Hospital for Special Surgery hosted a live Facebook chat on lupus and medications on May 16, 2012. The following is a transcript of the chat, with answers provided by the following rheumatology interdisciplinary team members.
HSS’s Rheumatology Interdisciplinary Team:
Michael Lockshin, MD Adult Rheumatologist
Jane Salmon, MD Adult Rheumatologist
Emma MacDermott, MD Pediatric Rheumatologist
Monica Richey, NP Rheumatology Nurse Practitioner
Emily Dorfman, LMSW Adult Rheumatology Social Worker
My-Lan Tran, LCSW Manager, LANtern (Lupus Asian Network) Program
The information provided in this chat is for informational and educational purposes, and doesn’t constitute medical or health advice for any individual problem. Please consult with your health care providers for any health problem and/or prior to starting any new medication or changing or discontinuing any medication you have been prescribed. This chat is not intended to create a doctor-patient relationship, or any other duty, between you and any member of HSS’s Rheumatology Interdisciplinary Team.
Dr. Michael Lockshin: That’s a hard problem. Usually you start with high dose steroid. Some patients, if they do not respond, can try immunosuppressives. I have one patient who responded brilliantly to rituximab, but every patient is different.
Q2: High dose steroids for Shrinking Lung Syndrome; what about the patient who has osteonecrosis already? Would you suggest bypassing the steroids and going directly to immunosuppressants?
Dr. Michael Lockshin: No, I would not. Despite the osteonecrosis, immunosuppressives work better when combined with steroids. Using them alone is iffy in terms of getting a good response.
Q3: What medications are most often used in conjunction with Benlysta?
Dr. Jane Salmon: Patients generally continue their Plaquenil and prednisone when they begin Benlysta.
Q4: What are the best treatments currently for lupus patients?
Dr. Emma MacDermott: The treatments used in lupus depend on your type of disease. The treatments differ depending on the part of the body affected.
Q5: I have a lupus blog and have heard that Plaquenil and CellCept are used successfully together. What has been your experience?
Dr. Michael Lockshin: Your blog is correct. In fact, Plaquenil can be used with almost any medication used for lupus.
Q6: When a patient takes too much prednisone and is diagnosed with AVN, what are the next steps for these patients? Is there anyway for AVN to be avoided while on steroids?
Dr. Emma MacDermott: AVN is an unpredictable occurrence. While it is usually seen after a longer period on steroids, it can occur after even a small dose. Maintaining bone health both before and in the event of AVN is important. In addition careful follow up with input from orthopedics and physical therapy may be useful.
Q7: Hey Dr. Lockshin, it’s your former favorite patient. I was wondering, having been on Benlysta for so long, I don’t feel that kick I once did right after treatment. Does that mean that my body has gotten used to it and it’s not working as well?
Dr. Michael Lockshin: Can’t answer that directly. Could be it’s lost its kick or could be something else. Needs a full evaluation to tell.
Q8: I am on Hydroxychloroquine-200mg twice daily and take 1-2 Aleve daily to try to alleviate pain and swelling in joints, along with many vitamin supplements. Is there any natural supplement anyone could suggest to help with daily pain? I also now am in need of a left hip replacement but would still have some constant pain due to arthritis and lupus. Do you feel that chiropractic care and/or acupuncture can help with this type of pain without the use of further drugs?
Dr. Jane Salmon: There is no evidence that vitamins help treat pain. People do sometimes respond to acupuncture. Hip replacements are a definitive treatment when pain from arthritis becomes unmanageable and the joint damage is severe.
Q9: Is there anything specific you look for to see if Benlysta is beneficial to the patient?
Monica Richey, NP: In regards to Benlysta, we look for a clinical response, meaning an improvement in the symptoms and also in our laboratory test results. The best sign for a response to Benlysta is a decrease in your symptoms.
Q10: I have read that Benlysta has taken flare symptoms away completely for some users. Is this still a maintenance medication (taken forever) or is it taken until a result is achieved and then discontinued?
Dr. Jane Salmon: For the present we are continuing Benlysta. There are no studies to guide us as to when it is safe to discontinue the medication.
Q11: Hello! I’m 44, female and have had SLE for about 15 years. Also, Raynaud’s, Sjogren’s, hypothyroidism, severe anemia, diverticulitis, DDD and vasculitis. I just recently was diagnosed with cardiac artery disease. I had to have two arteries angioplastied, more than 90% clogged, and blew a main vein in my heart, which was replaced with a 3 metal stent. Besides lupus and vasculitis, I wouldn’t be a heart disease candidate. I have low blood pressure and my cholesterol levels are always normal. I have been under a tremendous amount of stress over the last two years, which I’m trying desperately to control. I took Plavix and Lipitor for more than a month after heart surgery, but needed to discontinue Plavix because I had my gall bladder removed recently. I quit taking Lipitor about a week ago, as I read an article that says it blocks the liver enzyme that helps regulate blood sugar, and just this last year, there were 60,000+ new type 2 diabetics because of taking a statin drug daily. I love sugar so I am surprised I’ve not been diagnosed with diabetes yet. My father has it. My last cholesterol check (days ago) came out normal, without Lipitor. I am concerned about taking it and my cardiologist wants me to continue taking it. Any thoughts? Thank you!
Dr. Michael Lockshin: That’s a really hard story. Sorry to hear it. I can’t advise a patient over the Internet. Generally taking a statin is protective against more vascular disease.
Q12: Does a lupus/rheumatoid arthritis/Sjogren’s combination have any impact on tendons? I have small tears in my Achilles.
Dr. Michael Lockshin: All of those can affect tendons, but so can long-term or high dose steroid and especially the class of antibiotics that include Cipro and Levaquin.
Q13: And one more question – I am at a loss at what to do when I am in a flare. If I see my primary care doctor, they refer me to my rheumatologist or dermatologist and neither of them can see me quickly. As a result, I just suffer through it and never really get the flare under control. This is really frustrating. Any suggestions?
Dr. Jane Salmon: Make a plan with your rheumatologist for what to do when you flare. Perhaps you can make more frequent regular appointments and prevent flares with closer follow up.
My-Lan Tran, LCSW: It’s an emotionally challenging experience when our body seems to fail us. Working with our healthcare providers closely is one key in getting our physical health back on track. Being connected with peers and support programs is another key to keep our body, mind and spirit together in face of living with lupus.
Q13a: My-Lan, I appreciate the holistic approach! What I am finding though is that I am experiencing what I am calling Doctor Fatigue, for lack of a better term. With a chronic illness, sometimes the talking and appointments and on and on is exhausting (and lupus is exhausting to start with). I know it isn’t good for my health, but sometimes I can’t take on one more thing, even if a peer group or support system might be helpful. It’s just one more thing to do, check in to, attend.
My-Lan Tran, LCSW: This is a tough time for you and we hear you. Hang in there! Take a few moments to pat your own shoulders that you are doing the best you can. Visit and connect with one of our free support programs here. We would like to hear from you!
Q14: Is there any way to manage lupus without medication?
Monica Richey, NP: Unfortunately there is not a way to manage lupus without medication. Medication can help keep your lupus under control and avoid flares and complications. Having a healthy life style and diet and moderate amount of physical activity can help.
Q15: How is CellCept used for lupus patients and what are the benefits?
Dr. Emma MacDermott: CellCept is one of the immunosuppressives used in lupus. For instance, it is often used as a maintenance therapy after induction with agents such as cyclophosphamide and has the advantage for patients of being an oral medication.
Q16: What are some of the side effects to Plaquenil? Must it be taken for the duration of a patient’s life?
Dr. Emma MacDermott: Plaquenil or hydroxychloroquine is a very well tolerated and useful medication in lupus. As well as its anti-inflammatory, it is felt to have some use in delaying disease progression. It is very well tolerated and most people have no problems on the medication. One of the side effects of the medication can be inflammation of the back of the eye, and so regular screening by an ophthalmologist while on this medication is important. This is a rare side effect. Many patients are on the medication long term.
Q17: What are some of the negative side effects of Benlysta? Is there a high remission rate with this medication? Are there others like it available? Thanks.
Dr. Michael Lockshin: The biggest problem with Benlysta, like all immunosuppressive drugs, is infection – sometimes rare or unusual infections. Fortunately they are uncommon. We don’t generally think of remission rate with this drug. Its best use is to get people off steroids and control the illness, but since they stay on medication, it isn’t a complete remission. There are no drugs (yet) just like Benlysta. Rituximab has some similarity. There are lots of new drugs of this class in development, so keep watching!
Q18: Are there any new medications being tested by the FDA just for SLE that sound promising?
Dr. Jane Salmon: This is an exciting time for research on new targets to treat lupus, but all are in early stages and not yet near presentation to the FDA.
Q19: What’s on the horizon for new lupus medications?
Hospital for Special Surgery: Great question! Please reference Dr. Jane Salmon’s answer above.
Q20: Hello, I have been diagnosed with SLE for about three years now. We have tried many different medications and my body has seemed to reject many of the medications. I was taken off of prednisone about eight months ago because of having very bad side effects. My rheumatologist explained it as prednisone has become my enemy. We started Cytoxan; I took it for eight months and would be sick for two weeks and then all the lupus symptoms would come back. I suffer from extreme fatigue, chronic pain in my joints, high fevers and skin rashes. I am now taking Plaquenil and Imuran but the flare is still there. My rheumatologist calls me her puzzle as we are not sure what treatment to try next. Do you have any suggestions for treatment to help the flare that I’ve been experiencing for almost a year?
Dr. Michael Lockshin: I really can’t answer a personal question about treatment. It sounds like you’re having a horrible time. There are some experimental trials going on now. Sometimes there are other factors that interfere with a medication’s efficacy – digestive problems, for instance, or drugs that interact with one another. One thing you might consider is having a completely independent opinion – not to take you away from your doctor, but to have fresh eyes to see if something has been missed.
Q21: What is the indication for Rituxan?
Monica Richey, NP: The indication for Rituxan is for lupus nephritis and sometimes refractory lupus.
Q22: Thanks, Monica. Then I’m way off base. Maybe I was thinking of another medication that begins with “r”
Q23: I live in Northern NJ and was wondering how do I find a good rheumatologist? Currently I drive three hours each way to get to my doctor and get my monthly infusion!
Emily Dorfman, LMSW: Traveling for medical care can be stressful. You can talk to your current rheumatologist and see if there is an infusion center closer to your home that you can be referred to if you want to keep your rheumatologist. You can also speak to your rheumatologist about doctors closer to your home that they feel comfortable referring you to.
Q24: Are there any actually effective treatments for peripheral neuropathy?
Monica Richey, NP: Neurontin is a medication that is indicated to treat neuropathy. It is taper-up medication, so you start at the smallest dose and work up until you find your dose. Lyrica is also used to treat neuropathy and work in the same way as Neurontin.
Q25: My rheumatologist also explained that my lupus is refractory. What exactly does that mean?
Dr. Emma MacDermott: Refractory disease means that your disease isn’t responding in a predictable or usual fashion to the usual medications taken for the disease. Everybody’s lupus is different and sometimes it takes time to find a combination of drugs that work best for you.
Q26: Thank you Emma for explaining that to me. Does that mean once we find the right treatment it will no longer be refractory and I will not have as many flares or at least get out of the year flare that I’ve been in?
Dr. Emma MacDermott: I am sorry to hear that you are having a prolonged flare. Flares are unpredictable but it is important to continue to work closely with your rheumatologists to find the right combination for you.
Q27: Thank you, Emma. I see my rheumatologist almost four times a month and we have been trying many different treatments. I’m just hoping we find the right medications. I’m just worried that I am a lost cause. Has there ever been cases where lupus was always refractory?
Dr. Emma MacDermott: We never consider any patient a lost cause. Lupus is unpredictable and can have ups and downs. Depending upon which organ systems are involved, different combinations of medications are needed. This sounds like a very frustrating time for you but you should keep positive and keep trying to find your best combination. In addition, you should continue to maintain a healthy diet, to exercise and stay positive. It may be helpful to talk with others with similar problems. Have you considered speaking to one of the lupus support groups?
Q28: Thank you, Dr. MacDermott. I am in a support group and see a therapist and it does help a lot. You are right – it’s very frustrating, especially when my family members don’t understand how complex this disease is and how hard it is to find the right treatment, but I try my hardest to keep pushing through. I just hope we can soon find the right treatment. I thank you for all your help in answering my questions.
My-Lan Tran, LCSW: Hi, hang in there! You are not a lost cause. This is not a time to be on our own when we are down, be it physically and/or emotionally. It’s time to reach out and create a supportive community with others who have been there. Please visit us and we will talk.
Q29: Is there any particular diet that someone with lupus, fibromyalgia and rheumatoid arthritis should follow? Is there any good exercise regimens as well? I’ve been on prednisone for years and have gained a lot of weight and I would love to lose it.
Monica Richey, NP: The best diet is a diet rich in fruits, vegetables and oily fish like salmon. You should avoid fried, processed and frozen foods. Try to exercise lightly on a daily basis. For fibromyalgia, the best exercise is swimming or water aerobics.
Q30: I’ve had SLE for six years now. I’ve tried everything from methotrexate, Plaquenil, CellCept and Cytoxan and am now gone into kidney failure and started dialysis. I don’t know what to do.
Dr. Michael Lockshin: Sorry to hear that, but think of two things: lupus often quiets down when you are on dialysis and patients who get kidney transplants do well in the long run. The first several months on dialysis are the roughest, but things get better.
Q31: I am dealing with congestive heart failure and hypertension. I currently take prednisone, many blood pressure medications, Lasix, warfarin and Keppra.
Dr. Michael Lockshin: That sort of story is common when patients first suffer from kidney failure. Really meticulous management – I’m talking about both the nephrologist and the rheumatologist, and probably others as well – can get you through this hard part, and most of the problems you mention can and probably will improve.
Emily Dorfman, LMSW: It sounds like you’re experiencing a lot. It can often be helpful to speak to others who have gone through similar experiences. There are many support groups to help with this depending on where you live that can help you feel validated and help you cope.
My-Lan Tran, LCSW: Would you like to visit us and connect with one of our free lupus support programs? We also provide support through the telephone with one of our peer health educations/counselors who are lupus veterans.
Q32: I realize everyone is different in terms of effective pain management, but what non-narcotic medications do you find are most effective for pain management in lupus patients?
Dr. Jane Salmon: It depends why you hurt and where you have pain. Fibromyalgia responds to Lyrica. Arthritis responds to acetaminophen or non-steroidal anti-inflammatory medications such as naproxen. It is important to discuss these drugs with your physician before beginning to take them because they can affect the kidneys or liver.
Q33: Are there any diet dos and don’ts that might help with inflammation?
Monica Richey, NP: The best diet is rich in oily fish, fruits and vegetables. Avoid fried, processed and frozen foods as they have a large amount of salt and other preservatives.
Q34: Can Orencia be used successfully to treat lupus?
Dr. Emma MacDermott: For a patient in whom arthritis is a major component of their disease, Orencia can be useful.
Q35: Do you think it is a good idea with a patient with SLE that has tried many medications that just didn’t work, participate in a clinical trial for SLE? I have been asked to participate in one for Epratuzumab.
Dr. Michael Lockshin: Clinical trials have very strict criteria about who can and cannot participate, so your prior problems may not allow you to participate. However, clinical trials are a good option for people who are difficult to treat. Most clinical trials include a ‘placebo’ arm. That part is never any drug at all, but rather standard-of-care therapy, so you will be treated no matter which arm you are in. I can’t tell you whether it’s a good idea for you, but it is for many patients.
Q36: Thank you for answering regarding the clinical trial. I felt hat this may be my only option as I have tried many other medications that aren’t working. I would love to participate in helping get a drug specifically for systemic lupus approved by the FDA.
Dr. Michael Lockshin: Thank you for that generous thought. It’s people like you who will get us all to a real cure.
Q37: Would you have any tips or tricks for dealing with the summer heat and drastic changes in the NYC weather?
Monica Richey, NP: For the summer use sunscreen 50-70 SPF and wear long-sleeved shirts while outside. Keep yourself hydrated at all times, walk around with a water bottle. Make sure you have air conditioning to keep the humidity and heat out. If you have to go outside, go early in the morning or later in the afternoon when the sun is weaker.
Q38: Are there any medications or treatments that are used to help the chronic fatigue?
Dr. Michael Lockshin: The first thing is hydroxychloroquine if the fatigue is due to lupus. Otherwise, we sometimes use stimulants, such as modafinil or armodafinil, but these drugs have very restricted use and should be carefully discussed with your doctor before trying.
Q39: I am a patient with severe lupus and connective tissue disease with a great number of symptoms for two years, including joint pains and inflammation. I was hospitalized with infections and pancreatitis and have kidney problems but no blood work history positive for lupus. Is my only option Plaquenil and methotrexate (8 pills once a week)?
Dr. Jane Salmon: There are overlaps between lupus, rheumatoid arthritis and other connective tissue diseases. This makes treatment decisions more complex. We generally treat the manifestations. If Plaquenil and methotrexate are not sufficient, there are other immunosuppressive drugs. It’s most important to figure out which organ system is active – that can guide therapy.
Q40: I’ve been on Coumadin for years. I have had several blood clots. Will I ever be able to stop taking this or will I always be on it?
Dr. Michael Lockshin: People who have had repeated clots stay on anticoagulation, so at the moment the answer is no. However, this field is moving very fast and new and safer anticoagulation medications being tested. We may even be able to identify people who are no longer at risk so they can stop medication. This won’t happen today, but it will very soon.
Q41: As a lupus patient and advocate, thank you so much for having this chat. How do you feel alternative therapies (acupuncture, massage, meditation, herbs and supplements) help a lupus patients manage their condition?
Monica Richey, NP: Alternative treatment can help reduce pain and fatigue sometimes associated with lupus. Be sure to check with your physician to make sure there are no interactions with your medications.
Q42: My question is for Monica. If this is the same Monica, when are you going to be doing the lupus group like with the heart? It was called CV.
Q43: Hi, will you be doing other CVD groups again?
Monica Richey, NP: Yes, this is the same Monica from the CVD Program. The group is still going. The next annual meeting hasn’t been scheduled yet. Soon to come.
Q44: Are there any medications or treatments for chronic high fevers due to lupus?
Dr. Jane Salmon: It is unusual to have persistent high fevers. You and your doctors should make sure this is from your lupus.
Q45: Is there a specific medication used to treat valve (aortic) regurgitation due to lupus?
Dr. Emma MacDermott: There are no specific medications to treat valve disease. You should continue to follow with your cardiologist.
Q46: I’m pregnant with lupus and am having many complications. How can I be sure I can take certain medications?
Dr. Michael Lockshin: You give a lot of hints but not enough detail. It depends on how far along you are, what types of complications you’re talking about, what your own blood tests show and a lot of other things. Very briefly, prednisone, azathioprine (Imuran) and hydroxychloroquine (Plaquenil) are all considered safe and routinely used during pregnancy. Other medications have to be looked at one by one, and with much more detail about your specific situation. Please consult with your physician to determine treatment.
Q47: How do I get rid of the scalp sores? They just pop up and are very painful and itchy.
Dr. Michael Lockshin: Are the scalp scores due to lupus? There are many other causes and if they’re not lupus sores, the answers might be different. We usually use hydroxychloroquine (Plaquenil). There are some medications to add if Plaquenil is not successful, such as Atabrine or Dapsone if there is extensive rash elsewhere. Dermatologists use topical steroid and sometimes ‘intra-lesional’ steroid injections. There are also steroid shampoos that you can use. It depends a lot on what has already been done and how difficult the sores have been to treat. Some are very easy to get rid of and some take a lot of trying of different medications. Please consult with your physician to determine treatment.
Remember that if you have any questions based on anything you read during this chat, you should consult with your health care providers. If you are interested in setting up an appointment with any HSS’s providers, please contact Physician Referral Services at 877-606-1555 or visit them online.
Michael D. Lockshin, M.D., is Director of the Barbara Volcker Center for Women and Rheumatic Disease at Hospital for Special Surgery. He is the author of nearly 300 research papers, book chapters, and books, most on the topic of lupus, pregnancy, antiphospholipid syndrome and sex differences in disease.
Dr. Jane Salmon is Co-Director of the Mary Kirkland Center for Lupus Research, Director of the SLE APS Center of Excellence, Director of the FOCIS Center of Excellence, and Director of the Lupus Registry and Repository. Dr. Salmon’s research has focused on elucidating mechanisms of tissue injury in lupus and other autoimmune diseases. Her basic and clinical studies have expanded our understanding of pregnancy loss and organ damage in SLE and the determinants of disease outcome in lupus patients with nephritis, pregnancy, and cardiovascular disease.
Monica Richey, MSN, ANP-BC/GNP, serves as the nurse coordinator for both the Mary Kirkland Center for Lupus Care and the Cardiovascular Disease Prevention Program. Ms. Richey’s professional interests include cardiovascular disease in systemic autoimmune diseases and patient education.
My-Lan Tran, Social Worker, is the manager of LANtern (Lupus Asian Network) at Hospital for Special Surgery.
Emily Dorfman, LMSW, is the social worker for adult outpatient rheumatology patients. She received a master’s degree in social work from Columbia University School of Social Work and has extensive experience working with people with rheumatologic conditions.