What is lupus?
Lupus also called SLE (Systemic Lupus Erythematosus) is a disease of the immune system that can affect many parts of the body. It is sometimes called the “great imitator,” because lupus is often confused with other diseases due to its wide range of symptoms.
What causes lupus?
Lupus is an autoimmune disease. Normally the immune system help protect the body against viruses, bacteria and other foreign substances. In people who have lupus, the immune system becomes overactive and attacks healthy cells and tissue by mistake. Almost any organ of the body can be afffected.
Who gets lupus?
Lupus can affect anyone, but it is more common in women between the ages of 15 and 44.
Lupus is non contagious non infectious. You will not get lupus by touching or living with a patient of Lupus. Most people who develop lupus do not have a family member with the disease. However having a family member with lupus increases the risk.
Signs & Symptoms
Lupus can be very different from one person to another and hence it is a disease with many faces.
The commonest early symptoms are fatigue, pain, skin rash, hair loss. No two people with lupus have exactly the same symptoms and all symptoms do not develop in every patients. Some of the symptoms of lupus include:
• Fatigue (tiredness)
• Skin rashes
• Photosensitivity (sensitivity to sunlight)
• Joint or body pain
• Hair loss
• Raynaud’s phenomenon – fingers and toes that turn white or blue in the cold
• Mouth ulcers
• Swollen nodes
• Pain in the chest or heart
• Kidney problems like blood or protein in urine, poor kidney function
• Neurological (brain) problems, such as seizures, paralysis, headache, psychosis etc
• Recurrent pregnancy losses
• Blood abnormalities like low Hemoglobin, Platelets or WBC count
Lupus can be difficult to diagnose. It is different for every person who has it. There is no one test to diagnose lupus. However, there are a number of symptoms that, grouped together, can help your doctor decide if you should have more medical tests. Rheumatologists are the doctors who specialize in diagnosing and treating lupus.
The first thing that helps in diagnosis is a thorough checkup. Only if your check up is suggestive of lupus your doctor may want to order blood and urine tests:
Antinuclear antibody (ANA) test. This test checks for antibodies to the nucleus of your cells. A negative test makes the diagnosis of Lupus very unlikely but a positive result does not confirm Lupus. ANA screening test should be done by Immunoflourescence and not by ELISA.
Apart from ANA other routine investigations that are commonly done are
Complete blood count- may reveal anemia (low Hemoglobin), low platelet count, low WBC count
Urine analysis may show proteinuria, RBCs, WBCs or casts indicating kidney inflammation
Renal function and liver function tests
Chest X ray to look for any effusion or swelling in lungs/ heart
ECG to look for any abnormality in heart beats
How is lupus treated?
There is no cure for lupus, but treatments have improved in recent years. The kind of treatment you will need will depend on what symptoms you have and how severe your symptoms are.
If you have joint pain, sore muscles, or skin problems such as a rash, your doctor may recommend that you take nonsteroidal anti-inflammatory drugs (NSAIDs) such as ibuprofen or naproxen. Medicine that is used to treat malaria, such as hydroxychoroquine, can also be helpful in treating symptoms of lupus and preventing flares. Some people have side effects from this kind of medicine, including problems with vision and muscle strength. Corticosteroids are another kind of medicine sometimes recommended to help with inflammation, but these medicines can cause some side effects.
If you have signs or symptoms of lupus that cause problems in vital organs or the central nervous system (heart, brain and blood vessels), you will probably need stronger medicines. Stronger drugs also have the potential for more severe side-effects, and your Rheumatologist will want to monitor you closely. High-dose corticosteroids, such as prednisone, can be given by mouth or through a vein in your arm. Medicines that suppress the immune system (cyclophosphamide, azathioprine) are sometimes used to help manage severe symptoms of lupus. Both kinds of medicine can help control dangerous symptoms quickly and prevent more permanent damage. Sometimes they are used together so that the amount of each medicine is reduced. This may lessen the risk of side effects.
Because of the risk of side effects from medicines, your rheumatologist may want you to stop taking certain drugs if your lupus symptoms go away for a time (into remission). However, even if you don’t have signs or symptoms, your lupus can cause problems later, like kidney disease and kidney failure, or atherosclerosis (build-up in the arteries) which can lead to heart attack or stroke. This is why it is important to maintain good health (quit smoking, reduce high blood pressure or cholesterol) and see your Rheumatologist regularly for check-ups.
• Lupus occurs 10 times more often in women than in men.
• Treatment depends on the symptoms and how serious they are.
• Because it is a complex disease, lupus requires treatment by or consultation with a rheumatologist, a doctor who is an expert in treating lupus and other rheumatic diseases.
• People can live well with lupus if they actively work toward good health.
There is no cure for lupus, and treating lupus can be a challenge. However, treatment for lupus has improved a great deal. Treatment depends on the type of symptoms you have and how serious they are. Patients with muscle or joint pain, fatigue, rashes and other problems that are not dangerous can receive “conservative” treatment.
Common treatment options include:
• Nonsteroidal anti-inflammatory drugs (NSAIDs): NSAIDs decrease swelling, pain and fever. These drugs include ibuprofen (brand names Motrin, Advil) and naproxen (Naprosyn, Aleve). Some of these NSAIDs can cause serious side effects like stomach bleeding or kidney damage. Always check with your doctor before taking any medications that are over the counter (without a prescription) for your lupus.
• Antimalarial drugs: Patients with lupus also may receive an antimalarial medication such as hydroxychloroquine (Plaquenil). Though these drugs prevent and treat malaria, they also help relieve some lupus symptoms, such as fatigue, rashes, joint pain or mouth sores. They also may help prevent abnormal blood clotting.
• Corticosteroids and immune suppressants: Patients with serious or life-threatening problems such as kidney inflammation, lung or heart involvement, and central nervous system symptoms need more “aggressive” (stronger) treatment. This may include high-dose corticosteroids such as prednisone (Deltasone and others) and drugs that suppress the immune system. Immune suppressants include azathioprine (Imuran), cyclophosphamide (Cytoxan) and cyclosporine (Neoral, Sandimmune). Recently mycophenolate mofetilhas been used to treat severe kidney disease in lupus – referred to as lupus nephritis.
• Biologics: Newer treatment options include drugs called biologics that are already approved for treatment of other rheumatic diseases such as rheumatoid arthritis. Examples are rituximab (Rituxan) and abatacept (Orencia). These two drugs are not approved for treatment of lupus. In 2011, though, the FDA approved a biologic, belimumab (Benlysta), for treatment of active SLE in adult patients, but not for those with severe disease. It is the first new drug approved for lupus since 1955.
This exciting treatment advance occurred thanks to research studies in patients—called clinical trials. It provides hope that some of the other drugs that researchers are testing in patients will help lupus. It also underscores the need for patients with lupus to take part in studies.
• Combination treatment: Health care providers may combine a few medications to control lupus and prevent tissue damage. Each treatment has risks and benefits. Most immune-suppressing medications, for instance, may cause major side effects. Side effects of these drugs may include a raised risk of infections as well as nausea, vomiting, hair loss, diarrhea, high blood pressure and osteoporosis (weak bones). Rheumatologists may lower the dose of a drug or stop a medicine because of side effects or when the disease goes into remission. As a result, it is important to receive careful and frequent health exams and lab tests to track your symptoms and change your treatment as needed.
Broader health impact
Even when it is not active, lupus may cause problems later. Some of these problems can be fatal. One of these problems is atherosclerosis (clogging of the arteries) that may develop in younger women or may be more severe than usual. This problem raises the risk of heart attacks, heart failure and strokes. Thus, it is vital that patients with lupus lower their other risk factors for heart disease, such as smoking, high blood pressure and high cholesterol. It is also important to have as active a lifestyle as possible.
Lupus may also cause kidney disease, which can advance to kidney failure and need dialysis. You can help prevent these serious problems by seeking treatment at the first signs of kidney disease. These signs include:
• High blood pressure
• Swollen feet and hands
• Puffiness around your eyes
• Changes in urination (blood or foam in the urine, going to the bathroom more often at night, or pain or trouble urinating)
- living with lupus
Most people with lupus can live normal lives. Treatment of lupus has improved, and people with the disease are living longer. But, it is still a chronic disease that can limit activities. Quality of life can suffer because of symptoms like fatigue and joint pain. Furthermore, some people do not respond to some treatments. Also, you may not be able to predict when lupus will flare. Such problems can lead to depression, anger, loss of hope or loss of the will to keep fighting.
Here are a couple of tips that may help you when living with lupus:
• Form a support system. A good doctor-patient relationship and support from family and friends can help you cope with this chronic and often unpredictable illness.
• Get involved in your care. Learn as much as you can about lupus, your medications, and what kind of progress to expect. Take all your medications as your doctor prescribes, and visit your rheumatologist often to prevent serious problems. This lets your doctor keep track of your disease and change your treatment as needed. If you do not live near a rheumatologist, you may need to have your primary care doctor manage your lupus with the help of a rheumatologist.
• Stay active. Exercise helps keep joints flexible and may prevent heart disease and strokes. This does not mean overdoing it. Switch off doing light to moderate exercise with times of rest.
• Avoid excess sun exposure. Sunlight can cause a lupus rash to flare and may even trigger a serious flare of the disease itself. When outdoors on a sunny day, wear protective clothing (long sleeves, a big-brimmed hat) and use lots of sunscreen.
If you are a young woman with lupus and wish to have a baby, carefully plan your pregnancy. With your doctor’s guidance, time your pregnancy for when your lupus activity is low. While pregnant, avoid medications that can harm your baby. These include cyclophosphamide, cyclosporine, and mycophenolate mofetil. If you must take any of these medicines, or your disease is very active, use birth control. For more information, see “Pregnancy and Rheumatic Disease.”
Rheumatologists have long been concerned that the female hormone estrogen or treatment with estrogen may cause or worsen lupus. Recent research showed that estrogen therapy can trigger some mild or moderate flares of lupus, but does not cause symptoms to get much worse. Yet, estrogen can raise the risk of blood clots. Thus, you should not take estrogen if your blood tests show antiphospholipid antibodies (meaning you already have a high risk of blood clots).
Pregnancy and Lupus
Pregnancy and lupus is a complicated topic. There are a few key points that you can think of:
1. Pregnancy in women with lupus should be planned. It is best to make sure the disease is under good control for at least 6 months before getting pregnant.
2. The best predictor on how someone will do in pregnancy is how they did with a previous pregnancy.
3. There are certain medications that should be avoided in pregnancy. Discuss all medications with your doctor.
4. Lupus can affect a pregnancy in many ways and you should always discuss family planning with your rheumatologist.
Treatment | Systemic Lupus Erythematosus | SLE
Being diagnosed with a chronic disease like lupus can be a little scary. The first thing is don’t panic. Reading information about lupus on the Internet can be a little scary. Take a deep breath. Remember, lupus is different for everybody. Most cases of lupus are mild.
If you have lupus or think you may have lupus, your family doctor should refer you to a rheumatologist. A rheumatologist is a specialist doctor who is an expert in treating arthritis and other inflammatory conditions. This type of doctor is in the best position to help you manage your condition. You may also be referred to other specialist doctors, depending on what your lupus looks like. For example, a dermatologist can help you manage skin symptoms of lupus, and a nephrologist can help you if your kidneys are affected.
Here are some recommendations on what you should do:
• Learn as much as you can about this disease. Education is very powerful and we’ve aimed to develop this RheumInfo website to be accessible and easy to understand for everyday people living with lupus and other forms of inflammatory arthritis
• Attend your rheumatologist appointments regularly
• Get your blood tests done as suggested by your rheumatologist
• Learn about the medications used to treat lupus. The RheumInfo website has many interactive and valuable tools to help you understand these medications and their impact on your disease
Treatment of lupus
Because lupus is such a variable disease, your treatment plan will be tailored just for you. There are effective treatments available that can help relieve the symptoms of lupus that bother you. Although they do not cure the disease, they can make living with lupus much more comfortable.
People with lupus can lead active and productive lives with the right kinds of treatment. Whatever treatment approach you choose it is essential to remember two key points: treat lupus early and treat it aggressively. Don’t wait. There are great treatments available that can help you get back to leading a full life.
Why is it important to treat lupus early?
If you have lupus, your immune system is activated or “turned on.” This can cause chronic inflammation. Over time inflammation can damage the body. An important goal of treatment is to get the inflammation under control as soon as possible to prevent damage from happening.
Here’s an analogy. Imagine you are sitting in your living room enjoying a nice cup of coffee. You look over to the kitchen and see a fire burning on the stove. What do you think you’ll do? One option is to just sit there and wait until the fire gets worse and spreads to the walls or the ceiling. The second option is to grab the phone, dial the fire department, and grab the fire extinguisher. You can think of lupus like a fire in your body. You want to get that fire put out as quickly as possible so it doesn’t damage your body.
Why is it important to treat lupus aggressively?
Using the same fire analogy, we’ve decided to call in the fire department. Now we need to make sure we have the right tools to put out the fire. We don’t want a bucket and water. We want a fire truck with a big hose. We might even want more than one fire truck. The faster we can get that fire out the better things will be in the long run.
Medications for lupus
There are many medications that can be used to treat lupus. The choice of medications will depend on your specific symptoms.
Fatigue is one of the most common symptoms in people with lupus. It’s also one of the most difficult symptoms to treat. Learning how to balance the demands in your life with your need to rest can go a long way. Medications such as prednisone can be helpful but also have side effects.
Swollen and inflamed joints may be treated with medications typically used for people with rheumatoid arthritis. These include Disease-Modifying Anti-Rheumatic Drugs (DMARDs) likemethotrexate or hydroxychloroquine. For joints that ache but are not swollen, analgesics and/or a DMARD called hydroxychloroquine might help.
Chronic pain can be treated with a variety of medications – if one doesn’t work for you, try another.
Skin rash can be treated with topical medications applied directly to the skin. Other times, medications taken by mouth such as hydroxychloroquine, chloroquine, azathioprine, andmycophenolate can be useful. Prednisone can also be helpful to get skin rashes under control.
Hair loss is difficult to treat. The best solution is to keep lupus under control to prevent flares in the first place. Some medicines can also cause hair loss.
Like skin rash, mouth ulcers are treated by directly applying a medication to the sore. Sometimes prednisone can help.
When lupus affects the organs, treatment with DMARDs or biologics and high doses of prednisone may be needed to quickly get the inflammation under control.
For more information about specific medications used to treat lupus, refer to the “pictopamphlets” in the Medications section of this website.
Non-Steroidal Anti-Inflammatory Drugs or NSAIDs are medications that can help the pain and swelling of the joints caused by lupus. Luckily there are about 20 different anti-inflammatory medications available. So if one doesn’t work for you, try another.
Medications like prednisone can help control inflammation. Prednisone is a very effective medication to control many of the symptoms of lupus including fatigue, arthritis, skin rash, and mouth sores. High doses are typically used when any organs are involved.
In the short-term, prednisone works very well to rapidly control symptoms. When used for long periods of time, prednisone can have side effects. You should to discuss the risks and benefits of using prednisone with your rheumatologist. Some patients also benefit from cortisone injections directly into a joint. This should be discussed with your rheumatologist.
Analgesic medications only control pain. They do nothing to control the disease or to prevent damage to tissues such as joints. Analgesics can range from simple things like acetaminophen (Tylenol) to more potent narcotics like morphine.
The Disease Modifying Anti-Rheumatic Drugs (DMARDs) are medications that control symptoms and prevent long-term damage. Examples include methotrexate, hydroxychloroquine (Plaquenil),chloroquine (Aralen), leflunomide (Arava), azathioprine (Imuran), mycophenolate mofetil(Cellcept) or mycophenolic acid (Myfortic), and cyclophosphamide (Cytoxan).
DMARDs have been around for a long time and can work very well to control symptoms such as inflamed joints. They are also used in combination with prednisone when organs are involved. In some people, DMARDs such as hydroxychloroquine, chloroquine or azathioprine can be used to treat joint pain, skin rashes, and fatigue. Methotrexate and leflunomide (Arava) can be used to treat arthritis. When lupus is severe, medications like cyclophosphamide can be very effective in controlling the disease.
Most DMARDs take some time before they begin to work. Some people might not feel any effect when they first start taking DMARDs. Even if this happens, it’s important to keep taking DMARDs to help get the inflammation of lupus under control.
Biologics are the newest class of medications. These medications were specifically designed to treat immune disorders such as lupus. They are very effective and can make a big difference for people living with lupus. Like DMARDs, biologics control symptoms and prevent long-term joint damage.
Biologics are often given in combination with DMARDs or prednisone. This is because combination therapy has been shown to work better than treatment with either medication alone. Biologics may also help reduce the dose of prednisone that is used over the long-term.
Biologic therapies for lupus are aimed at a type of blood cell called B-cells. Two biologics are used to treat lupus: Rituxan and Benlysta. If one doesn’t work for you, your rheumatologist may suggest the other.
Chronic pain medications
Several different types of medication are available for the relief of chronic pain. Low doses of amitriptyline (Elavil), duloxetine (Cymbalta), gabapentin, pregabalin (Lyrica), and cyclobenzaprine are just a few examples. With so many chronic pain medications to choose from, if one doesn’t work for you, your rheumatologist can recommend another.
A drug called intravenous immunoglobulin (IVIG) is sometimes used in people with lupus. This drug doesn’t work in everyone. But when it does work in a given person, it can work extremely well.
Exercises for lupus
Exercise is important to overall health. Regular physical activity can also help you deal with fatigue and pain. The level and amount of exercise you can do depends on the activity of your lupus. A good rule of thumb is to aim for 20-30 minutes of physical activity every day. This can include walking or even more vigorous types of aerobic exercise.
A trained arthritis physiotherapist can help design an exercise program tailored to you and your needs. They can also help you choose mobility aids and teach you how to protect your joints if you have joint involvement.
Below are some useful articles on exercising with arthritis:
• Exercise and Arthritis: An article by arthritis physiotherapist, Marlene Thompson
• Exercising in a Flare: Another excellent article written by Marlene Thompson on how to cope with flares through your exercise routine.
Natural or Home Remedies for Lupus
There are no known natural remedies or complementary therapies that have been proven to help lupus in any significant way. However, it’s important to check with your rheumatologist to make sure that nothing interacts with your medication if you choose to use natural remedies or complementary therapies.
Diet for lupus
Questions about diet and lupus are very common. We all want to know what we can do to help ourselves. Can we change our diet to improve our immune system and help our lupus? Changing our diet gives us a sense of control over a disease which often seems to have a mind of its own.
Unfortunately, there is no diet that has been proven to significantly alter the course of lupus or other types of inflammatory arthritis. Following the basics of healthy eating can help improve health and well-being in everyone, including those with lupus. Keeping a healthy weight can help reduce the load on your weight-bearing joints. It can also help prevent or protect against weight gain that sometimes happens when people take prednisone for a long time.
Alcohol and lupus
Many of us like to share a glass of wine, a beer, or a spirit from time to time. Unfortunately, due to the nature of lupus, some people may turn to alcohol to help cope with the pain and distress. Alcoholic beverages are not an effective treatment for lupus. They can also interact with some medications. Examples include the DMARDs methotrexate, leflunomide, and azathioprine.
Smoking and lupus
Cigarette smoking, whether you have lupus or not, has no positive effects on any aspect of your health. Smoking and chronic inflammation are both recognized risk factors for heart disease. So if you are a smoker with lupus, quitting could be one of the best things you can do to improve your overall health.
Lupus is a different disease for different people. No two people have the same pattern of symptoms. Your rheumatologist will work with you to develop the best treatment plan to meet your unique needs. Different medications might be needed to target different symptoms. Sometimes several medications are used at the same time to treat lupus. Other times, one medication can relieve several different areas affected by lupus.