SLE, systemic lupus erythematosus, is a chronic inflammatory disease associated with rheumatic diseases. The immune system attacks your own body when you have SLE.
Heredity, smoking, and some drugs can increase the risk of getting SLE. The trouble comes and goes for periods, sometimes you are ill and sometimes you have no problems at all. Most often it is the joints, skin, blood and kidneys that become inflamed, but also the nervous system, lungs and heart can be affected.
You may not recover completely from SLE, but the symptoms of systemic lupus erythematosus can be relieved by medication for the pain and inflammation. Cell inhibitors, so-called cytostatic drugs, and cortisone can help if you have severe problems. You may need to be nursed for a while in the hospital if the internal organs become inflamed.
Many people get a mild variant of the disease, but some get more difficult. Nine out of ten who get the disease are women.
Symptoms of systemic lupus erythematosus
SLE can cause many different symptoms and the problems can be similar to many other diseases. The disease is also very different in different people. You can usually only get some of the symptoms of SLE associated with the disease.
The problems come and go, depending on how active the disease is.
Common symptoms of systemic lupus erythematosus are:
- Fatigue, fever and weight loss.
- Pain in the joints.
- Pain in the muscles.
- Inflammation of the late skis.
- Rashes on the skin.
- Sun sensitivity.
- Hair loss.
- Ulcers in the mouth.
- Cardiac or pulmonary inflammation.
- Inflammation of the kidney.
- Symptoms of the nervous system.
- Blood changes.
- Inflammation of the blood vessels.
- Raynaud’s phenomenon – blood vessels in fingers or toes contract during colds.
You may also have other symptoms. It is therefore important that you tell your doctor about new problems as they come.
Fatigue, fever and weight loss
Many people who have SLE sometimes feel a crippling fatigue that does not go over, even though they sleep. Sometimes the fatigue comes along with other signs that the disease is active, but it can also be there when the disease is calm. Other common symptoms are fever with no signs of inflammation and losing weight.
Pain in the joints
The vast majority of people who have SLE sometimes get hurt in the joints. The joint pain can sit in small joints in hands and feet, or in large joints such as knees and shoulders. The joints are often inflamed. You notice it when a joint becomes swollen, tender and sometimes warm. Inflamed joints tend to solidify during the night or when you sit still for a long time, for example on the sofa. Then it is good that you move. It usually takes a while for the stiffness to decrease.
You may sometimes experience that joint inflammation moves between different joints. It may be that you have a hot and sore knee one day which is good again the next day, but instead you have a wrist, for example.
Pain in the muscles
It is very common for people to have pain and feel stiff in the muscles. Just as with joint pain, it can feel worst when you get up in the morning or after a while sitting. The muscle aches usually vary with how active the disease is.
Inflammation of the late skis
The tendons that run around the joints are an extension of the muscles. Around the tendons are late skis. They can also become inflamed when you have SLE. You usually notice it on your hands. Then not only are the joints inflamed, but the swelling and tenderness are more spread throughout the hand.
You may have misalignments in the joints, such as the fingers pointing obliquely to the little finger side, but this is unusual. This is because inflamed tendon skis and muscles become unbalanced.
Rashes on the skin
There can be many different types of skin rashes at SLE. The most common is the so-called butterfly hexanthem, a reddish rash that spreads from the nostril to the cheeks. The butterfly hexagon has its name because the rash resembles the shape of a butterfly. This is also why the butterfly has become a symbol of SLE. The rash comes and goes depending on how active the disease is. Sometimes there is a clear connection that you have been in the sun. The butterfly hexanthem can either be acute or be more prolonged. When you have the long-lasting shape, it is also common for you to get a rash on the back of your hands.
Sensitive to sun
About half of all people with SLE tend to be sun sensitive. Most often, it appears as small itchy blisters on the skin. In some cases, you may get severe sun eczema. Sun can also cause general forests with symptoms from organs other than the skin. Therefore, people who have SLE should not sunbathe. Ultraviolet light in tanning beds can also be harmful.
Sometimes the hair can come off the scalp. It may appear that the hair becomes thinner or as bald spots. For the most part, the hair comes back when the disease is calmer. You may lose hair a month after a forest. This is how long it takes for hair that is damaged at the root to come off the scalp.
Ulcers in the mouth
You can also get recurring ulcers inside your mouth. It usually does not hurt, but sometimes it can hurt so much that you get hard to eat. It can take several days, sometimes up to a few weeks, for the wounds to heal.
About one-third of those with SLE sometimes have signs of renal inflammation. Such signs can be difficult to detect yourself. Therefore, it is important that you be examined regularly by a doctor.
You sometimes notice kidney inflammation yourself by kissing more than you usually do or urine foaming. You may also feel more generally ill. For example, you may feel feverish and tired than before, or you may lose weight.
In the case of kidney inflammation, the blood pressure usually rises. This can be felt as a headache, dizziness or fatigue.
Symptoms of the nervous system
You can also get symptoms from the nervous system, such as headaches, memory difficulties and learning disabilities. To feel that the memory fails is experienced by many as very uncomfortable and disturbing. But it often varies and gets better over time. Very few people experience a severe deterioration in memory and learning that persists.
Mental symptoms such as depression and anxiety are common in SLE. It can sometimes be difficult to know if the problems are due to the disease itself or if they are a reaction to the disease. Epilepsy and acute states of confusion, so-called psychoses, are uncommon but can occur. The extreme fatigue may have to do with the nervous system.
Too little blood cells
When you have SLE it is common for you to have anemia, ie too little blood cells in the blood. This applies to both red and white blood cells as well as platelets.
A low number of white blood cells, leukocytes, may be a sign that the disease is active. In rare cases, the number of white blood cells can be so low that the risk of infection increases. Anemia, that is, a low number of red blood cells, is measured as hemoglobin content, Hb, in the blood. Low Hb is common in SLE and is usually associated with prolonged inflammation. A low number of platelets, platelets, are also quite common. The task of the platelets is mainly to repair damage and prevent bleeding. It is very uncommon for the number of platelets to be so low that you are at increased risk of bleeding.
The heart sac can become inflamed
The heart sac is a thin membrane that is found around the heart. It can become inflamed when you have SLE. Then a little fluid is often formed around the heart. If you have inflammation of the heartbeat, you usually have chest pain, especially when you breathe deeply. Myocardial infarction is the most common symptom from the heart when you have SLE.
You may also get heart failure, which in rare cases can leak or swell and become so tight that it becomes difficult for the blood to pass.
Inflammation of the lungs
Like the heart, the lungs are also surrounded by a thin membrane, the lung sac. About half of all people with SLE have inflammation of the lung sac at some time. It usually causes pain in the chest, back or side when breathing.
Inflammation of the blood vessels
You can also get inflammation in the blood vessels, called vasculitis. The small vessels in the skin are usually inflamed. This is shown by the fact that you get small bumps or sores on the skin, usually on the fingers, feet or on the lower legs. Blood vessels in organs other than the skin can also become inflamed.
Many people get paler, cold fingers when cold. It’s called Raynaud’s phenomenon. When you have SLE, you can get a stronger variant of Raynaud’s phenomenon. Then your fingers not only turn pale but you can get a blue color change before they get their usual skin tone again. It is most visible if you have a light complexion. Raynaud’s phenomenon is due to the blood vessels reacting abnormally, including cold. They contract into a kind of transient cramp that causes fingers, and often even toes, to temporarily get poor blood circulation.
More than a third of all people with SLE have a special kind of antibody. These antibodies are called phospholipid antibodies, and are targeted at egg whites that attach to fats on the surface of the body’s cells. You may be at increased risk of getting a blood clot if you have such phospholipid antibodies.
When should I seek care?
Contact a health care provider if you suspect you have SLE.
What can I do for myself?
There is no way for you to medically treat SLE. But it is important that as far as possible you try to take into account your illness in daily life. For example, you should not spend more than necessary in the sun. It is very important that you protect yourself with hats, clothes and sunscreen if, after all, you have to be out in sunny weather.
SLE increases the risk of osteoporosis. You can counteract this by moving yourself daily and making sure you get enough lime and vitamin D.
Recent research also shows that people who have had SLE for a long time have an increased risk of getting cardiovascular disease. Therefore, it is extra important that you have a healthy lifestyle, that you do not smoke, that you exercise, eat a balanced diet and keep the weight.
You can get help from a physical therapist
When you are in pain, it can be difficult to keep your body moving. But there are ways that usually work for rheumatologists and are often suitable for people with SLE. Exercise in the hot water pool, walking, cycling and other types of quiet exercise work for many. Exercise can also reduce chronic fatigue. You should find appropriate ways to move around in consultation with a physical therapist.
Treatment of systemic lupus erythematosus
It is not possible to recover from SLE, but there are several ways to alleviate the problems that the disease can cause.
The basic principle for treating SLE is that the problems should be treated when they occur. The doctor can therefore reduce and possibly remove the treatment of systemic lupus erythematosus if the disease is calm and you have no problems.
Your treatment of SLE should be changed and adjusted if you experience symptoms suggestive of increased disease. To prevent new forests, preventive treatment with anti-malarial drugs is given to the vast majority of patients with SLE.
Drug treatment for SLE
The medicines used in SLE can attenuate and relieve the disease. Often you get several different drugs where some are used to alleviate pain and others to slow down the immune system’s attack on the body.
Five main groups of drugs are used to treat SLE. These groups are:
- Anti-inflammatory painkillers, also known as NSAIDs.
- Malaria Drugs.
- Cell inhibitors, cytostatic drugs.
- Biological drugs.
Other drug treatment
In addition to medicines for SLE, other medicines may sometimes be needed to treat symptoms that occur as a result of SLE, such as high blood pressure, increased blood fat levels, osteoporosis and risk of blood clots.
If the disease becomes more severe
In severe cases of SLE, internal organs such as the kidneys, nervous system, heart and lungs can be attacked. Then it is very important to have a permanent contact with a doctor who knows about the disease. The doctor can then sharpen the treatment of systemic lupus erythematosus quickly when needed.
SLE and estrogen
You should not use birth control pills containing estrogen if you have SLE, as they may contain fairly high doses of estrogen. The doses in estrogen treatment after menopause, when the woman no longer forms her own estrogen, are lower than in the birth control pills. Such treatment may be appropriate for some women who have menopausal disorders. It is common for menopause to occur early if you have SLE. Sometimes this happens even before the age of 40.
There is a risk that the disease may be aggravated by estrogen therapy. Estrogen should always be avoided if SLE disease is active and if you have had severe SLE symptoms from the kidneys, lungs or nervous system. In addition, estrogen should be avoided completely if you have an increased tendency to get a blood clot, and especially if you also have phospholipid antibodies.
So far, you should only take estrogen in consultation with the doctor treating the SLE disease.
Where should I turn?
First and foremost, you should turn to a health care center. If your doctor suspects SLE, you can get a referral to a rheumatologist, a specialist in rheumatic diseases. In some parts of the country, rheumatology and SLE are managed at internal medicine clinics.
What happens in the body?
SLE, systemic lupus erythematosus, is an autoimmune inflammatory disease that causes the immune system to attack its own body. This is called autoimmunity.
The immune system protects the body against foreign substances
In all humans, some of the immune system’s white blood cells form special proteins, called antibodies. They circulate in the blood and stick to foreign substances that do not belong to the body, such as parts of viruses and bacteria. The antibodies and the foreign substances then form so-called immune complexes. The antibodies in these immune complexes function much like flags that signal to the rest of the immune system that “here is something that does not belong”. The immune system is activated and the foreign substance is removed. This is an important part of the body’s normal defense against foreign substances.
In the body, cells are constantly dying while new ones are being formed. Usually, the dead cells are taken care of and removed by some white blood cells.
In SLE inflammation occurs
When you have SLE, the process of taking care of dead cells is disturbed. Cellular debris is perceived by the immune system as foreign and antibodies are formed. These immune complexes that contain the body’s own substances can make the immune system difficult to remove, and they can instead get stuck in various organs in the body. The immune system attacks when the body, inflammation occurs and the organs that are attacked can be damaged.
SLE goes into forest
Sometimes the disease is more active and sometimes it is more calm. When it is active you say that you have got a forest. Such forests usually alternate with periods of little or no evidence of disease.
Individuals have a disease that is more or less active all the time.
If you have ever had the disease, there is always a risk that you may get new forests.
SLE is a collective term
Since it is not known why you get the disease, what is called SLE is really more of a collective name for a variety of symptoms. It is possible that SLE is in fact several different diseases.
The disease is to some extent hereditary
About one in ten people with SLE have a close relative who also has the disease. The disease thus appears to be hereditary to some extent. But heredity alone cannot explain why you get sick. It seems, for example, that solar radiation (UV light), certain drugs, infections and smoking may also play a role.
More common in women
Female sex hormones are important for the risk of developing SLE and nine out of ten with the disease are women. Most women who get the disease are of child-bearing age, that is, the period in life when women have the highest levels of female sex hormones.
Children and the elderly can also get the disease. In these groups it is more evenly distributed between the sexes.
Other variants of SLE
There is a skin disease called discoid lupus erythematosus, DLE, which is related to SLE. The disease means that you get a rash that can sit everywhere, but is most common on the cheeks and other areas of the skin that are often exposed to the sun. The rashes look like blushing slightly elevated changes. Sometimes they can scramble a little. DLE produces changes that go deep into the skin, and you can get lasting scars as they heal. DLE rash may be part of SLE, but you can get DLE without any other signs of SLE. DLE is then treated by dermatologists.
Subacute cutaneous lupus, SCLE, is a skin disease that can cause patchy, often intertwined rashes, especially on the abdomen and back. The rash usually heals without scarring.
At the beginning of the course of the illness you may receive different information from different doctors about the disease you have. The reason is that SLE has many different symptoms and can be similar to many other diseases. In case of suspicion of SLE, you should meet a rheumatologist for assessment, ie a specialist in rheumatic diseases. In some cases, it may take time before you are diagnosed with SLE.
There is no single blood test to determine if you have SLE or not. When a doctor diagnoses SLE, it is based on symptoms typical of SLE. The diagnosis is supported by changes in the immune system, for example, that there are certain antibodies in the blood.
The doctor often does the following:
- Ask about past illnesses and doctor contacts and ask targeted questions about symptoms of rheumatic system disease, SLE.
- Do a thorough body examination and examination of skin and joints.
- Takes regular blood tests such as lowering and blood status to see if there is inflammation in the body.
- Takes a blood test to see if there are typical antibodies to SLE in the blood. ANA is a collective name for antibodies directed against the nucleus of the cells. Almost everyone with SLE has such nuclear antibodies. A subset of ANA are antibodies directed against the genetic mass, so-called DNA antibodies. They are found in about half of all people who have SLE.
- Request that you submit a urine sample.
Further examinations like samples, x-rays and biopsies are done depending on the symptoms you have. In case of inflammation of the heartbeat, the doctor can use ultrasound, echocardiography to see if there is fluid in the heartbeat. Inflammation of the pulmonary sac is most often examined by x-ray, and sometimes, but not always, a small ejection of fluid is seen in the pulmonary sac.
The doctor may take a small tissue sample, a biopsy, to find out if the blood vessels are inflamed. Biopsies are taken from the places where you have symptoms, usually from the skin. Skin biopsies are taken with a special knife after the skin has been locally anesthetized. The tissue sample is then examined in a microscope to see if the vessels are inflamed or not.
The doctor will check for urine if you have blood or proteins in your urine. If you have signs of kidney inflammation, it must be investigated as soon as possible with a so-called renal biopsy.
When you undergo a kidney biopsy, you are hospitalized for 24 hours. The examination itself is done in the X-ray department. You must lie down. To get the best biopsy possible, the doctor first locates the kidneys using ultrasound, which is a completely painless examination. The ultrasound images are reviewed on a TV screen throughout the investigation. You get anesthesia in the skin and get a stick with a thin needle, and the doctor takes the needle out with a small sample from the kidney. In some cases, you may need to get multiple sticks. By analyzing the sample in a microscope, it is then possible to determine what type of renal inflammation is involved and whether it needs to be treated.
The sting itself can hurt but the pain is usually short-lived. After the examination, lie on your back for a few hours to avoid bleeding. You are usually allowed to stay in the hospital overnight for observation.
Getting a sick message
SLE is a chronic disease that can involve limitations in life, although it can be mild at times. It usually takes time to understand what it means to have been diagnosed as SLE. In addition, the disease manifests itself in different ways, and it is difficult to know how it will develop.
It is important that you know as much as possible about the disease. The questions often come when you have come home from the doctor. Therefore, it may be wise to make a list of questions and considerations to bring to the doctor at the next visit.
The Rheumatic Society also provides information and organizes courses where you can meet others who have SLE. It can be a good support.
Important to tell relatives and employers
When you have SLE, it is very common for you to experience a scattered, unclear pain in joints and muscles. It is also common for you to feel very tired.
You can’t see how tired someone is on the outside. Therefore, it is important that relatives and close friends get good information about the disease and its symptoms, so that they understand that fatigue is part of the disease.
Most people who have SLE can continue to work. But you can get so tired that it’s hard to cope. It is important that you tell your employer about the illness so that you can adapt the work tasks according to how you feel. Often it is good to have some flexibility in working hours and many times part-time work is a good solution. You may sometimes need to be on sick leave when you have a forest.
Pregnancy and SLE
You should always consult your doctor before planning a pregnancy.
Most women who have SLE can become pregnant and give birth to babies, but it is good if you can avoid becoming pregnant just when the disease is active. Preferably, the disease should have been inactive 4-6 months before becoming pregnant. You should be especially careful if you have previously had a blood clot, have active kidney inflammation or phospholipid antibodies in the blood. Phospholipid antibodies can cause blood clots and vascular changes in the placenta, which can cause the fetus to have poor blood supply. This increases the risk of miscarriage.
Blood thinning drugs are usually used during pregnancy if you have had a blood clot or pregnancy complication before, and blood tests show that you have phospholipid antibodies.
Some women with SLE have antibodies of a type that are usually referred to as SS A or B antibodies, Sjögrens Syndrome A or B. A subgroup of the antibodies can pass over to the baby and affect the heart rhythm. The child can also get transient symptoms from the skin, liver and blood, called neonatal lupus. Therefore, if you have SLE and become pregnant, your doctor should check if you have these antibodies with a blood test. In this case, the baby’s heart rhythm should be checked a little more often at a specialist maternity clinic.
It is possible to be treated with, for example, cortisone if the disease becomes more active during pregnancy. This should always be done in consultation with a SLE-knowledgeable doctor.