May 7, 2014
Lupus is a mysterious disease. The cause is unknown and efforts to identify the etiology have been the focus of major research efforts for years. One in 2,000 people in the United States has lupus. People of African, Asian and Native American descent are more likely to develop lupus than Caucasians. Our expert will discuss how both men and women are affected by this disease and will address symptoms, diagnosis and treatment strategies for mild to severe lupus.
Systemic lupus erythematosus (lupus) is a disease of the immune system. Normally, the immune system protects the body from infection. However, in lupus, the immune system inappropriately attacks tissues in various parts of the body. This abnormal activity of the immune system leads to tissue damage and illness.
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. Because lupus is a condition that can change over time and is not always predictable, a critical part of good care includes periodic visits with a knowledgeable, available physician.
About the Speaker
Mehrnaz Hojjati, MD is an associate staff physician in the Department of Rheumatic and Immunological Diseases, specializing in lupus and general rheumatology. She is board certified in rheumatology and internal medicine. Dr. Hojjati completed her rheumatology fellowship at Yale-New Haven Hospital, in New Haven, Conn. She completed her internal medicine residency at both St. Raphael Hospital, in New Haven, Conn., and Prince George's Hospital Center, in Cheverly, Md. Dr. Hojiati graduated from Shahid Beheshti University of Medical Science, in Tehran.
Let’s Chat About Lupus Answers
pilatesgirl: How do lupus symptoms tend to develop as one ages? Are there different treatments in those over 60 years old?
Mehrnaz_Hojjati,_MD: Lupus is generally more severe when it is present in younger ages, from 16 to 30 years old. The second peak that we see is lupus in women about 50 years old. However, the good news is that it is usually mild at this age. Having said that, I have had patients with late onset lupus at their 60s that did have severe disease manifestations with nervous system and kidney involvement. Generally, lupus in elderly affects the skin the joints and maybe the lungs. The treatment is similar for all ages.
pilatesgirl: Might you talk about lupus that affects the skin and feet more than other organs?
Mehrnaz_Hojjati,_MD: Lupus is a systemic immune disease and has a spectrum from mild to severe. If it is mild, it usually affects the skin and or the joints. It can further evolve and affect other organs (i.e., kidneys, bone marrow, lungs and brain).
firebird: Can there be a connection between lupus and painful bladder syndrome? If so, what is the best way to manage it?
Mehrnaz_Hojjati,_MD: It is true that interstitial cystitis (painful bladder syndrome) is more common in some patients with lupus and Sjögren disease. The treatment, however, is the same if you don't have lupus. Immune suppressive therapies have not been proven to help this syndrome.
cloughc: I have had conjunctivitis a few times in the last few months. I wash and sanitize my hands regularly. I am thinking it may be something besides pink eye and maybe related to my systemic lupus erythematosus. How does lupus affect the eye, and could these be some type of infection related to lupus?
Mehrnaz_Hojjati,_MD: Sure, lupus can affect the eye but more common would be infections (mostly viral) due to your compromised immune system and the medications you are on for your lupus. Have you seen your eye doctor? You should. And if this is a recurring problem lasting more than two or three days, you should definitely see your rheumatologist.
msoulds: Is having respiratory issues and lupus common? I suffer from chronic sinus infections and it drains into my chest or ears. Since I am severely overweight, I really don't like going on steroids unless I have to. Many times ordinary antibiotics do not work and, if it does, only for about two weeks. Can you make any suggestions?
Mehrnaz_Hojjati,_MD: Lupus can affect the lungs. However, chronic or recurrent sinusitis or upper respiratory infection can have two explanations in people with lupus. The first is their immune compromised status related to the lupus medications. The second is having a primary immune deficiency along with lupus. You may want to see an allergist/immunologist if this is a recurrent issue to evaluate you for primary immune deficiency.
Capw: Can a white plaque-like lesion on the side of the tongue be attributed to systemic lupus erythematosus? I am currently awaiting results of a biopsy.
Mehrnaz_Hojjati,_MD: Yes, but the biopsy is absolutely necessary.
lester095: I have had discoid lupus for about 15 years and just recently was given the diagnosis of systemic lupus. Is there any information that will help me, since I am also male? Most of what I see is dealing with females.
Mehrnaz_Hojjati,_MD: Yes, you need to know more about potential symptoms that you may or may not develop which are related to systemic lupus. I would suggest you contact the Lupus Foundation of Ohio Cleveland Chapter (and visit their website at www.lupusgreaterohio.org) and also go to the website of the Lupus Foundation of America (www.lupus.org). You can find helpful clinical pearls on this that will help you to be proactive if you develop any of those symptoms and prevent disease flare.
lester095: If I have lupus, as a male, is there an increased chance of my daughters also being diagnosed with lupus?
Mehrnaz_Hojjati,_MD: Yes. Lupus is a genetic disease, so there is a small chance for your daughters to inherit the gene from you. However, I do not recommend testing for lupus in them unless they have any clinical symptoms. They should be mindful that you have lupus and seek appropriate care if they develop any clinical symptoms concerning for lupus (skin rash that does not go away, joint swelling, etc.).
lucylou14: My son has immune thyroid issues now and lupus-like symptoms. Where can he get information on this?
Mehrnaz_Hojjati,_MD: You will need to see a rheumatologist to make sure he doesn't have lupus along with the autoimmune thyroid disease. You can also check the Lupus Foundation of America website (www.lupus.org).
msoulds: I have systemic lupus erythematosus and fibromyalgia. I am in constant pain and suffer from swelling in my ankles and the top of my feet. My doctor has been trying a new medications to help, but we have had no luck. Do you have any suggestions?
Mehrnaz_Hojjati,_MD: The first question is what is the source of your pain. Is it due to inflammation or due to your fibromyalgia (which is usually the case)? Fibromyalgia—as you may know—is a chronic pain condition with a complex cause. So, the treatment is difficult and mostly ineffective. We usually try to address the triggers (poor sleep, depressed mood, low physical activity and chronic stressors) of this, and that can be very helpful. You may also benefit from visiting the Fibromyalgia Clinic in Cleveland Clinic’s Department of Rheumatology.
msoulds: I would definitely like to have that information about the fibromyalgia clinic at Cleveland Clinic. I have tried the chronic pain clinic there. Cleveland Clinic, various physical therapy and occupational therapy treatments did help me out. However, I didn't feel as if the groups helped me since I had no issues with being depressed or had substance abuse problems. I will contact my doctor about the clinic though.
Capw: How do I differentiate between a lupus flair, rheumatoid flair or fibromyalgia? (I have all three.)
Mehrnaz_Hojjati,_MD: That is why you should see your rheumatologist! The reason I say this is because this may be even puzzling for your rheumatologist. But in a nutshell, if you have only pain and fatigue that is your fibromyalgia (most likely). If you have other symptoms (i.e., skin rash and neurologic symptoms that don't go away), that may be your lupus.
writer53: With autoimmune disease disproportionately occurring in women (75%) and on the rise—especially in adolescent girls and young women—can you discuss the connection between hormones and immunity, and the implications for hormonal imbalance (estrogen dominance, progesterone deficiency) to predispose women (particularly young women) to developing autoimmune disease?
Mehrnaz_Hojjati,_MD: We know that high estrogen states can predispose people if they have the right genetic background to develop autoimmune diseases like lupus. However, having said that, this is a matter of debate for immunologists whether a hormonal imbalance itself can cause lupus. There is increasing research done on this subject, but just to summarize we know lupus is a multifactorial (many causes) and genetic disease. One factor by itself in the absence of other triggers should not cause autoimmune conditions or lupus.
cmack216: I have noticed my pulse rate in my neck area will beat fast from time-to-time. Could this be one early sign of lupus?
Mehrnaz_Hojjati,_MD: No, but you should get that checked. It may be your heart.
Kidney Conditions with Lupus
sanddollargirl: I have lupus and Sjögren disease. I am starting to have some kidney trouble. The right kidney isn’t working properly now. When should I see a kidney doctor?
Mehrnaz_Hojjati,_MD: As soon as possible. If the kidney issue is indeed related to your lupus, this will need immediate action to prevent long-term irreversible damage due to inflammation. There are other factors that can also cause kidney disease in people with lupus. You should see a specialist as soon as possible.
Fertility and Pregnancy with Lupus
HeyArnold: Does lupus affect fertility in women?
Mehrnaz_Hojjati,_MD: The disease itself should not. However the medications used for treatment (immune suppressants)—specifically cyclophosphamide, may affect fertility.
DXG: What are the risks with pregnancy and lupus? Also, what are the risks with taking Plaquenil® (hydroxychloroquine) during pregnancy or if you are trying to get pregnant?
Mehrnaz_Hojjati,_MD: Any high estrogen state including pregnancy can potentially increase lupus disease activity and result in more frequent flares. I do strongly recommend my patients with lupus to stay on Plaquenil® during their pregnancy. It is the safest among other treatments and may prevent flares. The most important thing that should be taken in consideration when planning for conception is to ensure the lupus disease activity is in its minimal stage. In other words, there are no signs of inflammation clinically or serologically close to the time of conception. This indeed will significantly reduce the chances of having lupus flares during pregnancy or any related complications.
Diagnostic Tests and Results
Yolandalmeyda: What are the inflammatory markers in the blood test? What is a good range?
Mehrnaz_Hojjati,_MD: The range depends on the laboratory that it is being tested. The two common markers that we use are the sedimentation rate (ESR) and C-reactive protein (CRP).
gatorfrog: I have not been diagnosed with lupus, but I have the following symptoms: extreme fatigue, painful and swollen joints, anemia, swelling, hair loss and sun sensitivity (intense headache). My ANA is always high, but they say that I don't have lupus. Should I request further testing and what tests would those be? I would really love some answers and I have moved to a new state with new doctors and hope to get some kind of answer.
Mehrnaz_Hojjati,_MD: Positive ANA (antinuclear antibody) by itself does not imply diagnosis of lupus. In fact, 15 to 30 percent of either healthy population or with other chronic and/or autoimmune conditions can have a positive ANA. The distinction between clinical lupus and fibromyalgia (which is certainly more common) requires an experienced rheumatologist.
hooperd: Beside the routine blood work for lupus what other tests can be ordered if your test is showing normal? I have several patients who test normal but then later test positive. I have the exact same experience, but I can't prove I have lupus. I was wondering what other test I could request the doctor to order?
Mehrnaz_Hojjati,_MD: Aside from the ANA if there is high clinical suspicion for lupus, you can ask to have the ENA (extractable nuclear antigens), dsDNA antibody to be checked.
kwright1204: When the doctor tells you about the inflammation levels they are seeing in your blood tests, does that directly relate to how much joint pain you may have? (I don't know everything they are looking at.) Sometimes they tell me that my levels are only slightly elevated, and I think they are inferring that I shouldn't be in as much pain as I've described to them.
Mehrnaz_Hojjati,_MD: Not necessarily. Pain perception is different in different people. Although we do use inflammatory markers as nominators of how much inflammation there is, these markers cannot be reliable enough to reflect your pain level.
BSUgrad: I am a 64-year-old female who was diagnosed with systemic lupus in 1973. For the first 20 years I maintained the disease with a treatment of prednisone, mostly alternate-day therapy. When my internist retired, I was treated by a rheumatologist who prescribed Plaquenil® (hydroxychloroquine). Now, another 20 years later, my ophthalmologist is concerned by changes in my retina and has requested that I stop the Plaquenil®. Now my new rheumatologist and I are trying to figure out a safe alternative. I did so well on the prednisone for so many years and just wonder if that might be a solution. I have been diagnosed with osteoporosis and realize that the years of prednisone might have been the culprit. All of the side effects of the various choices are pretty overwhelming. Do you have any comment?
Mehrnaz_Hojjati,_MD: If there is retinal changes that your ophthalmologist thinks is due to the Plaquenil® you should definitely stop taking it. If you still have any symptoms related to your lupus, prednisone (ideally short-term) is a good quick solution, but I do not recommend it long term (specifically since you already have osteoporosis. There are other immune suppressant medications (methotrexate and Benlysta® [belimumab]) that you can discuss with your rheumatologist if you have active lupus disease.
Yolandalmeyda: I tried Benlysta® (belimumab) treatment for two years. I had to stop taking it because I did not respond well with the treatment. Now I just started taking methotrexate, but I am not sure what side effects I should be more aware of?
Mehrnaz_Hojjati,_MD: Methotrexate is one of the most traditional treatments that has been available for over 50 years. The main side effect that we as rheumatologists are concerned with is the potential for liver toxicity. (It is rare, but has been reported with higher dose and longer use.) You definitely need routine blood work for that. More common side effects would be GI-related (gastrointestinal-related), including nausea, vomiting, abdominal cramps and mouth sores.
occam27: My wife has systemic lupus erythematosus, fibromyalgia and pulmonary arterial hypertension (PAH). What would be your treatment options?
Mehrnaz_Hojjati,_MD: If the pulmonary arterial hypertension is secondary to lupus medications like Viagra® (sildenafil) and Tracleer® (bosentan) are reasonable treatments for PAH. However, I would recommend she sees a pulmonologist who has expertise in chronic lung diseases related to lupus and connective tissue disease.
Treatment for Lupus Lung Syndrome
lucylou14: I have been kept in remission with prednisone 7 mg for many years. I am concerned about biologics. Can you discuss those? I have lupus lung syndrome.
Mehrnaz_Hojjati,_MD: I'm not sure what exactly your question is. Are you on a biologic? Chronic steroids do have multiple side effects. However, depending on what treatments you have tried for lupus lung syndrome, a low-dose steroid may be the only way to keep you in remission.
lucylou14: I have not tried biologics. I have tried and had an allergic reaction to Plaquenil® (hydroxychloroquine). My reaction to Cytoxan® (cyclophosphamide) was severe. Imuran® (azathioprine) produced drug-induced hepatitis in me. Hence, I remain well on prednisone, but I am curious about Benlysta® (belimumab).
Mehrnaz_Hojjati,_MD: Benlysta®, as you may know, is the newest on the market. Depending on what your lupus symptoms are at the present time, it may actually be a very reasonable treatment for you to help your symptoms, but also get you off of the steroids.
Medication Costs and Affordable Care Act
kwright1204: I have been told that I do not qualify for any financial assistance for the use of Benlysta® (belimumab), which makes the drug too expensive for me (even though apparently we make too much money to get help). I am currently in the clinical trial for the injectable, which has worked wonders for me. Is there any movement toward making Benlysta® more affordable for those that have insurance and don't qualify for financial assistance?
Mehrnaz_Hojjati,_MD: Have you contacted the company itself? They sometimes offer assistance for compassionate use. (Your rheumatologist may need to ask for that.) Unfortunately, I am not aware of any plans for cutting costs on this medication, but would hope with the Affordable Care Act you should be able to get an insurance that covers some.
Surgery in Lupus Patients
cloughc: What are your thoughts on weight loss surgery, specifically sleeve gastrectomy, in lupus patients? I am having it done August 6. My mother is worried it will flare my lupus.
Mehrnaz_Hojjati,_MD: Weight loss will help your autoimmune disease and its complications. However, it is true that any surgery can result in a lupus flare. So make sure your rheumatologist is aware and you see her periodically after the surgery. If you have tried other weight-loss methods and if you have a BMI over 40, surgery is usually effective.
Nutrition and Lupus
jriley2250: What diet is best for patients with lupus?
Mehrnaz_Hojjati,_MD: The best diet would be a Mediterranean diet, which has shown to have modest anti-inflammatory effects. This is a diet high in vegetables and fruits, nuts, moderate white meat and minimal red meat. A gluten-free diet is also good.
Sandykon: I recently read a book suggesting that a vegan diet will minimize or completely neutralize the symptoms of lupus. What is your medical opinion on this concept?
Mehrnaz_Hojjati,_MD: You won't go wrong by a vegan diet. A diet low in animal fat does have modest anti-inflammatory benefit. Yet, please do not expect a lot from a diet. The effect as I mentioned is modest.
Yolandalmeyda: I have had lupus for 22 years and I lost my spleen. I have pancreatitis and in February I lost part of my intestines, 36 cm of my thick intestine and 12 cm of my thin intestine. Since my immune system is compromised, should I watch my food intake? What do you recommend as a good diet?
Mehrnaz_Hojjati,_MD: It is best is to consult with a nutritionist specifically for your pancreatitis, since you will need to be on a special diet.
Supplements and Alternative Therapy
Laketime1966: Are there any alternative medications or actions that can be taken to aid in the relief of the pain? So you have any recommendations on supplements that my daughter-in-law could be taking? (She is having a hard time getting off steroids. They are not good for her liver. She is only 27 and in so much pain.) Are there any supplements for fatigue and lack of energy, e.g. vitamin B-12?
Mehrnaz_Hojjati,_MD: Yes, but the more important question is whether the pain is due to inflammation related to her lupus or if it is due to fibromyalgia. Once that is determined by her rheumatologist there are treatments aside from steroids for each condition. For your second question, again, if this is all related to lupus activity, there are a number of alternatives/steroid sparing treatments (i.e., Benlysta® [belimumab] and methotrexate). Vitamin B complex and B-12 are good as well as Vitamin D.
lucylou14: Since lupus is a disease of inappropriate reaction, can probiotics be used to help our general health? Is there anything else I can use?
Mehrnaz_Hojjati,_MD: Sure. Specifically if there is any issues with irregular bowel habit, probiotics can be helpful to regulate the bowel issues.
Capw: Are there any natural or complimentary treatments you would recommend? Do you feel that leaky gut and gluten play a significant role in the inflammation associated with systemic lupus erythematosus?
Mehrnaz_Hojjati,_MD: A gluten-free diet has modest effects as an anti-inflammatory diet and may help some people. You may want to consult with an alternative medicine physician to answer your question.
Moderator: To learn more about alternative treatments to treat arthritis, lupus and many other conditions by acupuncture, Chinese Herbal Therapy and nutrition consultations visit the Center for Integrative Medicine website at www.clevelandclinic.org/cim. You may also call toll-free 877.311.WELL(9355).
Izzypoo: Is herbal therapy being used to help lupus? If so, what symptoms does it help? I have multiple symptoms of my mouth, vagina, nasal and soft palate sores. I also have itchy, scratchy eyes. I am tired most of the time. It had a biopsy to determine the disease.
Mehrnaz_Hojjati,_MD: You may want to see an alternative medicine physician if you're interested in herbal therapy. Have you tried taking biotin and zinc? It also sounds like you have dry eyes, mouth and vagina. Have you been checked for Sjögren disease? You should discuss this with your rheumatologist.
Moderator: You may be interested in joining us in June for a chat about Chinese Herbal Therapy.
Novel Treatments and Research
lester095: Is there currently any research trials happening? I was told of one that is currently going on with Rapamune® (sirolimus).
Mehrnaz_Hojjati,_MD: At Cleveland Clinic we now are enrolling patients for the Embrace trial using Benlysta® (belimumab) for African-Americans with lupus. We just finished enrolling for a new medicine (an IL6 blocker). There are a number of new medications in the development “pipeline” that are currently in clinical trials. You can check the NIH website (www.nih.gov/health/clinicaltrials/) for more information.
lucylou14: What new treatments have been used to treat lupus? Everything has severe side effects.
Mehrnaz_Hojjati,_MD: The newest FDA approved treatment is Benlysta® (belimumab), which actually works well if used in the right setting when indicated. There are other new treatments in the “pipeline” of development, but none of which are yet FDA approved. Unfortunately, they all have side effects, depending on the symptoms and severity of the clinical issue due to lupus disease activity. However, these medications are definitely helpful, and will prevent permanent organ damage due to inflammation.
lucylou14: The good news is that you can have a good life in spite of lupus. The older treatments do have a well-known track record. What happened to DHEA as a treatment?
Mehrnaz_Hojjati,_MD: You may want to check the NIH website (www.nih.gov/health/clinicaltrials/) and see if there is any new trials for this. Prior research that I am aware did not confirm the effectiveness of this treatment, so that is why you don't hear about it anymore.
Level of Care
nursiemimi: I suffer with multiple autoimmune diseases and there is a strong hereditary predisposition in my family with these forms of diseases. I have been to Johns Hopkins, in Baltimore, and National Naval Medical Center, in Bethesda, Md. It seems—in my professional opinion as a registered nurse—that doctors will treat signs and symptoms of lupus, but do not feel comfortable or have the knowledge to treat the underlying causes of these diseases. Where are we supposed to go to find relief? People come to a hospital with the intention of walking out of there and feeling better. What can we do as health professionals because I believe what we are currently doing is not nearly enough?
Mehrnaz_Hojjati,_MD: You are absolutely right. I'm not sure what the correct answer would be though. I guess as a provider I would personally try my best to answer my patient's concerns and medical problems. Unfortunately, I cannot speak of other providers. We offer a great service at Cleveland Clinic, and providers try to address patients' specific concerns.
Moderator: I am sorry to say that our time with Dr. Mehrnaz Hojjati is now over. Thank you for sharing your expertise and time to answer questions today.
Mehrnaz_Hojjati,_MD: Thank you for your great questions. Take care.
To make an appointment with Dr. Hojjati 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
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.
On Cleveland Clinic
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.
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