping of blood from the heart, and that, of course, can affect other organs such as the brain.
scott44: I had lupus many years ago STL. Then on June 1, 2014, I had a SCA. Now, since about January of this year, my blood pressure drops when sitting and walking. My doctors told me I have orthostatic hypotension and or autonomic neuropathy. I think being dead my body is resetting itself. But with the lupus in remission, I think that it is messing up autonomic functions. I have been lightheaded/dizzy for five months nonstop now, and my legs are starting to hurt. I am on cardiac medications from a heart attack on September 28, 2014. I have yet to return to work, and it is getting hard to pay for things. Social security says I do not qualify. Anyway, I feel it is the medications or the lupus returning in a new way. They switched the medications for a week, but I feel like just stopping everything. If I die again, so be it. It has to be a better way to live than with your head spinning and hard to think.
Howard_Smith,_MD: Lupus can affect the autonomic nervous system. The autonomic nervous system can control blood pressure and other functions of the body. In the Lupus Clinic, we often refer our patients to a neurologist, those who directly deal with problems of the autonomic nervous system. There are multiple causes for having orthostatic hypotension, even simple ones such as dehydration. I suggest a thorough evaluation by rheumatology and neurology to figure out the cause and treatment of your problems.
JaneAusten: I am a 61-year-old female diagnosed with SLE in 1993 at Ohio State University and again at Cleveland Clinic. There is central nervous system involvement. My optometrist diagnosed histoplasmosis in both eyes (it was never diagnosed in the lungs) after a dilated eye exam, but said there is no treatment available. Neither I nor my specialists are familiar with histoplasmosis in the eyes (have never heard of it), but think there must be something to prevent damage. Do you have any comments and recommendations?
Moderator: Ocular histoplasmosis is not associated with SLE according to our retina specialists in the Cole Eye Institute. Ocular histoplasmosis can be treated with laser procedures to prevent further damage or blindness if the leaky vessels are not in the center of the retina. If they are, anti-VEGF injections allow better outcomes. Any of the Cleveland Clinic retina doctors would be happy to see you for an opinion. You may contact Cole Eye retina specialist by calling 216.444.2020 (or toll-free 800.223.2273, ext. 42020).
BJM: Are there any DEDICATED lupus doctors at Cleveland Clinic, i.e., those that SPECIALIZE in its treatment? My relative has not been able to find one who can hone in on what is wrong with her, and as a consequence, her situation has been more "down" than up.
Howard_Smith,_MD: Recently, Cleveland Clinic has opened the Lupus Clinic. It is dedicated exclusively to treating patients who have lupus. We have physicians who specialize in the treatment of patients who have arthritis, skin diseases and kidney diseases. Appointments may be made by 216.444.5632.
Lupus Treatment Guide
Moderator: That is all the time we have for questions today. Thank you, Dr. Smith, for taking time to educate us about lupus.
On behalf of Cleveland Clinic, we want to thank you for attending our online health chat. We hope you found it to be helpful and informative. If you would like to learn more about the benefits of choosing Cleveland Clinic for your health concerns, please visit us online at my.clevelandclinic.org.
Howard_Smith,_MD: Thank you very much for submitting these very interesting questions on lupus. It was my pleasure to be able to address your questions and concerns. For those of you who have further questions or seek an opinion regarding your lupus or possible lupus, we can be reached at the Lupus Clinic at Cleveland Clinic. Appointments may be made at 216.444.5632.
To make an appointment with Dr. Smith or any of the other specialists in our Department of Rheumatic & Immunological Diseases at Cleveland Clinic, please call 866.275.7496. You can also visit us online at clevelandclinic.org/rheum.
To learn more about the Lupus Foundation of America, Inc. Greater Ohio Chapter, visit the website at www.lupusgreaterohio.org.
For More Information
Cleveland Clinic’s Rheumatology Program specializes in the evaluation and treatment of conditions, including lupus, that affect the bones, muscles, joints and skin. Using state-of-the-art diagnostics, we evaluate the cause of your pain and then tailor the most appropriate treatment for your individual needs. Our rheumatologists are leaders in research and treatment of rheumatic diseases. Cleveland Clinic’s Department of Rheumatic and Immunological Diseases is ranked second in the nation by U.S. News & World Report.
Lupus Foundation of America
This health chat is being brought to you by Cleveland Clinic and Lupus Foundation of America, Inc. Greater Ohio Chapter. The Greater Ohio Chapter of the Lupus Foundation of America, Inc., founded in 1977, is a non-profit, mostly voluntary health organization. Its purposes are to raise public awareness, educate and support those affected by lupus and find a cure, educate health care professionals, and promote, encourage and provide funds for Lupus research.
Cleveland Clinic Health Information
Learn more about symptoms, causes, diagnostic tests and treatments for lupus:
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