On May 14, Hospital for Special Surgery and the S.L.E. Lupus Foundation hosted a Facebook chat on Lupus and General Health. Participants asked more than 160 questions, but our room full of experts could only answer 61 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 second installment, rheumatologist Dr. Jane Salmon answered questions on treatment and the effect of the sun. Rheumatology nurse practitioner Monica Richey answered questions on diet and lupus.
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.
I am a 17-year-old girl who was diagnosed with SLE a year ago. I had most of the symptoms but I was misdiagnosed two times. For a whole year doctors struggled to find what’s wrong with me. When they finally did diagnose it, they did all kinds of tests and biopsies, etc. and none of my major organs were infected. I have the fear of getting organ failure at such a young age. How can I at least try to prevent that from happening?
Learn about lupus, so you can seek medical attention when you suspect that it is flaring. Avoid the sun and, if you are not already taking hydroxychloroquine, discuss it with your rheumatologist. It is a medication that is used to prevent flares.
I have SLE. Why do my hands stay swollen? What can I take for this? Diuretics don’t help.
There are many reasons for swollen hands and treatment depends upon what is causing the condition. Talk to your rheumatologist about this symptom.
I was diagnosed with lupus SLE at age 58. Will I have fewer issues because I am older?
Lupus tends to become less active by age 58, but every patient is different. Heart disease is increased in patients with lupus even when it is inactive. It is important to be live a heart healthy life (exercise, maintain normal cholesterol, do not smoke).
Is there anything else besides predisnone that will help with inflammation?
There are a number of steroid-sparing drugs that limit inflammation for patients who need continuous treatment for lupus activity. Speak to your rheumatologists about alternatives.
While vitamin D deficiency may not be caused by lupus, many people with lupus do have a vitamin D deficiency because we must avoid the sun.
It is important to maintain your vitamin D levels in the normal range. Vitamin D promotes bone health and may be good for the immune system. If your doctor tells you that your vitamin D is low, vitamin D supplements can restore them to normal levels. Discuss this with your treating physician before starting a new supplement regimen.
I have SLE. If I go into remission, may I go into the sun?
Sun exposure can trigger serious flares. It is important to avoid sun whether your lupus is active or quiescent. Wear sunscreen and a sun hat and cover your arms and legs with light, cool clothing.
Can juicing help my lupus symptoms?
Juicing per se will not help your lupus, but keeping a healthy diet and avoiding fried or processed foods help reduce the burden of cardiovascular disease that can happen with lupus. This diet also can help you feel better. By juicing you increase your intake of raw vegetable and fruits, which is good for you. Your body needs all nutrients, though, so keep a healthy diet, such as a Mediterranean diet with a good amount of omega-3s, fruits, vegetables, olive oil and nuts (if you are not allergic).
I’ve been told to avoid garlic and noticed more pain when I do use garlic. Could this be related?
Garlic is sometimes used to boost the immune system. Lupus patient should avoid herbs, vegetables and fruits that are known to boost your immune system, as yours is already in hyper mode. Also remember that lupus triggers are very personal. So if you noticed that garlic makes you flare, avoid it.
Some other triggers I’ve heard are: bread, potatoes, tomatoes, peppers and eggplants. Can cutting these foods help?
Tomatoes, potatoes, peppers and eggplants are the night shade vegetables and some believe they make people with joint problems flare. That said, there is no scientific evidence supporting that. Bread has gluten, which in people who have a gluten allergy (celiac disease) can make things worse. You should keep a diary and start to decrease or avoid these foods and see if it helps. Make sure to mark what foods you ate or did not eat and how your symptoms are. To make sure you are ridding your body of the foods, you should try it for at least a few months.
I tried ginger for nausea, and it really works. Could this be true?
Ginger is a very old medication for nausea, and it does work!
I dehydrate really easily. Is this normal for lupus?
This may be a result of different factors: if you are flaring, what medications you are taking, etc. Some medications (such as diuretics) can make you dehydrate more easily. Keep hydrated by drinking about 4-6 glasses of water per day (if you have no kidney/heart problems). This should not include substitutes such as sodas, coffee and tea as they are also diuretics.
Can lupus cause issues with digesting? Over the last few months I have now lost two and half stone and can go days without feeling hungry. When I force myself to eat it causes pain or vomiting.
Sometimes lupus can affect your digestive system, and sometimes the medications can also cause problems with your stomach. You should see a gastroenterologist and discuss having an endoscopy.
My daughter has had lupus for several years now (she is 19). Does lupus have any effect on weight gain? She has been having trouble losing. She diets and exercises regularly.
Lupus per se does not cause problems with weight, but some medications (particularly steroids) will make it very difficult to lose weight. If she is on steroids, the best thing to do is to continue to keep a healthy diet and exercises routinely. Once she is off steroids (prednisone or others), she will likely lose the weight if she continues with her routine.
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.