- Managing Your Diet to Keep Lupus in Control
- Lupus and Fatigue
- How do you define lupus fatigue?
- Unrelated reasons for fatigue
- How to work with your doctor to understand fatigue
- How do I manage lupus fatigue?
- What Therapies Does Dr. Weil Recommend For Lupus?
- Lupus: Symptoms & Treatments
- How common is it?
- What causes lupus?
- How is lupus treated?
- Lupus: how to help yourself
- Natural relief for lupus
- Diet and nutrition with lupus
- Preventing a Lupus Flare
Managing Your Diet to Keep Lupus in Control
Although there are no specific dietary recommendations for people with systemic lupus, research has shown that some foods and vitamins may be beneficial while others may actually be harmful. As is the case with most chronic conditions, if you have lupus, the best approach to staying well is to eat a healthy, balanced diet.
Donna Jackson Nakazawa, researcher, writer, and author of The Autoimmune Epidemic, says “patients with lupus do better if they follow an ‘anti-autoimmune diet,’ which means consuming whole foods, rather than processed foods. This means lamb, chicken, or turkey; fish with low mercury content; hormone-free eggs; organic vegetables and fresh fruits; whole grains from gluten-free sources; nuts and seeds; and olive, sesame, and flaxseed oils. It also means avoiding highly processed foods, including preserved bread products, cereals and snacks, preserved meats, and other foods that are often full of chemicals, preservatives, and additives.”
If you have lupus you may have noticed that certain foods tend to lead to lupus flares. A lupus flare is a period when the symptoms of lupus become more active. Kathleen LaPlant, of Cape Cod, Mass., was diagnosed with systemic lupus several years ago. “I have learned to be careful with foods that seem to trigger lupus symptoms. The biggest trigger for me has been fried foods. I have had to eliminate these from my diet,” says LaPlant. It is hard to predict which foods may trigger a lupus flare, but you can start by paying close attention to your diet. If a particular type of food repeatedly causes problems, try taking it out of your diet and see if it makes a difference.
What Foods Should You Avoid if You Have Lupus?
Certain types of foods can bring on lupus flares in some people. These include:
- High protein foods. Although protein is an important part of any diet, too much protein can be a problem, especially if you have lupus-related kidney disease. Research has shown that a diet too high in protein can contribute to kidney damage. Ask your doctor about how much protein you should be including in your diet.
- Soy products. Soy products are high in a type of estrogen called phytoestrogen, and estrogen is known to be a risk factor for lupus. In animal studies, researchers noted that a diet high in soy seemed to make lupus symptoms worse. Although there is no definitive evidence that soy products cause lupus symptoms, you should be cautious about including large amounts of soy in your diet.
- Alfalfa sprouts. There is some evidence that a substance in alfalfa sprouts can trigger a lupus flare. In addition to sprouts, alfalfa is included in some herbal teas, so read labels carefully.
- Caffeine. Coffee and tea can reduce the amount of iron your body absorbs by half. Iron is important in preventing anemia — a common complication of lupus.
Foods You Should Add to Your Lupus Diet
These foods can be helpful for people living with lupus:
- Foods high in iron. Eating leafy green vegetables, fish, and lean meat like liver can help offset your risk of anemia. Many breakfast cereals are also fortified with iron.
- Fish. Omega-3 fatty acids, which are found in fish like salmon, mackerel, sardines, and herring, contain natural anti-inflammatory substances and may help reduce swelling and inflammation associated with systemic lupus. Your lupus diet should include plenty of fish.
- Antioxidants. Many fruits and vegetables are high in antioxidants, which are natural healers. Berries, apricots, and sweet potatoes are especially good sources.
- Vitamins. Vitamin E, zinc, vitamin A, and the B vitamins are all beneficial in a lupus diet. Vitamin C can increase your ability to absorb iron and is a good source of antioxidants. Vitamin D is especially important for people with lupus because lupus patients need to avoid the sun, and that can result in lower absorption of vitamin D. Calcium and vitamin D are known to help reduce the risk of osteoporosis, which is common in people with lupus. Your doctor may also recommend that you take calcium and vitamin D supplements to help protect your bones. Current studies are specifically exploring whether or not vitamin D may even help relieve lupus symptoms.
Lupus and Weight Control
“Keeping my weight under control has been a battle. I have tried diets. I know that being overweight increases joint stress and stress on my heart, both of which can be affected by lupus,” says LaPlant. Some of the medications that people take for lupus can make it difficult to maintain a healthy weight. Prednisone, one of the most common medications used to treat lupus flares, can increase your appetite and lead to significant weight gain. Regular, low-impact exercise can help offset weight gain and also improve your health in general.
While there are no hard and fast rules when it comes to designing a lupus diet for yourself, try to include a wide-range of foods that contain antioxidants and fatty acids. Make sure you get enough iron and vitamins, especially vitamins C and D. Use coffee and tea in moderation. Avoid highly processed and preserved foods, and keep track of foods that seem to trigger your lupus symptoms.
If you are having problems managing your diet, ask your doctor to refer you to a dietician. Having a diet plan in place can help you keep your symptoms under control and enhance your overall sense of well-being.
Lupus and Fatigue
Fatigue is a very common complaint among those living with lupus. HSS Rheumatologist, Dr. Jessica Berman indicates that research estimates 40% of lupus patients have persistent severe fatigue, meaning that the fatigue stays for a long period of time. However, in her practice she believes that almost 100% of people living with lupus experience fatigue at some point in the disease.
How do you define lupus fatigue?
Fatigue is an integral part of living with lupus. When Dr. Berman asked the group to define fatigue, a member said, “No matter how much I rest, I still feel tired. Even if I had a wonderful night’s sleep.”
“That is the perfect description of what fatigue means for those living with lupus,” Dr. Berman told the group. While healthy people will come home from work after a hard day and feel fatigued, she explained, after they sleep and rest, they are refreshed. That isn’t the case for people living with lupus. For people who don’t live with lupus every day, “The best way for them to understand what fatigue and lupus is like to tell them it’s like having the flu.” Dr. Berman added. “Nothing you can do seems to make the fatigue any better. Also, over time the more and more you experience fatigue, the more chronic it becomes.”
Dr. Berman defined fatigue as “an overwhelming, sustained sense of exhaustion and decreased capacity for mental and physical work.” This is in contrast to chronic fatigue, which is defined as “unpleasant, unusual, abnormal or excessive whole-body tiredness, disproportionate to or unrelated to activity or exertion and present for one month.” As a person living with lupus, you may experience fatigue from a slight exertion, such as showering or making breakfast. Fatigue might make it difficult to even perform these tasks. That is what distinguishes the fatigue someone living with lupus experiences from that of other people.
Dr. Berman said there are many factors that contribute to fatigue. She encouraged the group to think about other medical issues that could contribute to fatigue, as well as social and emotional issues since some of those may be modifiable. Unfortunately, among doctors who do not specialize in lupus, there may be a tendency to blame everything on lupus itself. Dr. Berman said that can be dangerous, and described some other conditions to speak to your doctor about.
- Thyroid Problems: An underactive thyroid can make you feel more tired. Most doctors check this yearly. If you haven’t had it checked, a TSH (thyroid stimulating hormone) level may be in order.
- Stress: Doctors need to be asking their patients about stress as well. While she doesn’t believe stress causes disease, she believes it certainly doesn’t help people with lupus. Stress is usually something you can modify, so speaking to your doctor about your stress level and what can help alleviate it may be a good first step.
- Depression: Being depressed definitely makes you feel tired and vice-versa. It can be a difficult cycle to break. If feelings of sadness become regular, seeing a therapist or psychiatrist may be helpful.
- Diet: Some people with lupus struggle with gastrointestinal issues and may be on restrictive diets. If you aren’t getting the right amount of calories, or aren’t able to digest the right amount of calories, you can become very worn down and this can impact your fatigue levels.
- Inflammation: Any time your body is experiencing excess inflammation, such as during a lupus flare, you will feel more tired.
- Anemia: Anemia occurs when your red blood cell count gets low. This means that the amount of oxygen going to your organs will decrease, which can increase your level of fatigue.
- Infections: Since people living with lupus are sometimes on medications that suppress the immune system, they may be more likely to get infections. When infections happen, you are likely to be more fatigued.
- Insomnia: Not sleeping well is an obvious cause of fatigue. You might not be sleeping well for a variety of reasons, including side effects from medications or pain.
- Sleep apnea: This is a problem with not being able to get enough oxygen while you sleep. Obesity or abnormal tissue in the throat can be a cause. People with this disorder often awake feeling unrefreshed.
- Low Vitamin D Levels: Vitamin D is an important vitamin that your body gets in many ways, including from the sun. Low levels of vitamin D have been shown in some studies to cause fatigue.
- Doing too much: Having too much to do can cause fatigue, even among those who are healthy. Often patients are taking on too much and need to modify their routine. If you have a list of five things to do, cross off two immediately so you can realistically manage those tasks.
Medications can cause or contribute to fatigue as well. Dr. Berman stressed that every person is different and therefore will experience medications differently. If you are doing well on your current medications, then there is no reason to believe you will not do well in the future. Below is a list of medications that may contribute to fatigue, however.
- Cold and allergy medication: While some people can get “hyper” from these medications, a lot of people feel very sleepy on them. If you need to take them to deal with allergy season, be aware some of these medications can contribute to your fatigue.
- Muscle relaxants: Sometimes you may need to take muscle relaxants, but they can make you feel quite tired. Dr. Berman usually recommends to her patients that they take them at night so they don’t interrupt your sleep cycle and you get the medication benefit.
- Blood pressure medications: While rare, these some types of these medications can have an impact on your fatigue.
- Antidepressants: Medications such as Paxil, Prozac, Zoloft, and Cymbalta can occasionally contribute to feelings of fatigue in some people.
- Pain medications: This is the class of medication that Dr. Berman said she thinks most often contributes to feelings of fatigue, particularly opioid (narcotic) pain medications.
- Prednisone: Many people living with lupus take prednisone regularly. It can act as a stimulant, causing insomnia and problems getting the necessary amount of sleep. If you are experiencing this, speak to your doctor about whether it is safe to try lowering your dose, or changing the time of day you take it.
- Diet: Diets are always of interest to patients and, unfortunately, they have not been studied in lupus well enough to easily provide clear advice to patients. There may be some data linking the intake of fish oil to decreases in fatigue.1 Other studies have looked at the use of low-sugar diets and low-calorie diets, and these have suggested such diets may have some benefit for lupus patients.2 But bigger and better studies need to be done. It’s always best to get this kind of advice individually from a nutritionist who knows all the details of your medical history. Dr. Berman advises patients against making big changes in their diet without professional advice. “Everything in moderation” is good advice.
How to work with your doctor to understand fatigue
While fatigue is a common experience, Dr. Berman believes both patients and healthcare professionals do not know enough about how to manage fatigue well.
Dr. Berman said doctors generally do not do a good job addressing their lupus patients’ concern about fatigue because many other important medical issues seem to take priority during each appointment. One way to make sure they are addressed is to talk about it at the beginning of the appointment. Here are some of the questions she asks her patients to get an idea of what to discuss with your doctor:
- Did you get good night’s sleep? Sleep is directly linked to fatigue. If you aren’t getting a good night’s sleep, you should make your doctor aware of this so that they can try to address it. It is also important to keep in mind that certain medications may cause sleeping difficulties.
- After you wake up, for how many hours can you work productively before you get hit with a wall of fatigue? This question can help you and your doctor track changes in your fatigue level over time. If at some point you used to be able to accomplish six hours of work, and currently you are only able to work for two hours, this can signal to you and your doctor that there may be some underlying issues.
- Is there something you aren’t able to do that you would want to do (within the realistic limitations of your illness)? This is an important question because it helps your doctor know what your limitations are, and therefore can help direct the doctor in managing your fatigue.
- What are your daily activities? These questions help gauge how much energy you exert on a daily basis.
- How often do you feel fatigued? This question helps your doctor get a sense of what kinds of things might influence your fatigue. If you become fatigued for a week after vacuuming, that helps your doctor understand the impact of your fatigue.
- What are the consequences of your fatigue? If you are no longer able to engage in certain activities, and are suffering emotionally as a result, this is important for your doctor to know.
- How do you cope with your fatigue? This is really important; your doctor wants to know what kinds of things you do to help manage your fatigue, and whether you are able to rely on other people for help with it. If you are lacking a support system, your doctor may be able to offer you some support.
- Can you tell your doctor how bad your fatigue is? It is important for physicians to get a sense of how the fatigue feels to the patient, so your doctor might want you to identify a number from 1 to 10 that indicates how bad it is. Dr. Berman admits that there are no perfect tools to measure fatigue, but she likes to use a visual analog scale that is used in other areas by rheumatologists (such as measuring joint pain) when assessing fatigue with her patients.
Dr. Berman said it’s important to help your doctor prioritize during your visits. She suggested writing down the top one or two issues you want to talk to your doctor about and bringing them up in the beginning of your visit, so it can focus the appointment.
In summary, there are several ways your doctor can help you manage your fatigue. The first is to look for and treat any other medical conditions that may be contributing to it. Secondly, it is important to examine your current medications and the possibility that one of them is contributing to fatigue (or the amount used or time of day it’s taken). In addition, if you are suffering from insomnia, your doctor may want to prescribe a sleep agent. Some doctors may add an “activating” medicine, such as Wellbutrin or Provigil, to improve your ability to function with fatigue. In some situations getting more exercise may be beneficial as well. Again, talk to your doctor about your individual case of lupus and fatigue.
How do I manage lupus fatigue?
In addition to working with your doctor, there are things you can do on your own to help beat fatigue. Many of these techniques help you manage your own expectations of what you should be able to do:
- Be kind to yourself while dealing with fatigue. Experiencing fatigue does not mean you are lazy. For example, when it comes to your to-do list and your housekeeping, allow yourself to cut the list down without feeling guilty. Have your groceries delivered. Though this is more expensive than shopping yourself, Dr. Berman said you should to try to think of it as putting money in your “energy bank.” If having the groceries delivered can help you get through the day with your fatigue, it might be worth it.
- Follow a balanced diet. Protein serves as long acting energy, while carbohydrates offer short-term energy. The foods that you eat can have a lot of impact on your body functioning, and the right diet can help with your fatigue. But again, everyone is different, and if you have lupus nephritis, some diets might not be appropriate for you, so talk to your doctor if you would like to try a new one.
- Listen to your body. It’s important to follow your body’s cues for needing rest. If you need to take a nap during the middle of the day, then do it. By listening to your body, you will feel better and hopefully have more energy.
- Cognitive behavioral therapy has been shown to be effective for managing fatigue. This is a therapy based upon the way you think about things – that the beliefs you have about things impact your behavior. The therapy aims to understand the impact of what may be “irrational” thoughts. For example, you might think that by not cleaning your house, you are a bad person. The therapy will work towards understanding what your beliefs are and then try to offer alternative thoughts that may improve your attitude, feelings, and emotional states.
- Exercise is important. She said she understands that when people living with lupus are feeling really fatigued, they might not feel like exercising is possible, but even just a little exercise will produce more energy. The key is that you have to have different expectations for yourself. For the exercise to be effective, it doesn’t have to be strenuous. For people living with lupus, the idea is to maintain a regular level of activity even if it is for shorter periods of time. This will improve your lung capacity and muscle strength and efficiency. Exercising also has implications for reducing pain because of its release of endorphins.
- Stretch to improve range of motion. For those living with lupus and suffering from inflammation, physical therapists emphasize the importance of stretching to improve the range of motion in your joints. Once you are at a certain level in your fitness, you can progress to strengthening your muscles. This can be done with light dumb-bells, or sometimes even household items like soup cans. The point is not to push beyond your capability. For cardiovascular workouts, it is important to engage in low-intensity exercise, as it is less harmful to the joints. Walking on the treadmill is ideal. If working with a physical therapist is of interest to you, talk to your doctor. He or she can recommend a physical therapist that can design a program for you to exercise safely and effectively.
- Take frequent breaks at work. If you are still working outside your home, managing fatigue in the work place is important. Dr. Berman suggested taking frequent breaks. Sitting for long periods of time causes us to feel stiff, so getting up to stretch will help with stiffness by getting oxygen flowing to other parts of your body. Also, Dr. Berman suggested talking to your bosses and your human resources department to see if there are any accommodations that can be made for you to increase your effectiveness at work, such as ergonomic chairs, changes to your computer screen, and possibly adjusting your hours to start later in the day a few days a week or even working from home when you aren’t feeling as well.
Dr. Berman closed her talk by saying again that one of the best ways to manage fatigue is to be kind to yourself as you deal with it.
One of the hardest things she thinks her patients living with lupus face is that they really want healthy people to understand what they are going through. Unfortunately, the truth is that healthy people are never going to understand what your fatigue feels like, and that is okay. Dr. Berman stressed that just because others don’t understand what it feels like, it doesn’t mean that what you are experiencing isn’t valid.
Allowing yourself to have different expectations is important, and reminding yourself of that is one of the best tools in your toolbox to effectively deal with fatigue.
Summary by Lysa Silverstein, MPH, MSW: Ms. Silverstein was an intern in the Department of Social Work Programs and the SLE Workshop Coordinator at the time this summary. The summary has been reviewed and updated by Dr. Berman.
1 Arriens. Nutr J 2015 Aug 18;14:82.
2 Davies, Lupus 2012 649-55.
Jessica R. Berman, MD
Assistant Program Director, Rheumatology Fellowship, Hospital for Special Surgery
Associate Attending Physician, Hospital for Special Surgery
Drugs used to treat lupus include nonsteroidal anti-inflammatory drugs (NSAIDs) such as ibuprofen and naproxen, alone or combined with other drugs for pain, swelling, and fever. Drugs that work inside cells, including antimalarial drugs such as hydroxychloroquine (Plaquenil) are used for fatigue, joint pain, skin rashes, and inflammation of the lungs. Continuous treatment with antimalarials may prevent lupus flare up from recurring.
However, the mainstays of treatment are corticosteroids such as prednisone (Deltasone), hydrocortisone, methylprednisolone (Medrol), and dexamethasone (Decadron, Hexadrol). These drugs heavily suppress inflammation but can cause short-term side effects including swelling, increased appetite, and weight gain and long-term side effects including stretch marks on the skin, weakened or damaged bones, high blood pressure, damage to the arteries, diabetes, infections, and cataracts.
When the kidneys or central nervous systems are affected immunosuppressive drugs such as cyclophosphamide (Cytoxan) and mycophenolate mofetil (CellCept) may be used. These drugs restrain the overactive immune system by blocking production of immune cells. Side effects may include nausea, vomiting, hair loss, bladder problems, decreased fertility, and increased risk of cancer and infection. The risks increase with the length of treatment.
Sometimes, methotrexate (Folex, Mexate, Rheumatrex), a powerful disease-modifying anti-rheumatic drug, is recommended.
What Therapies Does Dr. Weil Recommend For Lupus?
The male hormone DHEA (dehydroepiandrosterone), produced in the adrenals, seems to help and may reduce the need for prednisone. Although DHEA is available over-the-counter, don’t take it without medical supervision. It presents an increased risk of heart attack and breast and prostate cancer so it is vital that a physician monitor anyone taking it for lupus. Furthermore, over-the-counter brands of DHEA may not be as reliable as prescription forms.
Take a good multivitamin/multimineral supplement with recommended dosages of antioxidants. To help address inflammation, increase intake of omega-3 fatty acids by eating sardines or other oily fish (salmon, herring, mackerel) three times a week or supplementing with fish oil. Freshly ground flaxseeds (grind two tablespoons a day and sprinkle over cereals or salads) can also help decrease inflammation. Other dietary strategies include avoiding polyunsaturated vegetable oils (safflower, sunflower, corn, etc.), margarine, vegetable shortening, and all products made with partially hydrogenated oils. Eat a low-protein, plant-based diet that excludes all products made from cows’ milk, be sure to eat plenty of fresh fruits and vegetables (with the exception of alfalfa sprouts, which contain the amino acid L-canavanine that can worsen autoimmunity.)
For arthritic symptoms, take a natural anti-inflammatory agent, containing ginger and turmeric. Get the right kind of regular exercise; swimming or water aerobics are best for those who have arthritis symptoms. Investigate traditional Chinese medicine and Ayurvedic medicine, both of which often do well with autoimmune conditions. Definitely try one or more mind/body therapies, such as hypnosis or interactive guided imagery.
Autoimmune illnesses tend to wax and wane, and full remissions are possible. The mind/body connection is often obvious in the ups and downs of lupus, so take full advantage of it to promote healing. Avoid support groups that focus on symptoms, and any conventional doctor who encourages a hopeless or negative attitude toward managing the disease.
Lupus: Symptoms & Treatments
Short for systemic lupus erythematosus (SLE), lupus is an autoimmune disease that can affect many parts of the body and cause many symptoms. According to the charity Lupus UK, this means many GPs fail to recognise it, since it produces symptoms similar to a number of other, more common, conditions.
There are three main symptoms: fatigue, joint pain and swelling, and skin rashes that most typically affect the face, wrists and hands. Your symptoms can be anything from mild to severe, and they usually tend to come and go, which means you may have long periods where your symptoms are few or non-existent interspersed with sudden flare-ups (active lupus is another term for a flare-up).
Some people are only affected by the main symptoms, while others will experience others, including one or more of the following:
Flu-like symptoms (including a fever)
Recurring mouth ulcers
Swollen lymph glands
Headaches and migraines
About one in three people who have lupus are also affected by inflammation of the kidneys, which can sometimes lead to kidney damage. And because lupus can cause high blood pressure and high cholesterol, it can affect your heart too (it can also make the tissues around your heart inflamed, which is a condition called pericarditis). Your lungs can also be affected, causing a condition called pleurisy. Arthritis Research UK claims lupus may also cause narrowing of the blood vessels, which can lead to an increased risk of angina, heart attacks and stroke.
Around a third of people with lupus also develop another autoimmune disease, such as hypothyroidism (underactive thyroid) or rheumatoid arthritis. Other related conditions include Raynaud’s phenomenon (poor circulation in the fingers and toes) and Sjögren’s syndrome (severe dryness of the eyes and mouth).
How common is it?
It’s thought that about five in 10,000 people in the UK are affected by lupus. The disease is nine or 10 times more common in women than in men, and most usually develops when you’re between the ages of 20 and 40 (though anyone can be affected, irrespective of age). Lupus is also more common in people from certain ethic backgrounds, including those from Asia, China, Africa and the Caribbean.
Meanwhile, SLE isn’t the only form of lupus:
This generally affects the skin, often causing a more severe rash than SLE and sometimes more severe hair loss. It rarely affects the internal organs, though some people with discoid lupus may go on to develop SLE. The rash is often triggered by exposure to sunlight.
Certain people who take certain medicines for a long time can develop drug-induced lupus as a side effect. The symptoms are similar to those of SLE (though in most cases they are milder), and, like SLE, are caused by an autoimmune response where your immune system attacks your body tissues. Some of the drugs with proven links to drug-induced lupus include hydralazine, procainamide, sulphasalazine and penicillamine.
What causes lupus?
If you have lupus, it means your immune system produces antibodies that attack healthy tissue in one or more parts of your body (these antibodies are called autoantibodies). This can cause inflammation and tissue damage in places such as your skin, joints, muscles, blood cells and vessels, brain, nerves, lungs, heart, kidneys or digestive system, as well as the linings around your internal organs. Nobody knows why this happens. However according to Arthritis Research UK it’s probably caused by a combination of genetic, environmental and hormonal factors.
Lupus isn’t directly passed from parents to children, but a child has a one in 100 chance of developing lupus if one of their parents has it. If you have a close relative who has the disease – a brother or sister, for instance – your risk of developing it is higher than average. According to Lupus UK, people with lupus also often have family members with other autoimmune conditions such as diabetes, multiple sclerosis or rheumatoid arthritis.
The NHS claims a number of environmental factors may be responsible for triggering lupus in susceptible people, though the evidence for many of these factors is limited. Some of the environment factors linked with lupus include exposure to sunlight, smoking and certain viruses such as the Epstein-Barr virus. Discover more on how the sun affects your skin in our helpful guide.
Since women are much more likely to develop lupus than men, it’s also thought the hormonal changes that happen around puberty, after childbirth or during the menopause may trigger it.
If you have lupus, it doesn’t mean you can’t have children, and only a small number of women with severe lupus may be advised not to go through a pregnancy. However health experts say you should try to plan your pregnancy when your lupus isn’t active, and discuss your plans with your GP so your treatment can be adjusted if necessary. According to Arthritis Research UK, if your condition is well controlled at the time your baby is conceived and you don’t have kidney disease, you’re unlikely to have any problems.
How is lupus treated?
Modern conventional treatments for lupus are considered far more effective than they were in the past, and these days most people with lupus can live normal lives. What treatments you may have to take for lupus may vary from time to time and will depend on your symptoms – including how mild or severe they are – and which parts of your body are affected. Some people also find their symptoms stop altogether in time – often when they reach middle age – and can come off their treatments altogether. The main conventional treatments include the following:
Non-steroidal anti-inflammatory drugs (NSAIDs) such as ibuprofen, naproxen and diclofenac are used to relieve joint and muscle pain in people with lupus. If your pain is mild, versions of these drugs that are available over the counter are helpful. But if you have more severe pain, you’ll need a prescription for stronger NSAIDs from your GP. Some people experience stomach problems – including bleeding – when they take NSAIDs. So if you have to take these medicines for longer periods of time you may also be prescribed other drugs to protect your stomach.
Speak to your GP before taking NSAIDs, as these drugs aren’t suitable for everyone, particularly those with asthma or with stomach, kidney or liver problems.
A drug called hydroxychloroquine, which was originally developed as a treatment for malaria, can be used to help treat joint pain, skin problems and tiredness. Often used in cases of mild to moderate lupus, hydroxychloroquine can help to reduce inflammation and may also help lower cholesterol and control kidney disease. With side effects uncommon hydroxychloroquine is generally well tolerated, but in rare cases can cause eye damage.
Steroid creams may be useful for lupus skin rashes, but steroid tablets are only usually prescribed in severe cases to help treat inflammation quickly. They can sometimes also be used as a long-term treatment for kidney inflammation or severe blood problems, or in the short term to treat lupus complications such as pleurisy or pericarditis. However, if taken for long periods they can cause side effects such as weight gain, high blood pressure, thinning of the skin and thinning of the bones (osteoporosis).
Drugs used to dampen down an overactive immune system are sometimes used alongside corticosteroids and can help reduce the damage your immune system causes when it attacks healthy tissues. They are thought to help control high blood pressure as well as reduce the risk of kidney problems developing. Some of the most commonly prescribed immunosuppressants are methotrexate, azathioprine and cyclophosphamide.
These days newer drugs called rituximab and belimumab are sometimes prescribed for people with severe lupus. These are known as biological therapies, and they work by reducing the activity of particular immune system cells that produce the harmful autoantibodies that cause lupus symptoms. If you’re prescribed either of these therapies you’ll be monitored closely by your GP, as both drugs can cause unwanted side effects.
Lupus: how to help yourself
Besides taking any medication your GP has prescribed for your lupus, there are several ways you can help keep your symptoms under control:
You don’t have to follow any special diet if you have lupus, but you can help boost your general wellbeing by eating healthily. According to the charity St Thomas’ Lupus Trust, it may be a good idea to increase your intake of oily fish slightly – such as mackerel, sardines and salmon – while eating a little less red meat. The charity also advises that the only food you should avoid is alfalfa sprouts, as they may trigger a flare-up. Eating healthily may also help you to manage your weight. This can be important if you have lupus, since being overweight or obese increases your risk of heart attack and stroke – both of which you may be more susceptible to if you have lupus.
Do some gentle exercise
People who have lupus often suffer from bouts of fatigue, so launching into a fully-blown exercise plan if you’re not already that active probably isn’t the best idea. It’s good to be active as often as you can, as this can help with your overall health and wellbeing as well as keep your weight down and your muscles strong. Just take things easy, and build up the intensity and the amount of time you spend being active gradually. If you need help with devising a fitness plan, ask your GP to refer you to a physiotherapist who can advise you about suitable exercises.
Stay out of the sun
If you’re exposed to strong sunlight it can make some of the symptoms of lupus worse, especially skin problems such as rashes (though not everyone with lupus is sensitive to the sun). Whenever you’re out and about on a sunny day, try to protect your skin by keeping as much of it covered as possible. Wear a wide-brimmed hat, and apply high-SPF sunscreen to any parts of your skin that aren’t covered with clothing. Find out more about sun protection, including how you can protect it from getting burned.
If you avoid sun exposure as a result of having lupus, there’s a chance you may not be getting enough vitamin D, since your body makes most of your vitamin D when your skin is exposed to sunlight. People in the UK who avoid the sun are advised to take vitamin D supplements to make sure they don’t become deficient. If you need more information, speak to your GP.
According to Arthritis Research UK, smoking can make some lupus symptoms and complications worse. If you need help with giving up smoking, you can buy nicotine-replacement therapy products over the counter at pharmacies, including patches, gum and lozenges. These are designed to help you control your cravings for nicotine.
People with lupus can be more likely to pick up infections, particularly those who take steroid or immunosuppressant medicines. That’s why it’s often recommended you avoid contact with people who have infections if you have lupus.
Keep stress at bay
Having a long-term condition such as lupus can put you under extra stress. And according to some experts, emotional stress can make the symptoms of lupus worse too. So if you’re affected it could be a good idea to manage your stress levels by learning relaxation techniques such as deep breathing, yoga or meditation.
Natural relief for lupus
If you have lupus, a healthy balanced diet can support your general health and wellbeing. But you may get some benefit from using certain nutritional supplements too.
The anti-inflammatory effects of curcumin – an active ingredient found in turmeric – could make this well-known culinary spice useful in cases of lupus. There is some evidence it may help with pain (i). In vitro studies also suggest curcumin may improve autoimmune disorders (ii).
Several clinical trials suggest the omega-3 fatty acids found in fish oils may benefit people with lupus. One claims fish oil supplements reduce the activity of lupus (iii), while an animal-based trial suggests taking one of the omega-3 fatty acids in oily fish – namely docosahexaenoic acid (DHA) – may prevent crystalline silica, a known trigger of lupus, from triggering the disease (iv). Other studies suggest taking omega-3 fatty acids may help with the treatment of lupus because of their anti-inflammatory properties (v).
Vitamin B complex
Even if you get plenty of vitamin B12 in your diet, if you also have lupus or another autoimmune disorder your B12 levels may well be lower than they should be, as one study suggests low blood levels of B12 may be frequent in people with lupus, rheumatoid arthritis and psoriatic arthritis (vi). Supplementing your diet with a good vitamin B complex tablet – which includes vitamin B12 – may help counteract the fatigue that’s often associated with both lupus and B12 deficiency. Folic acid – another B vitamin – has been shown to reduce lupus symptoms in animal studies (vii), while one study suggests higher intakes of vitamin B6 may help prevent lupus flare-ups (viii). Meanwhile several members of the B vitamin family are helpful in providing support for the brain and nervous system.
Vitamins C, E and selenium
As antioxidants, these vitamins are widely thought to have anti-inflammatory properties. There’s also evidence that vitamin C may reduce the risk of a lupus flare-up (ix), and a preliminary study suggests vitamin E may suppress the immune system’s production of autoantibodies by a mechanism other than that of its antioxidant activity (x). Also an antioxidant, selenium is often used by natural health practitioners to treat inflammation and some think it could be useful for combating the oxidative stress that leads to lupus-related fatigue.
If you’re deficient in zinc, it’s thought that taking this mineral in supplement form may help maintain normal immune system function. Zinc may also be helpful for those who have a lupus rash as it’s thought to promote healthy skin.
High-strength multivitamin and mineral
As well as providing an overall decent level of nutrition, taking a good-quality multivitamin and mineral supplement can provide several of the nutrients already mentioned, so may help maintain normal skin and the normal function of the immune system.
This flavonoid antioxidant found in richly coloured fruit and vegetables has been shown not only to reduce inflammation but to also regulate the immune system (xi). There is also evidence that quercetin may reduce inflammatory pain, which suggests it may be helpful for those with autoimmune conditions, including inflammatory forms of arthritis (xii). It might help with sun-induced skin rashes too, with one study claiming it helps reduce photosensitivity (an extreme sensitivity to the sun’s UV rays) (xiii). Quercetin is also available in supplement form.
Also found in richly coloured fruit, anthocyanidins are powerful antioxidants that are thought to help protect the skin from harmful UV rays. One study – which used anthocyanidins supplements sourced from pine bark extract – suggests they may reduce skin reddening caused by sun exposure (xiv). It may also be helpful to use a supplement that combines anthocyanidins with another antioxidant called lutein, since there is some evidence it may help protect the skin against some of the damaging effects of the sun, specifically UVB light (xv).
We know that managing lupus on a daily basis can become overwhelming, but this guide should help to make it a little easier. For more information on a number of common health conditions, feel free to visit our health library.
Disclaimer: The information presented by Nature’s Best is for informational purposes only. It is based on scientific studies (human, animal, or in vitro), clinical experience, or traditional usage as cited in each article. The results reported may not necessarily occur in all individuals. Self-treatment is not recommended for life-threatening conditions that require medical treatment under a doctor’s care. For many of the conditions discussed, treatment with prescription or over the counter medication is also available. Consult your doctor, practitioner, and/or pharmacist for any health problem and before using any supplements or before making any changes in prescribed medications.
Christine Morgan has been a freelance health and wellbeing journalist for almost 20 years, having written for numerous publications including the Daily Mirror, S Magazine, Top Sante, Healthy, Woman & Home, Zest, Allergy, Healthy Times and Pregnancy & Birth; she has also edited several titles such as Women’ Health, Shine’s Real Health & Beauty and All About Health.
When to Call a Doctor
- Any time you notice the symptoms of lupus.
- Any time your lupus suddenly worsens or you develop new symptoms.
- Any time you have along illness you can’t explain, especially if you have fever, joint pain, weight loss, rashes, or breathing difficulties.
From David Edelberg, M.D. at WholeHealth Chicago: For somebody with lupus, the body is a battlefield, where a rogue immune system, an inappropriate inflammatory response, and the side effects of powerful drugs brought in to suppress both the immune system and the inflammation all duke it out. You’ve got to clean up the mess to heal.
All of these supplements are for long-term use; they can be taken together and with conventional drugs. You may see some improvement within a month. Lupus is a serious condition, so make sure your doctor is aware of their use.
How to Take the Supplements
In lupus, it’s particularly important that you take a daily high-potency multivitamin (which contains essential B vitamins), as well as a good antioxidant combination. Because some studies have reported low antioxidant levels in lupus patients, additional vitamin C and vitamin E are also recommended. One study, for instance, showed that high doses of vitamin E (900 IU-1,600 IU daily) cleared skin lesions in patients with discoid lupus.
For further antioxidant protection, you should add selenium and zinc with copper (copper is needed when taking zinc over the long term).
The essential fatty acids in fish oil, flaxseed oil, and evening primrose oil (or borage oil) act as natural anti-inflammatories, protecting your joints, kidneys, and skin. Add grape seed extract not only as a potent antioxidant but also for its ability to reinforce collagen and other connective tissues (lupus is classified as a connective tissue disorder).
Recent research on the hormone DHEA is showing that high doses of the nutritional supplement may work as well as steroid medications do to calm down active lupus–and without steroids’ unpleasant side effects (such as weight gain, hair loss, and diabetes). Taking DHEA requires medical guidance, but given the side effects of high-dose steroids, it’s worth seeking out a physician who will work with you.
Bromelain, a pineapple-based enzyme, is very safe to use on an ongoing basis. You might consider bromelain whenever your doctor recommends that you try using a nonsteroidal anti-inflammatory drug (NSAID), such as aspirin or ibuprofen.
We at WholeHealth Chicago strongly recommend that everyone take a high-potency multivitamin/mineral and well-balanced antioxidant complex every day. It may be necessary to adjust the dosages outlined below to account for your own daily vitamin regimen. All of our supplement recommendations also assume you are eating a healthful diet.
Be aware that certain cautions are associated with taking individual supplements, especially if you have other medical conditions and/or you’re taking medications. Key cautions are given in the listing below, but you need to see the WholeHealth Chicago Reference Library for a comprehensive discussion of each supplement’s cautions and drug/nutrient interactions.
For product recommendations and orders for the Natural Apothecary or call 773-296-6700 ext. 2001.
Diet and nutrition with lupus
There is no special diet for lupus, despite numerous claims on the Internet, and in various books and other publications. In general, you should try to eat a nutritious, well-balanced, and varied diet that contains plenty of fresh fruits and vegetables, whole grains and moderate amounts of meats, poultry, and fish.
One food for people with lupus to avoid is alfalfa. Alfalfa tablets have been associated with reports of a lupus-like syndrome or lupus flares. The lupus-like effects may include muscle pain, fatigue, abnormal blood test results, changes in how the immune system functions, and kidney problems. These reactions may be due to the amino acid L-canavanine (found in alfalfa seeds and sprouts, but not in leaves), which can activate the immune system and increase inflammation.
If you plan to add herbs, dietary supplements, or vitamins to your diet, you should discuss your decision with your lupus doctor first. This is especially important as herbs or supplements may interact with medicines used to treat lupus. Herbs or supplements should never be used to replace medicines prescribed to control symptoms of lupus or medication side effects.
You may have to cut back or eliminate certain items from your diet because of the medications you are taking, or because of the damage that lupus has done to certain parts of your body.
Guidance on alcohol use with lupus
Moderate use of alcohol is usually not a problem for people with lupus, but alcohol can lower the effectiveness of some medications, cause new health problems, and/or can make existing problems worse. For example, non-steroidal anti-inflammatory drugs — such as aspirin, ibuprofen (Motrin®), naproxen (Naprosyn®), and celecoxib (Celebrex®) — can cause ulcers and bleeding in the stomach and intestines at any time during treatment; the chance of developing an ulcer or internal bleeding increases with alcohol use. Also, anticoagulant medicines such as warfarin (Coumadin®) and the chemotherapy drug, methotrexate, may not be as effective if you are drinking alcohol.
Dietary considerations for corticosteroid use
Corticosteroids can elevate blood pressure and the levels of cholesterol and lipids in the blood. If you are taking steroids, you should limit the fat and salt in your diet as both can contribute to these conditions.
Corticosteroids also can cause or worsen osteoporosis, a disease in which bones become fragile and more likely to break. If you have osteoporosis, you should eat foods rich in calcium every day to help with bone growth. Examples are dark green, leafy vegetables (spinach, broccoli, collard greens), milk, cheese, and yogurt or calcium supplements that contain Vitamin D.
If you are experiencing fluid retention that causes swelling (edema), you should lower the amount of salt and sodium-containing foods you eat; in particular, processed foods should be avoided.
Read more about managing steroid-related weight gain.
Common dietary questions
Should people with lupus stop eating red meat?
There’s no scientific evidence that avoiding red meat will have an effect on lupus. If you have kidney disease, red meat can give you more protein than your kidneys can handle. If you have high cholesterol or high triglyceride levels, red meat can raise these further. On the other hand, if you have inflammation in your body you need more protein than when you’re healthy. So the bottom line is to eat a well-balanced diet. If you’re not sure how much you should be eating, ask your doctor to refer you to a Registered Dietitian for a consultation.
Should a person with lupus be on a gluten-free diet?
If you also have celiac disease, a gluten-free diet is critical. Otherwise, there is no evidence that gluten worsens or improves inflammation in any other autoimmune disease such as lupus. If you haven’t been tested for celiac disease, there is a blood test that can be done to detect it.
Are vegetarian or vegan diets okay for people with lupus?
Vegetarian or vegan diets are okay, but you need to take a multivitamin that includes vitamin B12, as this vitamin can only be obtained through animal products. Otherwise you might develop anemia and nerve damage. Also, it’s important to mix your sources of protein so that you get complete proteins – for example rice and beans, or corn and wheat. Animal proteins, dairy, and eggs are complete proteins, but vegetable proteins are generally low in one or more amino acids, which makes them inadequate as sole sources of protein.
Preventing a Lupus Flare
One of the hardest things about living with systemic lupus is coping with unpredictability; if you have lupus, you will go through periods when your disease seems to be quiet and periods when it’s active and your symptoms worsen.
These periods of feeling worse are known as lupus flares. Although there is no way you or your doctor can completely predict or prevent a lupus flare, you can identify and try to avoid known triggers to reduce your risk for flares.
Making appropriate lifestyle changes can also help reduce your risk for a lupus flare.
“Some of the common triggers in systemic lupus are sunlight, infections, and stress,” says Amita Bishnoi, MD, a rheumatologist at Henry Ford Hospital in Detroit. Other common triggers include being overtired, starting or stopping medications, becoming pregnant, or undergoing any physical stress, such as surgery or an injury.
Lupus Flares and Lifestyle Changes
“The best thing you can do is live a healthy lifestyle,” says Ellen Ginzler, MD, a professor of medicine and chief of rheumatology at State University of New York Downstate Medical Center in New York City. “Stay active, eat a healthy diet, stay out of the sun, and don’t smoke.”
Other things you can do include:
- Visit your doctor regularly. To maintain your health, make sure you stick to scheduled doctor visits and let your doctor know if symptoms seem to be getting worse.
- Get plenty of rest. Manage your schedule to avoid becoming overtired or overworked.
- Watch out for stress. Some stress is unavoidable, and having a chronic disease is stressful by itself, but it’s important for people with lupus to avoid putting themselves in stressful situations when possible. Learn some techniques that help you manage your stress. Meditation is an excellent way to reduce stress and decrease your risk for a lupus flare.
- Avoid physical stress. Regular exercise is a great way to stay strong and fit. If you need to undergo a procedure that will require recuperation time, schedule it when your lupus is not active. It’s best to wait to get pregnant until your doctor clears you for it, for the same reason.
- Avoid sunlight whenever possible. If you have to be in the sun, use a sunscreen with a high sun protection factor (like SPF 70) and wear protective clothing. Make sure your sunscreen protects against both UVA and UVB rays. Remember that halogen and fluorescent lights also give off ultraviolet light, so avoid prolonged exposure to them as well.
- Take your medications as prescribed. Never start or stop a medication without checking with your doctor first. Many medications, including some over-the-counter drugs, can trigger lupus flares. Some antibiotics in the sulfa family, for instance, increase sun sensitivity and may increase your risk for a flare. Talk to your doctor or pharmacist before taking any new medication, supplement, or herbal treatment.
- Be careful with certain foods and supplements. Avoid alfalfa sprouts, which contain a substance that may increase inflammation and trigger a flare. Some people may have a similar reaction to garlic, which is sometimes used as a health supplement. Other supplements that have been linked to lupus flares include melatonin, often used as a sleep aid, and echinacea, used to fight colds.
What Should You Do If You Sense a Lupus Flare Coming On?
Many people with lupus eventually become attuned to their body’s rhythms enough to sense when a possible flare is coming. At these times you can rest and use stress management techniques, but once actual symptoms of a flare begin, you shouldn’t try to handle it on your own. Some common flare symptoms include:
- Increased fatigue
- New or worsening rash
- Joint and muscle pain
- Headache or dizziness
- Sores or ulcers in the mouth
- Swelling in the legs
- Any new symptoms
When you think a flare is starting, it’s best to see your doctor as soon as possible.
The best way to manage lupus and avoid flares is to learn as much about your disease as you can and to follow these simple guidelines: Listen to your body, learn what your own triggers and early warning signs are, stick to your lupus treatment plan, and take good care of yourself.