Online Health Chat with Howard Smith, MD
May 24, 2016
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.
Our expert will discuss how both men and women are affected by this disease, the importance of early diagnosis and treatment strategies for mild to severe lupus.
The Lupus Foundation of America Greater Ohio Chapter is the only local force devoted to solving the mystery of lupus, one of the world’s cruelest, most unpredictable and devastating diseases, while giving caring support to those who suffer from its brutal impact. They envision a life free of lupus. Their mission is to improve the quality of life for all people affected by lupus through programs of research, education, support and advocacy. The chapter was founded in 1977 to fulfill the needs of the lupus community in Cleveland. As the years progressed and the organization changed on a national level, more and more of the state was ushered into the chapter's service area. Today, the chapter serves the entire State of Ohio.
About the Speakers
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
gmasciar: My mom was diagnosed with lupus three years ago. Is lupus
Howard_Smith,_MD: Lupus can run in families and has a genetic predisposition. However, the chance of a daughter developing lupus if her mother has it is still quite low. It is probably around five percent or a 1 in 20 chance. (That means there’s a 19 in 20 chance that she will not develop lupus.)
lwolfenbarger: Can you explain as simply as possible the main differences in a less severe case of lupus versus a much more severe case. I have been told by my rheumatologist that I have a more severe case of lupus according to my test results and symptoms. Thank you.
Howard_Smith,_MD: I think an easy way to think of this is to think of a "severe" cold and a "mild" cold. Similarly, some patients with lupus have extensive involvement of the skin, joints with arthritis, heart and lungs or other organ systems, and some have minimal rash and minimal arthritis, etc. There is a gradation from mild disease to severe disease. At times, patient may have one or the other, even both, going on at the same time. As an example, someone may have mild arthritis, but severe kidney problems or vice versa.
aminzerello: Obviously, flare-ups are to be avoided whenever possible, but if they are manageable, does the frequency have a cumulative effect on kidneys or other organs over time?
Howard_Smith,_MD: The cumulative effects depend on whether there is irreversible damage done. As an analogy, you can fall and skin your knee many times, but long term, there may be no damage. However, you may have a severe fall that will leave you with a scar. Similarly, the kidneys, skin, etc. can withstand numerous, relatively minor "insults" and recover. Serious insults to the kidney may leave scars and then impair the ability of the kidney to properly function. This is the same for other organ systems; the key is how bad the insult is.
aminzerello: What dietary restrictions have been proven to make a difference in those with systemic lupus?
Howard_Smith,_MD: There are very few studies on diet in lupus. Overall, I usually recommend a healthy diet with attention to fruits and vegetables.
Jasmine91: What are the best ways to balance daily fatigue, pain, exercise, diet and restful sleep?
Howard_Smith,_MD: These types of problems are common in those with lupus. Treatment needs to be individualized. Every lupus patient needs to figure out what he or she can and can't do in his or her daily life and then make appropriate adjustments. In general, it is hard to argue against eating a healthy diet with fruits and vegetables and avoiding non-nutritious foods. Exercise is helpful, but then again, everyone differs in what they can and can't do. A 70-year-old woman with lupus may not be expected to do what an 18-year-old with lupus can do, but both should not push themselves beyond their limits. Sleep is essential to overall good health and wellbeing. In addition, sleep has important positive effects upon the immune system.
Angelz3: What can you do about disabling fatigue?
Howard_Smith,_MD: Fatigue is often one of the first symptoms that patients have with lupus. Proper diet, exercise and sleep/rest are important along with medication to treat the underlying disease. These approaches need to be individualized.
Jozeycat: As far as treatment, is there a difference in treatment for those who have lupus and/or Sjögren's syndrome?
Howard_Smith,_MD: In general, some of the treatments for arthritis may overlap; however, the treatments for lupus kidney disease differs from those for Sjögren’s.
Many of the treatments for Sjögren’s are for symptoms such as dry eyes and mouth. As you may be aware, the two conditions often overlap, so many patients are on medications that treat both, such as hydroxychloroquine, which is used for dryness in Sjögren’s as well as for arthritis and rash in lupus.
Mymedinfo: Has long-term use of Plaquenil (20 plus years) shown any adverse side effects other than sometimes affecting the eyes?
Howard_Smith,_MD: In general, hydroxychloroquine (Plaquenil) is a relatively safe medicine and usually does not cause eye problems. It tends to prevent complications in those with lupus, and, therefore, we usually recommend its use. Patients may remain on Plaquenil for many years without problems, but at least yearly eye examinations by an ophthalmologist are required.
ssvilar: Is monitoring recommended for someone with a positive Smith antibody, positive SS-A antibody and positive ANA, only Raynaud's and fatigue as symptoms, and UCTD as the diagnosis? Or should medication be considered as a preventive for lupus symptoms?
Howard_Smith,_MD: I routinely monitor patients who have similar problems. They may be more prone to develop symptoms of lupus (such as kidney problems, etc.) Therefore, I suggest routine follow-up with a rheumatologist with physical examinations and laboratory tests. Depending on the specifics, some patients whom I feel have a likely chance of developing lupus are preventively treated with hydroxychloroquine, as it has been shown to prevent the development of symptoms in those with lupus.
crystalclear: When I first started Plaquenil about 10 years ago, my rheumatologist stressed eye exams every six months because it may affect eye health. Your answer to Mymedinfo said Plaquenil doesn't cause eye problems. Has the data changed?
Howard_Smith,_MD: You may have misunderstood. Plaquenil definitely may cause serious eye problems, but it does not commonly do so. To be safe, I recommend at least yearly eye examinations by an ophthalmologist, because the medication initially may not cause symptoms, but symptoms may be detected early on in a routine eye examination.
Lupus724: I am not able to go in the sun. Is that because of the lupus or the medication?
Howard_Smith,_MD: Although occasionally, some people develop problems related to medications upon sun exposure, most often, sun sensitivity is due to the underlying lupus. About 60 percent of patients with lupus are sun sensitive, whereas only a small percentage develops sun sensitivity due to the medications.
Mymedinfo: Are there any studies that have examined the connection between depression and lupus flares? If so, what are the findings?
Howard_Smith,_MD: The best way to think about lupus is that it affects one person, and his or her entire body is connected. Physical and emotional stress can definitely affect the immune system and, thus, affect lupus. It is not uncommon for lupus patents to develop depression as part of their underlying disease, and, of course, depression in the general population is not uncommon. Depression in lupus is overall the same as in those without lupus; however, in those with depression and lupus, as the lupus improves, the depression may also improve. Some patients with lupus have "reactive depression." That is, they become depressed not from the lupus, but because they psychologically become depressed from having this diagnosis. Patients may improve both from treatment of lupus or because they emotionally feel better as a consequence of not having active disease. It is often difficult to distinguish the two. As I said, it is one body, and sorting depression out is often difficult. Nevertheless, depression may be treated similarly in both lupus depression and reactive depression.
aminzerello: I have heard and read many different things about pregnancy and lupus. My rheumatologist says pregnancy will cause you to flare, while my OB says since the immune system is suppressed during pregnancy, it generally gets better during, but flares after delivery. Do you have any thoughts or research to clear this up?
Howard_Smith,_MD: In general, those with active major organ system involvement, such as active kidney disease, heart/lung disease, etc., should not become pregnant. They will not do well (their disease will often flare during pregnancy), and it is less likely that they will have a successful, full-term birth. Therefore, I recommend that such (active disease) patients should not become pregnant. I also recommend that patients have relatively inactive disease for at least six months before becoming pregnant. In addition, those with active or inactive lupus who have certain antibodies in their blood (such as SS-A antibodies) need to be followed by their rheumatologist and probably an obstetrician who deals with high-risk pregnancy. Sometimes, there may be consequences for the development of the fetal heart. So, pregnancy is not absolutely contraindicated in those with lupus; it depends on how active the lupus is.
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 http://my.clevelandclinic.org.
Howard R. Smith, MD
Director, Lupus Clinic
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.
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. To learn more about the Lupus Foundation of America, Inc. Greater Ohio Chapter, visit www.lupusgreaterohio.org and Lupus Foundation of America at www.lupus.org.
Cleveland Clinic Health Information
Learn more about lupus by visiting http://my.clevelandclinic.org/health/diseases_conditions/hic_Systemic_Lupus_Erythematosus
Download a free treatment guide to learn more about forms of lupus, causes and symptoms, risk factors, treatment options and the advantages of receiving care at Cleveland Clinic: http://pages.clevelandclinic.org/lupus-index.html.
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