Who is sick and where does it all begin?
Lupus is noticeably more common in women, and usually begins during childbearing age - between approximately 15 and 45 years. In men, the disease develops less frequently, but is often more severe. The onset is often gradual: unexplained fatigue lasts for months, from time to time a slight fever rises, joints hurt, and hair falls out. Each symptom individually appears insignificant, which is why it often takes a year or more from the first symptoms to diagnosis.
- A butterfly-shaped rash on the cheeks and bridge of the nose, sparing the creases of the nose.
- A sharp reaction to the sun: after a short stay, a rash appears, weakness increases, and the temperature rises
- Pain and swelling of small joints of the hands, wrists, knees - usually symmetrical, with morning stiffness
- Prolonged fatigue, disproportionate to the load, which does not go away after rest
- Non-healing, painless sores in the mouth or roof of the mouth
- Hair loss, sometimes in patches
- Whitening and blueness of fingers in the cold followed by redness - Raynaud's syndrome
- Low-grade fever without obvious infection, swollen lymph nodes
There are several situations in which you might want to consider lupus even without the classic rash. A young woman with an unexplained decrease in the number of white blood cells and platelets in the complete blood count. A patient with repeated early pregnancy losses. A person with sudden protein in the urine due to joint pain. Each of these findings in itself does not mean a diagnosis, but it is a sufficient reason to see a rheumatologist, and not limit yourself to a repeat analysis in a month.
Why the sun is not a small thing
Ultraviolet light is one of the most reliably established provocateurs of exacerbation. Under its action, skin cells are damaged and release intracellular contents, which the immune system in lupus treats as foreign. The result is not only local: after a day in the sun, some patients develop not just a rash, but a general reaction - weakness, fever, exacerbation of articular syndrome, and sometimes deterioration in kidney function.
- Sunscreen with a high protection factor - daily in open areas, not just on the beach
- In summer in Tashkent, avoid the street during hours of maximum sun, plan your activities for the morning and evening
- Long sleeves made of thick fabric, wide-brimmed hat, sunglasses
- Remember that ultraviolet light passes through clouds and is reflected from water and light surfaces
- Avoid solariums completely
- Keep in mind that some medications increase sensitivity to the sun - check with your doctor for any new prescription.
There is a practical consequence of strict sun protection that is often overlooked: Vitamin D levels are naturally low in people with lupus. It is monitored and, if necessary, replenished as prescribed by a doctor - it is part of the treatment plan, not an isolated whim. As for other provocateurs, these include infections, significant stress, smoking and self-cessation of treatment, as well as some medications, so it makes sense to discuss any new drug with a rheumatologist.
Kidney damage: the main reason to rush
Lupus nephritis develops in a significant proportion of patients, most often in the first years of the disease, and it is this that most determines the long-term prognosis. The insidious thing is that it begins asymptomatically: the kidneys do not hurt, the state of health does not change, but in the meantime changes are already underway. When swelling appears and pressure rises, the damage is usually quite advanced. Therefore, the assessment of kidney function is not tied to complaints - it is carried out according to a schedule.
- Общий анализ мочи — базовый и самый доступный инструмент: он показывает белок, эритроциты и цилиндры задолго до появления жалоб.
- Количественная оценка белка — соотношение белок/креатинин в разовой порции мочи или суточная потеря белка.
- Креатинин крови с расчётом скорости клубочковой фильтрации — показывает, как почки справляются с работой.
- Артериальное давление на каждом приёме и дома: его повышение бывает первым внешним признаком нефрита.
- Биопсия почки при подтверждённом поражении — она определяет класс нефрита, а от класса напрямую зависит выбор терапии.
A biopsy often frightens patients, and they try to refuse it. Meanwhile, without it, treatment is prescribed blindly: different classes of lupus nephritis require fundamentally different intensity of therapy, and an error in both directions is expensive - either excessive immunosuppression with its risks, or insufficient, with loss of kidney function. The procedure is performed under ultrasound guidance and takes little time, and the information it provides influences decisions for years to come.
What tests confirm the diagnosis?
The diagnosis of lupus is made based on the combination of the clinical picture and laboratory data - there is no single test that alone solves everything. This is fundamental: both a positive result without symptoms and a negative result with a bright clinic require not hasty conclusions, but assessment by a specialist.
- Antinuclear antibodies (ANA) - a screening test that is positive in almost all patients with lupus, but also occurs in healthy people, especially older women
- Antibodies to double-stranded DNA are much more specific for lupus, their levels often reflect disease activity and are associated with kidney damage
- Antibodies to the Sm antigen are rare, but highly specific
- Complement C3 and C4 - their levels decrease during active disease, making them a convenient marker for monitoring
- Complete blood count: decreased leukocytes, lymphocytes, platelets, anemia
- Urinalysis and creatinine - kidney assessment at every stage
- Antiphospholipid antibodies - determine a separate risk of thrombosis and pregnancy complications
Isolated positive ANA deserves a separate discussion. This result occurs in a significant proportion of completely healthy people, as well as in other autoimmune diseases, infections and while taking a number of medications. In itself, it is not a diagnosis or a reason for treatment. The correct reaction is a face-to-face assessment by a rheumatologist: are there any symptoms, what other antibodies are detected, what blood and urine tests show. Much more often, the problem is created not by the analysis itself, but by its independent interpretation on the Internet.
Treatment and life with diagnosis
The goal of treatment is stated simply: to achieve remission or minimal activity and maintain it on the lowest possible doses of drugs. The regimen is selected individually - it depends on which organs are involved and how active the disease is. The general logic is the same for everyone: the basic drug is taken constantly, and stronger drugs are used for the period of exacerbation and then gradually decrease.
- Hydroxychloroquine is a basic therapy that almost all patients take on a regular basis. It reduces the frequency of exacerbations, protects the kidneys and improves long-term prognosis, so it is not canceled “as unnecessary” if you feel well
- Glucocorticoids - quickly suppress activity, are used as soon as possible and in minimally sufficient doses due to side effects with long-term use
- Immunosuppressive drugs - for damage to the kidneys, nervous system, blood; they allow you to reduce the dose of hormones
- Genetically engineered biological drugs - in case of insufficient response to standard therapy, according to the decision of a rheumatologist
- Blood pressure control and kidney protection, treatment of lipid metabolism disorders
- Routine vaccination during periods of low disease activity - infections remain one of the main problems with immunosuppression
Cardiovascular risk in lupus is less talked about than it should be, but it is significantly increased and is not reduced by age: chronic inflammation accelerates the development of atherosclerosis, and heart attacks in patients with lupus occur earlier than the average population. Hence the practical conclusion - quitting smoking, controlling blood pressure, cholesterol and weight with this diagnosis mean no less than anti-inflammatory therapy itself.
Pregnancy, work and everyday life
Previously, lupus was considered a contraindication to pregnancy. Today the approach is different: pregnancy is possible and in most cases ends successfully, but it must be planned. The key condition is stable remission for about six months before conception, preserved kidney function and previously revised therapy, since some drugs are inadmissible during pregnancy and are replaced with compatible ones.
- Plan your pregnancy with your rheumatologist and obstetrician-gynecologist, rather than reporting it after the fact
- Replace medications incompatible with pregnancy in advance and make sure that the disease remains in remission on the new regimen
- Separately check antiphospholipid antibodies: if they are present, the risk of thrombosis and pregnancy loss increases, and management tactics change
- Observe more often than usual, monitor blood pressure, protein in urine and fetal condition
- Remember that individual maternal antibodies can affect the fetal heart, so additional monitoring is carried out at certain times
- Discuss breastfeeding in advance - it is compatible with a number of medications, but not all
In ordinary life, illness imposes fewer restrictions than is commonly thought. It is possible to work, study, exercise, and travel with controlled lupus; What makes sense is not a ban on activity, but regular observation and reasonable organization of everyday life - sun protection, adequate sleep, quitting smoking, timely treatment of infections. It is worth mentioning separately about fatigue: it often remains even with formal remission, is poorly visible to others and is therefore perceived by loved ones as laziness or an excuse. This is a real symptom of the disease, and it is not willpower that works against it, but sleep patterns, dosed physical activity and discussion of the problem with a doctor - sometimes persistent fatigue hides anemia, vitamin D deficiency or thyroid dysfunction.