What kind of terrible disease is systemic lupus erythematosus? And what does Dr. House have to do with it, who is at risk, and how is this pathology treated? aif.ru told about this rheumatologist, assistant at the department of therapy, rheumatology, examination of temporary disability and quality of medical care with a course of hematology and transfusiology named after. E.E. Eichwald Northwestern State Medical University named after. I.I. Mechnikova, Candidate of Medical Sciences Yana Leineman.
Disease has a woman’s face
Elena Nechaenko, aif.ru: – Yana Andreevna, how common is lupus in Russia and is it true that only women suffer from it?
Jana Leinemann: — Systemic lupus erythematosus (SLE) is an autoimmune disease, the prevalence of which, depending on the region, varies from 4 to 250 new cases per 100 thousand population per year. In 65% of cases, the disease debuts between the ages of 16 and 55 years, but in 20% it occurs earlier and in 15% later. Women suffer from SLE 8–10 times more often than men, but in men the disease debuts later and is more severe.
— What exactly causes the disease?
— The exact reason is unknown. There is a genetic predisposition to the development of an autoimmune reaction, but for it to start, a trigger must work. This is often caused by exposure to ultraviolet radiation (sunlight or solarium lamps). It is no coincidence that during the spring-summer period we have the most patients with both newly diagnosed disease and exacerbation.
Infections can also serve as triggers: for example, a common cold suffered “on your feet” can also cause an autoimmune failure. And instead of infection, the immune system begins to attack the skin, joints, and internal organs.
Hormonal levels are also important. This is why SLE is more common in women. Particularly dangerous for the debut and exacerbation of the disease are the periods of menstruation, pregnancy, lactation, as well as the beginning of taking hormonal contraceptives.
Everything was fine yesterday
— How quickly does systemic lupus erythematosus develop and how does it manifest?
— In some patients, the disease manifests itself with only a few symptoms within 5-10 years. If they are immediately treated correctly, the disease can proceed relatively easily for decades.
But sometimes the onset occurs acutely, at one moment, against the background of complete well-being, and immediately affects vital organs (for example, generalized skin rashes, articular syndrome, fever, swelling of the face and legs occur, preventing even getting out of bed). Then you have to urgently call an ambulance, and already in the hospital the patient finds out that she has SLE.
Rheumatologists are not always able to immediately diagnose systemic lupus erythematosus. But you can suspect a problem. For example, if a patient who has recovered from an infection has pain in the joints that does not go away for a long time, general weakness, a low-grade fever (37-38 degrees), and treatment with antibiotics or antivirals does not help, then he definitely needs to ask the therapist for a referral to a rheumatologist. This is especially true for girls.
— Can a person himself suspect lupus based on some signs?
– Yes maybe. This disease is characterized by skin syndrome in the sun with “butterfly” rashes on the face in combination with joint syndrome. Pain and swelling of the joints are also definitely a reason to consult a rheumatologist. He will find out whether the joint pain is a consequence of SLE or some other rheumatological disease.
It is important to pay attention to complaints from several organ systems: for example, from the gastrointestinal tract and joints, heart and gastrointestinal tract, etc.
In addition to the nonspecific symptoms mentioned above, such as general weakness, severe fatigue, weight loss, low-grade fever, another sign may be problems with the onset and gestation of pregnancy. Such girls definitely need to consult a rheumatologist. I’ll say right away that with proper diagnosis and further treatment, many patients manage to successfully become pregnant, carry and give birth to children. The sooner the meeting between the patient and the rheumatologist occurs, the sooner the disease will be brought under control.
Ask Dr. House
— It turns out that early diagnosis is very important. At the same time, it is known that SLE is the “great disease imitator”? What can lupus be confused with?
— Patients with SLE are indeed distinguished by a variety of complaints and dissimilarity from each other. Even the same patient may have a different picture of the disease at its onset and several years later. It’s not for nothing that lupus constantly came up in the TV series “House,” and doctors each time suspected this disease in patients with completely different symptoms if the prescribed treatment did not help them. And we do the same. We are the first to eliminate infections from the “circle of suspects”: the same ARVI, Covid, herpes. By the way, often it is herpes that triggers the disease and accompanies it. If the patient has changes in the clinical blood test, enlarged lymph nodes, hematological and oncohematological diseases must be excluded. If the central nervous system is affected, neurologists and I must rule out multiple sclerosis. Changes in the general urine test may require a comprehensive examination, including a kidney biopsy, to accurately determine that these are not nephrological or urological diseases. We check every symptom we find to rule out another dangerous diagnosis. And only when we are absolutely sure that the symptoms and laboratory abnormalities can be attributed to an autoimmune process, we make a diagnosis of SLE.
– Yes, before the start of treatment it may take more than one month, or even a year…
– In no case! We need to start treating such patients very quickly, and we do this even before confirming the diagnosis. Until this point, the card will say: “undifferentiated autoimmune disease.” Early treatment helps prevent the rapid development of SLE with a life-threatening course.
— What tests confirm the presence of lupus?
— The patient is tested for immunological markers. The main one is antinuclear factor (ANF). It does not yet confirm the diagnosis, but is already an “entry criterion” for suspecting SLE. Although an increase in ANF can be observed both in healthy people and in patients after an infection. Additional important markers of SLE are antibodies to double-stranded DNA, complement fractions C3 and C4. But for girls with reproductive problems, it is also necessary to check tests for antibodies to cardiolipin, beta-2 glycoprotein and lupus anticoagulant – markers of antiphospholipid syndrome, which often accompanies SLE.
After these analyses, the further set of diagnostic measures comes down to examining the organs and systems from which there are complaints.
Hormones: evil or good
— How often does lupus lead to disability?
— It depends on the speed of diagnosis and start of therapy. With proper and timely treatment, we manage to prevent serious organ damage if we are talking about a chronic course of the disease. If SLE is acute and the patient has a poor response to therapy (resistant course), then, unfortunately, the risk of disability increases.
— The disease is treated with hormones. And many are afraid of them. What can you say about these drugs?
— Glucocorticoids, discovered in 1950, radically influenced the lives of patients with SLE – thanks to them, it was possible not only to significantly reduce mortality from this disease, but also to control the course of the disease and significantly delay the onset of disability. Hormonal therapy helps with exacerbations as quickly and effectively as possible. Therefore, the first thing recommended to the patient is glucocorticoids.
Patients with lupus take hormones throughout their lives. If a response to therapy is obtained, we quickly reduce the dose of hormones and keep it at a minimum level, according to the recommendations, or even try to cancel it so that the patient remains only on basic therapy. As basic therapy, we use an antimalarial drug and oncology drugs—cytostatics; they allow us to block the autoimmune component and avoid the use of large doses of glucocorticoids. This is how we try to minimize the side effects of therapy. As a rule, it succeeds. However, unfortunately, it happens that even a small dose of hormones causes complications in patients: acne, increased blood pressure, obesity. If basic therapy does not help, then genetically engineered biological drugs are used. They make it possible to put a patient with a resistant course into remission, to cancel hormones, thereby eliminating the side effects of treatment.
Find your doctor and believe in yourself
— Is it expensive to have lupus?
– All treatment for patients with systemic lupus erythematosus – inpatient and outpatient – is available under compulsory medical insurance, that is, free of charge. Even biological therapy can be applied for free under a benefit or disability, and it can be carried out both in a hospital setting and in genetic engineering biological therapy centers, depending on the city or region.
— Lupus, despite the advances in rheumatology, is still incurable. And often it affects very young people who were completely healthy just yesterday. Not every psyche can withstand this. What would you like to say to patients facing SLE who may be feeling desperate?
“It’s important to remember that lupus is not a death sentence. Patients in remission are actively returning to their lives, and after a certain period of time they can plan a pregnancy, but, of course, under the supervision of a rheumatologist and gynecologist. Of course, this pregnancy is fraught with certain difficulties, but if you are prepared and optimistic, then everything will go well.
During the period of diagnosis, patients very often change doctors: they go from one rheumatologist to another. This is normal, getting a second opinion will be helpful. However, when prescribing and monitoring treatment, it is important to find your rheumatologist and continue to see him. This will increase the chance of achieving and maintaining remission. As a rule, if a patient finds his rheumatologist, trusts him, and is gradually seen by one specialist, the plan always works.
Under no circ*mstances should you be embarrassed to seek psychological help. We see that patients with SLE are very embarrassed about themselves, worried about the fact that they have stopped working or cannot give birth to a child. But at the same time, patients with a good mood and self-confidence after successful treatment return to work, family, and sports. My patients all do something: some dance, some badminton, swimming, yoga, and so on. Physical activity is a very important component, so as soon as the patient gets better, I insist on an active lifestyle that is beneficial for both physical and mental health. And psychologists help us. When a girl doesn’t want to go out anywhere, she feels weak, apathetic, therapy with a psychologist helps her find strength and overcome all barriers, self-doubt and take the first step. Then they are happy to run to training. Only an integrated approach can overcome a disease such as SLE.
