On November 6, Hospital for Special Surgery and the S.L.E. Lupus Foundation hosted a Facebook chat on Lupus and General Health. Participants asked many questions, but our room full of experts could only answer as much as they could during the one-hour, live event. We categorized the remaining questions, and will run a series of our experts’ answers over the next month. For our first installment, rheumatologists Dr. Jane Salmon, Dr. Michael Lockshin, and Dr. Kyriakos Kirou and Rheumatology Nurse Practitioner Monica Richey answered questions on medication.
The information provided 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 the HSS interdisciplinary team or the S.L.E. Lupus Foundation.
Q1. I am 30 and was recently diagnosed with a massive DVT and PEs. I tested positive for lupus anticoagulant and had a positive ANA as well as Sjogren’s B antibody. I also have the MTHFR gene. I’m on Coumadin, but I’m scared because I’m overweight. Will I still develop clots with this treatment? What else can I do to stay safe? I need a doctor that takes UMR insurance, but no one seems to specialize in this in Poughkeepsie.
Dr. Jane Salmon: Coumadin is an effective therapy to prevent blood clots in patients like you, but you are still at increased risk for clotting. Monitor your INR regularly to make sure it is in range, and try to lose weight. If you haven’t already, you may want to call your insurance to see whether they can refer you to a specialist in your area under your health plan. If there isn’t a specialist under your plan, it may also be helpful to call your local Lupus Foundation Chapter to see if they have further resources in your area.
Q2. Is there anything specific to take to manage ulcer in my throat and nose?
Dr. Jane Salmon: There are topical treatments which your rheumatologist or ear, nose, and throat specialist can prescribe. If you are in an overall flare, you may need oral steroid surgery.
Q3. I’ve had systemic lupus for 25 years (since I was 12 years old) and have been having trouble with gout. Is there a medicine you recommend? Also, I’m on CellCept. Is this a good medicine to be on?
Dr. Jane Salmon: CellCept has been found to be effective in many studies of lupus patients. There are a number of treatment options for gout, but they must be individualized for each patient. See a rheumatologist for this problem.
Q4. I am currently without insurance and have stopped my CellCept and Plaquenil until my new insurance kicks in. I have been experiencing a lot of pain again, so my FMD suggested temporarily increasing Prednisone to get me through. Is there something else I could do for the terrible joint pain?
Dr. Jane Salmon: The approach your physician recommends sounds reasonable. There are patient assistance programs to help patients get medications. Your rheumatologist might also be able to help you find such resources.
Q5. Are there any doctors that treat Lupus with naturopath medicine? I find that all doctors are ignorant to this and no medication has worked for me and I am so sick. I struggle with work and can’t function at all. Also, I am very sensitive to medication, so I have trouble taking them. It seems that all rheumatologists only want you to take their medication and not try alternative medicines.
Dr. Jane Salmon: Physicians are guided by evidence from research studies when they make clinical decisions. They are also guided by patients’ beliefs and wishes. It should be possible to find a rheumatologist who can work with you on combining conventional therapy and naturopathic remedies as long as you continue to take the medications that are known to be effective for your condition.
Q6. Can you elaborate on how to determine dosing with Medrol vs. Prednisone? My new rheumatologist says that one 4mg pill of Medrol is about 7.5mg of Prednisone. Is this correct?
Dr. Jane Salmon: Medrol is methylprednisolone, and a dose of 4mg is equivalent to Prednisone 5mg. There are websites with calculators, but generally, your rheumatologist should prescribe and monitor your medications.
Q7. I have been diagnosed with MCTD, SLE lupus, fibro, and Raynaud’s. I have been on Plaquinel for 18 months and still live in head to toe pain 24 hours a day. I started Savella 3 months ago and it’s still no help. It feels like acid with concrete is constantly pouring through my veins on top of every joint being stiff. Do you have any suggestions for a new medicine?
Dr. Jane Salmon: Severe pain associated with complex diseases are very disabling and emotionally challenging. Your rheumatologist or pain management specialist is best able to suggest alternative therapies.
Q8. I have hypercalciuria and osteoporosis. I’m allergic to Thiazides and have also tried Amiliride, potassium citrate and I am now trying phosphate. Do you have any suggestions on ways to stop the calcium loss? I have had to stop the vitamin D because it was increasing the urine calcium. I’ve never taken oral steroids, so the osteoporosis is linked to the urine calcium my specialists say.
Dr. Michael Lockshin: Hypercalciuria is not generally a problem with lupus. It could occur in a rare type of kidney disease, but not the typical kidney disease of lupus. One would also look at the function of the parathyroid gland, which also is not typically a problem with lupus. In general, the reason for hypercalciuria will be determined by a detailed evaluation by an endocrinologist and/or nephrologist. There would be no specific recommendation that I could make without further details. The fact that you have been prescribed the medications you list suggests that your doctor is thinking along these lines. To answer the question you ask, I would have to understand why you are losing calcium. The reason is not obvious from the information you provide.
Q9. I have RA, Lupus, and Fibromyalgia. Are there certain medications that should not be taken together? I’m currently just on 10mg of Prednisone at the moment, but my rheumatologist wants me to start Biologics. I’m very scared due to my recent TKR and 2 infections I’ve had since July. What are your thoughts?
Dr. Michael Lockshin: Many of the medications prescribed for lupus patients will reduce the ability to fight infections. Each patient has to be looked at individually, and your history of “recent TKR and 2 infections” would be something that would have to be taken into consideration. Low dose prednisone (10mg would be low dose) can often be given in conjunction with drugs such as methotrexate, CellCept, or azathioprine. In certain cases, biologics can be given together with an immunosuppressive drug or prednisone (methotrexate plus TNF alpha inhibitor [Enbrel, Humira, Remicade, Cimzia] for instance), but it depends on which biologic and which immunosuppressive, and also on the prior infection history.
Q10. How safe is CellCept? I’ve read some on it and it scares me because of some of the side effects. I’ve been on it for 7 weeks now.
Dr. Michael Lockshin: The question always is “How safe in comparison to what?” As a rule, it is very safe- certainly safer than letting lupus stay uncontrolled and safer than using high dose steroids for a long period of time. The only important concern I would have would be for pregnancy since CellCept is classified as contraindicated in pregnancy. Occasionally, patients will develop severe diarrhea when they take it, but that will go away if the drug is stopped.
Q11. SLE has affected my sleep since July. I’ve been experiencing a flare and recently started CellCept. I’ve tried sleep aids and melatonin, but nothing works. What else can I do?
Dr. Michael Lockshin: It’s very unlikely that the CellCept is interfering with sleep. Similarly, lupus is not likely to do that unless you have a lot of pain at night. However, prednisone very commonly interferes with sleep. If you’re taking it before you go to bed that might be a reason for your sleeplessness and you might discuss with your doctor the timing of your doses. Otherwise, medications such as zolpidem may be effective.
Q12. I am about to start Benlysta infusion therapy on Friday. I’m a little nervous. Have any of you had much luck with these treatments?
Dr. Michael Lockshin: We have used Benlysta a fair amount at HSS, with some patients responding really well and others not appearing to respond at all. We have not had major complications to the best of my knowledge. The drug is best used to reduce the need for prednisone or other corticosteroids. It also works best in people who have high-tier anti-DNA antibody. Beyond that, I can’t make any specific recommendations for or against it for an individual patient whom I have not met.
Q13/14. Is there anything in the naturopathic medicines that you would recommend for inflammation during flare ups?
I have seen clinical trials with cur cumin and various diseases (psoriasis, cancer, multiple myeloma, etc.). I was wondering why there haven’t been any clinical trials with lupus.
Dr. Michael Lockshin: Unfortunately, my answer to this question is no. The answer comes in part from the fact that, in formal trials, no naturopathic medicines have been shown to be helpful in lupus. Probably more importantly, one never knows what one is getting with many natural pathic medications. An article in the New York Times by Anahad O’Connor on November 3 made this point fairly strongly: https://www.nytimes.com/2013/11/05/science/herbal-supplements-are-often-not-what-they-seem.html?_r=0.
I agree with the points made in the article, having at one time in my life been chairman of the Arthritis Foundation Unproven Remedies Committee, at which time we analyzed some of the products available on the market and found the same things that are reported in the New York Times article.
Q15. I found a study for lupus that uses stem cell treatment. Will this be the new way to treat aggressive lupus?
Dr. Michael Lockshin: The idea of stem cell treatment has been around for a number of years. It has been advertised as a “back against the wall” treatment for people with extremely severe disease. However, it has very severe side effects itself and is not proven to be effective as there are theoretical reasons why it might be. While some physicians disagree, my personal view is that it will not supplant other treatments now available.
Q16. I’m currently being treated with IV Infusiinr Benlysta as other medicines weren’t working. Still, I’m not feeling any relief from this for my lupus. What other treatments are there?
Dr. Kyriakos Kirou: It often takes up to 6 months before one feels better with belimumab (benlysta) infusions. Other treatment options include hydroxychloroquine, azathioprine, mycophenolate mofetil, methotrexate, cyclophosphamide, and rituximab. Please review your options with your rheumatologist.
Q17. Is there another medication a person could take other than Prednisone? I’m not on much at this point and time, but I don’t like the side effects (mood swings and weight gain).
Dr. Kyriakos Kirou: Unfortunately, not too many medications exist that can replace glucocorticoids (or steroids) such as prednisone. This is because prednisone blocks inflammation very effectively and very promptly via multiple actions. However, more recently, there have been some encouraging studies that have tried steroid-free regimens of treatment for lupus and lupus nephritis. Hopefully, in a few years, we may be in a position to answer your question better.
Q18. My main symptom of lupus is extreme fatigue and I struggle with it daily. I am not on any medication other than Warfarin for my APS. Is there anything that could help?
Dr. Kyriakos Kirou: Fatigue is one of the most difficult symptoms to treat. It may be due to lupus or oncoming fibromyalgia. Hydroxychloroquine, or plaquenil, is often helpful.
Q19. I have had lupus for a little over a year and have autoimmune hepatitis since 1996. Is this common to have 2 autoimmune diseases and I can’t get off the prednisone without a relapse on my liver disease?
Dr. Kyriakos Kirou: It is not common to have both diseases. A source of confusion may be the non-specificity of the ANA test that is often positive in many autoimmune diseases as well as in otherwise healthy individuals. While SLE is managed by a rheumatologist, autoimmune hepatitis is often cared by a gastroenterology/hepatology specialist.
Q20. Since being diagnosed in 2009 with SLE, my vitamin D levels keep plummeting. Will I ever get off the 50,000 units of vitamin D? I do take breaks from taking them and when I do my levels drop again dangerously low. The last time it was 12.
Dr. Kyriakos Kirou: Most people require 400-2000 IU of vitamin D3 daily to achieve levels of 30-40 ng/dl of 25-OH-Vitamin D. Because it is a fat soluble vitamin, one needs to take it with food and not on an empty stomach. There is also a risk of taking too much vitamin D, especially if combined with too much calcium, as it may lead to hypercalcemia (high levels of calcium). Therefore, one should periodically check levels of vitamin D, calcium, and parathyroid hormone.
Q21. Do you see a high rate of non-compliance with lupus patients when it comes to sticking to their medication regime? When CNS lupus symptoms are an issue too, it seems non-compliance is even greater. Are there any treatments on the forefront to maybe ease the cost burden or a way to convince insurance companies to cover injectable/infusion drugs to ease some of the cost a patient has to pay for so many oral medications, which in many cases causes non-compliancy?
Monica Richey: Non-compliance happens when patients are confronted with several medications to take on a daily basis and have to deal with the side effects, so we do see a good amount in the lupus population. However, I would not say it is high.
Injectable medications can help to decrease the number of pills that patients have to take on a daily basis, but it does not solve the problem. I believe that the more patients know and understand about their medication and the reason why they take it; the more likely it is for them to continue with the prescribed treatment. It is important for physicians and patients to discuss their concerns and also their limitations to have better treatment that is individual and also fits a person?s lifestyle and financial situation.
Q22. Are there any positive results from turmeric and curcumin supplements?
Monica Richey: Turmeric and curcumin are natural anti-inflammatories. There are many studies being done at the time, but so far no real results. You can try to see if it can help you. Remember to talk to your physician to make sure it will not interact with your other medications.
Q23. I have been on Plaquenil and Methotrexate and that still didn’t help. I can’t get any answers or help with this. I have asked to go to the University of Michigan and they won’t send me. Now I have scales on my feet and they are moving up my legs. They have given me steroid cream, but it doesn’t help. What else can I do?
Monica Richey: You need a biopsy of the scales to see what they are so they can be properly treated. Sometimes it can be something completely unrelated to SLE. There are other medications for SLE despite Methotrexate and Plaquenil. It depends on what your symptoms are to see if these are the best medications for you.
Q24. I recently had bacteria found in my mouth under a bridge and then needed a root canal when more bacteria was found. Now I am suffering from a lupus flare. Is this caused by so many bacteria in my system? Should I have been on an antibiotic for a while after the bacteria was found?
Monica Richey: This is hard to tell because I don’t know what medications you are on. If you are on any kind of immunosuppressant medication, the best thing to do is to treat it right away. If you have any kind of infection, it will possibly make your lupus flare.
Jane Salmon, M.D., 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.
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. Kyriakos Kirou is a rheumatologist at Hospital for Special Surgery and is Clinical Co-Director at the Mary Kirkland Center for Lupus Care at Hospital for Special Surgery. He has a special interest in the research and treatment of systemic autoimmune rheumatic diseases, such as systemic lupus erythematosus.