Lupus 100
Answers to the most important questions about lupus, verified by world renowned lupus doctors
Lupus
IN
100 QUESTIONS
Answers to the most important questions about lupus, verified by world renowned lupus doctors
The 100 Questions Have Been Split Into The Following Sections
BETTER UNDERSTANDING LUPUS AND ITS ISSUES
What is the role of our immune system?
The immune system is a network of cells that organise themselves to defend our body against external organisms, such as microbes.
An autoimmune disease is the consequence of the hyperactivity of an immune system that goes beyond its role of defence against external agents and attack the body's own cells.
The term lupus which means "wolf" in Latin has several supposed origins. This term was originally used to describe a skin condition that is reminiscent of wolf bites.
How does the disease develop?
Lupus is a very particular disorder of the immune system. The abnormal activity of our body's defence cells can lead to self-aggression that can reach many organs including the skin, joints, kidney, heart, and/or brain.
There are 2 forms of lupus:
spontaneous lupus, which occurs without known or recognised inducing factors, and induced lupus, which is caused by exposure to environmental agents, including certain drugs.
Neonatal lupus is a rare complication associated with the presence of certain autoantibodies in the mother: anti-SSA (also called anti-Ro) or SSB (or anti-La) that will affect the foetus or newborn. The mother sometimes has lupus or Sjögren syndrome.
Yes. It is a rare disease that occurs much less frequently in children than in adults. Although rare, it is the second most common rheumatic disease in childhood.
Antiphospholipid (antibody) syndrome (APS) is an autoimmune "disease" characterised clinically by the occurrence of blood clots or miscarriages, and biologically by the presence of antibodies to phospholipids.
Lupus does not have a "cause", but is probably explained by several "causes", which are combined like pieces of a puzzle.
Lupus affects women much more often than men (sex ratio: 9 women for each man in adulthood), like most autoimmune diseases. This female predominance can be explained in different ways:
If the prevalence (or frequency) of lupus is greater in women (nearly 90% of patients), 1 patient out of 10 is a man.
Yes, the clinical expression of systemic lupus can vary depending on ethnicity. It is often more severe in black-skinned populations (especially Caribbean and African-American), Hispanics, Asians and Native Americans.
Stress can worsen lupus, but it does not cause it.
A "stressful" event in life may boost a lupus flare-up, but stress alone cannot cause the apparition of a lupus.
No. Lupus is not contagious. There is no increase in the frequency of the disease in the spouses and/or in the acquaintances of lupus patients. In practice, there are therefore no precautionary measures to be taken.
YES, several autoimmune diseases can be associated with lupus. A common genetic terrain is probably at the origin of these associations.
Yes, several autoimmune diseases can be associated with systemic lupus. A common genetic terrain is probably the cause of these associations.
Lupus usually begins with a series of signs that gradually emerge, in a few days or weeks: fatigue, sometimes fever, joint pain, skin signs, chest pain, shortness of breath...
Because of its very high heterogeneity, lupus often requires substantial experience to be diagnosed, considering all aspects of the symptoms and biological parameters.
The diagnosis of lupus depends a lot on the manifestations that reveal the disease. The purpose of the necessary examinations is, on the one hand,
An "autoimmune" response (such as in lupus) can result in the production of abnormal antibodies, called autoantibodies.
Anti-DNA antibodies are a subgroup of antinuclear antibodies detected by specific identification tests. These tests are essentially immuno-enzymatic, called ELISA (Enzyme Linked Immuno Sorbent Assay) and Farr test.
What is the complement?
The serum complement is a set of small proteins called C1, C2, C3, C4... (C for complement) present in the blood and tissues.
YES. What is anemia?
Anemia is a drop in red blood cells, which results in a reduction in hemoglobin levels. Hemoglobin is an oxygen transporter that is the essential constituent of red blood cells.
YES. Lupus can lower white blood cells.
What is a drop in white blood cells (called leukopenia)?
We can distinguish two types of white blood cells on the blood count, called a hemogram:
YES.
What is a platelet count drop (called thrombocytopenia)?
Platelets are tiny disc shaped pieces of cells that circulate in the blood and help blood clotting, when they assemble like the bricks of a wall to block bleeding.
Without treatment, lupus progresses in flares, alternating with phases of relative calm. Unfortunately, this "natural" course, without proper treatment, is likely to lead not only to irreversible damage to the organs affected by the disease...
There are 3 types of skin involvement specific to lupus, aggravated by sun exposure:
Acute cutaneous lupus, which is a red rash that appears symmetrically on the nose and cheekbones, the neckline, or limbs..
Yes, lupus can progress to kidney damage but it is quite rare, except in children.
The forms of lupus with a mainly cutaneous and articular onset are common.
About 20-40% of adult lupus patients and 30-80% of children develop kidney damage. This is more common in Asians and patients of African descent than in Caucasians.
Most often, lupus that began in childhood continues to be active into adulthood and requires treatment and medical supervision. Current treatments generally help control lupus well.
NO, it is difficult to predict with certainty the course of lupus. Knowledge of the disease has taught us that there are "benign" forms...
Strictly speaking, there is today no treatment that eradicates lupus “forever”, but in most cases, it is possible to treat lupus in such a way that the person can live a normal life, with a lupus that is “asleep” for prolonged periods.
Fatigue is commonly reported during most chronic diseases. It affects almost 9 out of 10 lupus patients.
Diagnosis can take a very long time for some people because lupus is so complex and imitates so many other possible diseases. Over time, some people can become so frustrated by the absence of a diagnosis while enduring pain, fatigue and many other symptoms that naming the disease comes as a relief.
The pain caused by lupus has various causes. In lupus, there is frequently joint pain (arthralgia or arthritis) and muscle pain (myalgia or myositis).
Most lupus give joint pain (arthralgia), more rarely joint swelling (arthritis). Usually, there is no joint deformation in lupus, but several abnormalities can be observed.
Raynaud’s phenomenon, or syndrome, is a transient blood circulation disorder in the extremities, affecting the fingers, sometimes the toes,
A dry syndrome can evoke an autoimmune disease of the secretion glands (exocrines): Sjögren syndrome. A "dry syndrome" is quite common during lupus.
Hair loss (in medical terms "alopecia"), usually spread over the entire scalp, sometimes accompanies the activity of lupus.
In most cases, digestive disorders are unrelated to lupus. The digestive tract is rarely affected during this disease. Digestive disorders are most often related to medications, such as taking anti-inflammatories...
It's rarely directly related to the disease activity. Nevertheless, patients with lupus often complain of headaches. Most often, these are so-called "tension" headaches caused by stress and not directly related to lupus (except that stress can be related to having a chronic disease).
Yes. But most often it is an antiphospholipid syndrome associated with lupus that is to be blamed. This syndrome is an autoimmune disorder characterised by the formation of blood clots in the venous (phlebitis) or arterial network.
It's rare. A stroke related to a clot clogging an artery in the brain (thrombosis) can complicate lupus. This thrombosis usually reveals an antiphospholipid syndrome associated with lupus...
YES, the lymph nodes may increase in size (adenomegaly or lymphadenopathy) when lupus is active. These are inflammatory lymph nodes that do not warrant special treatment.
The treatment of lupus involves several therapeutic means:
Drugs (see Annex 4): these are molecules whose purpose is to decrease, or modulate, the hyperactivity of the immune system, as well as the inflammation.
Short-term
It is about ensuring daily comfort and combatting the signs of lupus activity, especially preserving the functions of vital organs in severe flares....
Several very different aspects need to be considered.
Some drugs are potential inducers of lupus. In genetically predisposed people, their prolonged intake can trigger induced lupus, which most often heals after stopping the drug.
A background treatment is a treatment that will act on the immune system and lead to a modification of the evolution of the lupus disease in the long term.
Cortisone is a hormone naturally produced in the body by glands located just above the kidneys, called adrenal glands. This hormone has a powerful and immediate anti-inflammatory and pain-relieving effect.
Cortisone can be administered orally (per os) using tablets, by intramuscular or intravenous injection (direct or perfusion), locally by joint infiltration, or finally by applying it directly to the skin (percutaneously) in relation to the joint (gel, cream ...) or on certain lupus rashes...
The risks are related to the dose accumulated in the body and the nature of the product used. In addition, depending on the individual, there is a greater or lesser tolerance. Some people will tolerate high doses well, while others will have side effects, even at low doses...
Preventing high blood pressure:
To avoid high blood pressure, a "salt-free" diet is sometimes suggested in case of corticosteroid therapy. In fact, the "low-salt" diet is only for patients receiving high doses of cortisone (>15 mg/d). The simple eviction of salty foods (peanuts, chips ...) is usually sufficient. In the other (most frequent) cases, no salt restriction is necessary.
In children, prolonged general corticosteroid therapy at doses greater than 0.3 mg/kg/d causes slower growth, in addition to other side effects common to adults and children.
Cortisone is an excellent anti-inflammatory drug, but it exposes one to a number of so-called "metabolic" risks, such as muscle loss, osteoporosis and "fat abnormalities” (dyslipidemia). To combat these complications, several dietary measures are necessary.
NO, this temptation must be resisted by 2 rules:
First simple rule: never stop cortisone abruptly.
Second rule: do not consider that these treatments are harmless and increase, or decrease, the dose without medical advice.
Yes. Hydroxychloroquine/chloroquine, which belongs to the class of synthetic antimalarials, is a very important drug for the treatment of lupus. Its mechanism of action is poorly understood, but it is thought to intervene at several levels of the immune response, which it helps to "re-educate".
Hydroxychloroquine/chloroquine is a well-tolerated drug. Hydroxychloroquine is recommended at a dose not exceeding 5 mg/kg of real body weight over a long period of treatment to reduce ocular side effects.
As its name suggests, immunosuppressive therapy aims to decrease the activity of the immune system. Indeed, during lupus, we know that there is an "hyperactivation" of the immune system, including certain white blood cells called lymphocytes.
Immunosuppressants have multiple side effects, some of which differ depending on the immunosuppressant. Always refer to the information sheet placed in the medicine packet, and ask your doctor for advice if you have any doubt.
The term biotherapy is replaced by biomedicine or even simply “biologics”. This is a drug produced by living cells (hence bio) that are programmed to synthesise an antibody (monoclonal) or a fusion protein.
In lupus, in the case of thrombosis (clot in a venous or arterial vessel), especially in the context of an antiphospholipid antibody syndrome, an anticoagulant treatment may be prescribed.
control the flare of the disease and put lupus into remission.
correct all the usual causes of fatigue. For example, anemia or lack of iron, which are very common in women (one in three women of childbearing age)....
The main recommendation is to protect yourself from the cold:
Dress warmly: the multilayer system fosters the maintenance of a good body temperature. An under layer keeps the body dry and should accelerate the evacuation of sweat during exercise (cotton is not the most suitable because it does not dry very quickly)....
The relief of joint pain, arthralgia or arthritis (pain + joint swelling) is primarily based on the prescription by your doctor of nonsteroidal anti-inflammatory drugs (after checking for the absence of contraindications....
Corticosteroid ointments (topical) can be used but they may induce permanent skin atrophy. In case of persistence of active skin lesions, it is possible to enhance the local effectiveness of cortisone ointments through an occlusive dressing....
No. This is not scientifically demonstrated. Homeopathic treatment cannot replace usual treatment. However, if it is given in addition to that treatment, it does not pose any problem of interference...
Acupuncture, homeopathy and alternative medicine have no demonstrated efficacy during lupus.
Acupuncture and mesotherapy (consisting of performing multiple subcutaneous injections of drugs) can sometimes bring relief, but they will not allow the control of the disease....
Thermal cures and thalassotherapy have no proven effectiveness on the course of lupus but they can improve well-being. In some countries, some disorders (joint, muscular...) can justify a request to the social insurance fund or medical insurance, together with a medical prescription.
YES, quitting smoking is essential when you have lupus. Tobacco has been blamed for reducing the effectiveness of synthetic antimalarials, even if it does not alter circulating blood levels of these products.
Yes. Good food hygiene (a balanced diet) is necessary in all inflammatory diseases, and even for anyone! As a starting point, the so-called Mediterranean diet provides benefits which are demonstrated in several rheumatic diseases.
NO, there is no clear evidence of more allergic reactions in lupus, but several situations can be confused with an allergy.
Yes. Sport, or physical activity, can and should be practiced as often as possible. Regular practice of sport is an essential element of well-being for the body and mind. Physical activity also has a beneficial effect on fatigue.
No. Sun exposure is strongly discouraged when you have lupus. Protection from the sun is necessary for all patients, even those with lupus who have never had cutaneous signs.When exposed to sunlight, the skin of lupus patients may overreact.
YES, it is absolutely possible to have surgery when you have lupus but there are 3 important precautions to know.
Lupus and the drugs prescribed to treat it expose patients to an increased risk of gynecological complications. Gynecological follow-up is very important for these patients.
Yes. Corticosteroids and immunosuppressive drugs promote infections. It is advisable to have excellent dental hygiene. Regular visits to the dentist are therefore recommended.
Patients with systemic autoimmune diseases sometimes ask themselves the question of the possibility of donating their organs. This is an important issue that is addressed at national level by Biomedicine Agencies.
NO, even though the blood of lupus patients is no less "good" than that of the general population, as a precautionary principle, all autoimmune diseases with autoantibodies are considered a contraindication to blood donation...
Yes. Lupus does not contraindicate travel, provided you protect yourself sufficiently from the sun when you reach your sunny destination! All modes of transport are possible.
The parasite causing malaria is increasingly resistant to antimalarials. It is necessary to know the classification of the country concerned with regard to resistance to antimalarials, and in particular to chloroquine.
During lupus, vaccinations are most often recommended, but with some precautions.
Getting vaccinated should be avoided as much as possible during a flare of the disease but is possible if necessary.
YES, there is no reason why lupus should prevent you from having a normal sex life... whether you are a woman or a man!
Aside from barrier methods of contraception (condoms, diaphragms etc.,) there are many different contraceptive methods.
NO, Lupus is not hereditary in the vast majority of cases, although it is partly explained by genetic factors. The risk of transmitting the disease to your children is therefore very low. Children of a lupus patient have less than a 1% risk of developing the disease
YES, it is most often possible to have children, but on several conditions:
In general, lupus patients have no difficulty getting pregnant. Some patients who have received high doses of cyclophosphamide– a very important drug in the treatment of severe lupus (kidney or neurological damage) – may, however, have premature menopause
The consequences of lupus on pregnancy are essentially an increased risk of:
> Recurrent early spontaneous miscarriages or fetal death (associated with the presence of antiphospholipid antibodies), prematurity or hypotrophy (low birth weight).
In vitro fertilization is often accompanied by hormonal treatments that can "activate" lupus and justify temporarily strengthening its treatment.
YES, if needed. It can help you during difficult times. Lupus is a chronic disease that can be "difficult" to live with. This condition leads to fatigue, pain and above all a significant psychological impact.
What is occupational therapy?
Lupus is a chronic disease, which can be punctuated by flares, but whose main problem is fatigue.
The transfer of care from the pediatric team to the team of adult doctors needs to be prepared.
Lupus patients most often keep a professional activity. Lupus disease sometimes forces you to redefine the professional project or possibly stop working, especially because of fatigue.
Both patients and doctors are often frustrated by the lack of time they have during hospital appointments. Hospitals in a few countries allow for double-length appointments. Also, several months can pass from one appointment to the next. It is therefore very important to prepare for your visit to make the best of the limited time available.
The role of the social worker is to intervene with individuals, families and groups to improve living conditions and prevent social, medico-social, economic and cultural difficulties.
Everyone today talks about Therapeutic Patient Education (TPE), the subject is fashionable. But what can TPE bring for people with systemic lupus? According to the WHO, "therapeutic patient education aims to help patients acquire or maintain the skills they need to best manage their lives with a chronic disease."
A research protocol is a study whose objective is to improve the knowledge of the frequency of occurrence, mechanisms and treatment of a disease.
There is still a lot that is unknown about lupus, and all patients are encouraged to take an active role in the fight to reduce the impact of lupus on the lives of people living with it. Everyone can help: this can be by supporting research, or by helping the community.
Every year, multiple projects are initiated to better understand lupus, its impact, and potential treatments on this discovery path. To progress, most of these projects require the co-working of multiple experts with different skills, experience, and knowledge.
ERN ReCONNET is the name of the European Reference Network that takes care of systemic lupus and other connective tissue diseases.
The French “Filière des Maladies Auto-immunes et Auto-inflammatoires Rares” (FAI2R: https://www.fai2r.org) is a health network dedicated for patients with rare autoimmune and inflammatory diseases.
Living with lupus can be a bumpy road, on which traveling alone is hard. In almost each European country, people living with lupus and their close relatives have created patient organisations, where they can share their experience, obtain quality information, raise awareness of the disease, support research programmes, and offer a helping hand to those (often newly diagnosed) that face difficulties.
BETTER UNDERSTANDING LUPUS AND ITS ISSUES
What is the role of our immune system?
The immune system is a network of cells that organise themselves to defend our body against external organisms, such as microbes.
An autoimmune disease is the consequence of the hyperactivity of an immune system that goes beyond its role of defence against external agents and attack the body's own cells.
The term lupus which means "wolf" in Latin has several supposed origins. This term was originally used to describe a skin condition that is reminiscent of wolf bites.
How does the disease develop?
Lupus is a very particular disorder of the immune system. The abnormal activity of our body's defence cells can lead to self-aggression that can reach many organs including the skin, joints, kidney, heart, and/or brain.
There are 2 forms of lupus:
spontaneous lupus, which occurs without known or recognised inducing factors, and induced lupus, which is caused by exposure to environmental agents, including certain drugs.
Neonatal lupus is a rare complication associated with the presence of certain autoantibodies in the mother: anti-SSA (also called anti-Ro) or SSB (or anti-La) that will affect the foetus or newborn. The mother sometimes has lupus or Sjögren syndrome.
Yes. It is a rare disease that occurs much less frequently in children than in adults. Although rare, it is the second most common rheumatic disease in childhood.
Antiphospholipid (antibody) syndrome (APS) is an autoimmune "disease" characterised clinically by the occurrence of blood clots or miscarriages, and biologically by the presence of antibodies to phospholipids.
Lupus does not have a "cause", but is probably explained by several "causes", which are combined like pieces of a puzzle.
Lupus affects women much more often than men (sex ratio: 9 women for each man in adulthood), like most autoimmune diseases. This female predominance can be explained in different ways:
If the prevalence (or frequency) of lupus is greater in women (nearly 90% of patients), 1 patient out of 10 is a man.
Yes, the clinical expression of systemic lupus can vary depending on ethnicity. It is often more severe in black-skinned populations (especially Caribbean and African-American), Hispanics, Asians and Native Americans.
Stress can worsen lupus, but it does not cause it.
A "stressful" event in life may boost a lupus flare-up, but stress alone cannot cause the apparition of a lupus.
No. Lupus is not contagious. There is no increase in the frequency of the disease in the spouses and/or in the acquaintances of lupus patients. In practice, there are therefore no precautionary measures to be taken.
YES, several autoimmune diseases can be associated with lupus. A common genetic terrain is probably at the origin of these associations.
Yes, several autoimmune diseases can be associated with systemic lupus. A common genetic terrain is probably the cause of these associations.
BETTER UNDERSTANDING HOW LUPUS EXPRESSES ITSELF
Lupus usually begins with a series of signs that gradually emerge, in a few days or weeks: fatigue, sometimes fever, joint pain, skin signs, chest pain, shortness of breath...
Because of its very high heterogeneity, lupus often requires substantial experience to be diagnosed, considering all aspects of the symptoms and biological parameters.
The diagnosis of lupus depends a lot on the manifestations that reveal the disease. The purpose of the necessary examinations is, on the one hand,
An "autoimmune" response (such as in lupus) can result in the production of abnormal antibodies, called autoantibodies.
Anti-DNA antibodies are a subgroup of antinuclear antibodies detected by specific identification tests. These tests are essentially immuno-enzymatic, called ELISA (Enzyme Linked Immuno Sorbent Assay) and Farr test.
What is the complement?
The serum complement is a set of small proteins called C1, C2, C3, C4... (C for complement) present in the blood and tissues.
YES. What is anemia?
Anemia is a drop in red blood cells, which results in a reduction in hemoglobin levels. Hemoglobin is an oxygen transporter that is the essential constituent of red blood cells.
YES. Lupus can lower white blood cells.
What is a drop in white blood cells (called leukopenia)?
We can distinguish two types of white blood cells on the blood count, called a hemogram:
YES.
What is a platelet count drop (called thrombocytopenia)?
Platelets are tiny disc shaped pieces of cells that circulate in the blood and help blood clotting, when they assemble like the bricks of a wall to block bleeding.
Without treatment, lupus progresses in flares, alternating with phases of relative calm. Unfortunately, this "natural" course, without proper treatment, is likely to lead not only to irreversible damage to the organs affected by the disease...
There are 3 types of skin involvement specific to lupus, aggravated by sun exposure:
Acute cutaneous lupus, which is a red rash that appears symmetrically on the nose and cheekbones, the neckline, or limbs..
Yes, lupus can progress to kidney damage but it is quite rare, except in children.
The forms of lupus with a mainly cutaneous and articular onset are common.
About 20-40% of adult lupus patients and 30-80% of children develop kidney damage. This is more common in Asians and patients of African descent than in Caucasians.
Most often, lupus that began in childhood continues to be active into adulthood and requires treatment and medical supervision. Current treatments generally help control lupus well.
NO, it is difficult to predict with certainty the course of lupus. Knowledge of the disease has taught us that there are "benign" forms...
Strictly speaking, there is today no treatment that eradicates lupus “forever”, but in most cases, it is possible to treat lupus in such a way that the person can live a normal life, with a lupus that is “asleep” for prolonged periods.
Fatigue is commonly reported during most chronic diseases. It affects almost 9 out of 10 lupus patients.
Diagnosis can take a very long time for some people because lupus is so complex and imitates so many other possible diseases. Over time, some people can become so frustrated by the absence of a diagnosis while enduring pain, fatigue and many other symptoms that naming the disease comes as a relief.
The pain caused by lupus has various causes. In lupus, there is frequently joint pain (arthralgia or arthritis) and muscle pain (myalgia or myositis).
Most lupus give joint pain (arthralgia), more rarely joint swelling (arthritis). Usually, there is no joint deformation in lupus, but several abnormalities can be observed.
Raynaud’s phenomenon, or syndrome, is a transient blood circulation disorder in the extremities, affecting the fingers, sometimes the toes,
A dry syndrome can evoke an autoimmune disease of the secretion glands (exocrines): Sjögren syndrome. A "dry syndrome" is quite common during lupus.
Hair loss (in medical terms "alopecia"), usually spread over the entire scalp, sometimes accompanies the activity of lupus.
In most cases, digestive disorders are unrelated to lupus. The digestive tract is rarely affected during this disease. Digestive disorders are most often related to medications, such as taking anti-inflammatories...
It's rarely directly related to the disease activity. Nevertheless, patients with lupus often complain of headaches. Most often, these are so-called "tension" headaches caused by stress and not directly related to lupus (except that stress can be related to having a chronic disease).
Yes. But most often it is an antiphospholipid syndrome associated with lupus that is to be blamed. This syndrome is an autoimmune disorder characterised by the formation of blood clots in the venous (phlebitis) or arterial network.
It's rare. A stroke related to a clot clogging an artery in the brain (thrombosis) can complicate lupus. This thrombosis usually reveals an antiphospholipid syndrome associated with lupus...
YES, the lymph nodes may increase in size (adenomegaly or lymphadenopathy) when lupus is active. These are inflammatory lymph nodes that do not warrant special treatment.
BETTER UNDERSTANDING HOW TO MANAGE LUPUS
The treatment of lupus involves several therapeutic means:
Drugs (see Annex 4): these are molecules whose purpose is to decrease, or modulate, the hyperactivity of the immune system, as well as the inflammation.
Short-term
It is about ensuring daily comfort and combatting the signs of lupus activity, especially preserving the functions of vital organs in severe flares....
Several very different aspects need to be considered.
Some drugs are potential inducers of lupus. In genetically predisposed people, their prolonged intake can trigger induced lupus, which most often heals after stopping the drug.
A background treatment is a treatment that will act on the immune system and lead to a modification of the evolution of the lupus disease in the long term.
Cortisone is a hormone naturally produced in the body by glands located just above the kidneys, called adrenal glands. This hormone has a powerful and immediate anti-inflammatory and pain-relieving effect.
Cortisone can be administered orally (per os) using tablets, by intramuscular or intravenous injection (direct or perfusion), locally by joint infiltration, or finally by applying it directly to the skin (percutaneously) in relation to the joint (gel, cream ...) or on certain lupus rashes...
The risks are related to the dose accumulated in the body and the nature of the product used. In addition, depending on the individual, there is a greater or lesser tolerance. Some people will tolerate high doses well, while others will have side effects, even at low doses...
Preventing high blood pressure:
To avoid high blood pressure, a "salt-free" diet is sometimes suggested in case of corticosteroid therapy. In fact, the "low-salt" diet is only for patients receiving high doses of cortisone (>15 mg/d). The simple eviction of salty foods (peanuts, chips ...) is usually sufficient. In the other (most frequent) cases, no salt restriction is necessary.
In children, prolonged general corticosteroid therapy at doses greater than 0.3 mg/kg/d causes slower growth, in addition to other side effects common to adults and children.
Cortisone is an excellent anti-inflammatory drug, but it exposes one to a number of so-called "metabolic" risks, such as muscle loss, osteoporosis and "fat abnormalities” (dyslipidemia). To combat these complications, several dietary measures are necessary.
NO, this temptation must be resisted by 2 rules:
First simple rule: never stop cortisone abruptly.
Second rule: do not consider that these treatments are harmless and increase, or decrease, the dose without medical advice.
Yes. Hydroxychloroquine/chloroquine, which belongs to the class of synthetic antimalarials, is a very important drug for the treatment of lupus. Its mechanism of action is poorly understood, but it is thought to intervene at several levels of the immune response, which it helps to "re-educate".
Hydroxychloroquine/chloroquine is a well-tolerated drug. Hydroxychloroquine is recommended at a dose not exceeding 5 mg/kg of real body weight over a long period of treatment to reduce ocular side effects.
As its name suggests, immunosuppressive therapy aims to decrease the activity of the immune system. Indeed, during lupus, we know that there is an "hyperactivation" of the immune system, including certain white blood cells called lymphocytes.
Immunosuppressants have multiple side effects, some of which differ depending on the immunosuppressant. Always refer to the information sheet placed in the medicine packet, and ask your doctor for advice if you have any doubt.
The term biotherapy is replaced by biomedicine or even simply “biologics”. This is a drug produced by living cells (hence bio) that are programmed to synthesise an antibody (monoclonal) or a fusion protein.
In lupus, in the case of thrombosis (clot in a venous or arterial vessel), especially in the context of an antiphospholipid antibody syndrome, an anticoagulant treatment may be prescribed.
control the flare of the disease and put lupus into remission.
correct all the usual causes of fatigue. For example, anemia or lack of iron, which are very common in women (one in three women of childbearing age)....
The main recommendation is to protect yourself from the cold:
Dress warmly: the multilayer system fosters the maintenance of a good body temperature. An under layer keeps the body dry and should accelerate the evacuation of sweat during exercise (cotton is not the most suitable because it does not dry very quickly)....
The relief of joint pain, arthralgia or arthritis (pain + joint swelling) is primarily based on the prescription by your doctor of nonsteroidal anti-inflammatory drugs (after checking for the absence of contraindications....
Corticosteroid ointments (topical) can be used but they may induce permanent skin atrophy. In case of persistence of active skin lesions, it is possible to enhance the local effectiveness of cortisone ointments through an occlusive dressing....
No. This is not scientifically demonstrated. Homeopathic treatment cannot replace usual treatment. However, if it is given in addition to that treatment, it does not pose any problem of interference...
Acupuncture, homeopathy and alternative medicine have no demonstrated efficacy during lupus.
Acupuncture and mesotherapy (consisting of performing multiple subcutaneous injections of drugs) can sometimes bring relief, but they will not allow the control of the disease....
Thermal cures and thalassotherapy have no proven effectiveness on the course of lupus but they can improve well-being. In some countries, some disorders (joint, muscular...) can justify a request to the social insurance fund or medical insurance, together with a medical prescription.
BETTER UNDERSTANDING HOW TO LIVE WITH LUPUS
YES, quitting smoking is essential when you have lupus. Tobacco has been blamed for reducing the effectiveness of synthetic antimalarials, even if it does not alter circulating blood levels of these products.
Yes. Good food hygiene (a balanced diet) is necessary in all inflammatory diseases, and even for anyone! As a starting point, the so-called Mediterranean diet provides benefits which are demonstrated in several rheumatic diseases.
NO, there is no clear evidence of more allergic reactions in lupus, but several situations can be confused with an allergy.
Yes. Sport, or physical activity, can and should be practiced as often as possible. Regular practice of sport is an essential element of well-being for the body and mind. Physical activity also has a beneficial effect on fatigue.
No. Sun exposure is strongly discouraged when you have lupus. Protection from the sun is necessary for all patients, even those with lupus who have never had cutaneous signs.When exposed to sunlight, the skin of lupus patients may overreact.
YES, it is absolutely possible to have surgery when you have lupus but there are 3 important precautions to know.
Lupus and the drugs prescribed to treat it expose patients to an increased risk of gynecological complications. Gynecological follow-up is very important for these patients.
Yes. Corticosteroids and immunosuppressive drugs promote infections. It is advisable to have excellent dental hygiene. Regular visits to the dentist are therefore recommended.
Patients with systemic autoimmune diseases sometimes ask themselves the question of the possibility of donating their organs. This is an important issue that is addressed at national level by Biomedicine Agencies.
NO, even though the blood of lupus patients is no less "good" than that of the general population, as a precautionary principle, all autoimmune diseases with autoantibodies are considered a contraindication to blood donation...
Yes. Lupus does not contraindicate travel, provided you protect yourself sufficiently from the sun when you reach your sunny destination! All modes of transport are possible.
The parasite causing malaria is increasingly resistant to antimalarials. It is necessary to know the classification of the country concerned with regard to resistance to antimalarials, and in particular to chloroquine.
During lupus, vaccinations are most often recommended, but with some precautions.
Getting vaccinated should be avoided as much as possible during a flare of the disease but is possible if necessary.
YES, there is no reason why lupus should prevent you from having a normal sex life... whether you are a woman or a man!
Aside from barrier methods of contraception (condoms, diaphragms etc.,) there are many different contraceptive methods.
NO, Lupus is not hereditary in the vast majority of cases, although it is partly explained by genetic factors. The risk of transmitting the disease to your children is therefore very low. Children of a lupus patient have less than a 1% risk of developing the disease
YES, it is most often possible to have children, but on several conditions:
In general, lupus patients have no difficulty getting pregnant. Some patients who have received high doses of cyclophosphamide– a very important drug in the treatment of severe lupus (kidney or neurological damage) – may, however, have premature menopause
The consequences of lupus on pregnancy are essentially an increased risk of:
> Recurrent early spontaneous miscarriages or fetal death (associated with the presence of antiphospholipid antibodies), prematurity or hypotrophy (low birth weight).
In vitro fertilization is often accompanied by hormonal treatments that can "activate" lupus and justify temporarily strengthening its treatment.
YES, if needed. It can help you during difficult times. Lupus is a chronic disease that can be "difficult" to live with. This condition leads to fatigue, pain and above all a significant psychological impact.
What is occupational therapy?
Lupus is a chronic disease, which can be punctuated by flares, but whose main problem is fatigue.
The transfer of care from the pediatric team to the team of adult doctors needs to be prepared.
Lupus patients most often keep a professional activity. Lupus disease sometimes forces you to redefine the professional project or possibly stop working, especially because of fatigue.
Both patients and doctors are often frustrated by the lack of time they have during hospital appointments. Hospitals in a few countries allow for double-length appointments. Also, several months can pass from one appointment to the next. It is therefore very important to prepare for your visit to make the best of the limited time available.
The role of the social worker is to intervene with individuals, families and groups to improve living conditions and prevent social, medico-social, economic and cultural difficulties.
Everyone today talks about Therapeutic Patient Education (TPE), the subject is fashionable. But what can TPE bring for people with systemic lupus? According to the WHO, "therapeutic patient education aims to help patients acquire or maintain the skills they need to best manage their lives with a chronic disease."
A research protocol is a study whose objective is to improve the knowledge of the frequency of occurrence, mechanisms and treatment of a disease.
There is still a lot that is unknown about lupus, and all patients are encouraged to take an active role in the fight to reduce the impact of lupus on the lives of people living with it. Everyone can help: this can be by supporting research, or by helping the community.
Every year, multiple projects are initiated to better understand lupus, its impact, and potential treatments on this discovery path. To progress, most of these projects require the co-working of multiple experts with different skills, experience, and knowledge.
ERN ReCONNET is the name of the European Reference Network that takes care of systemic lupus and other connective tissue diseases.
The French “Filière des Maladies Auto-immunes et Auto-inflammatoires Rares” (FAI2R: https://www.fai2r.org) is a health network dedicated for patients with rare autoimmune and inflammatory diseases.
Living with lupus can be a bumpy road, on which traveling alone is hard. In almost each European country, people living with lupus and their close relatives have created patient organisations, where they can share their experience, obtain quality information, raise awareness of the disease, support research programmes, and offer a helping hand to those (often newly diagnosed) that face difficulties.
Partner organisations
