Lupus – the enemy in your body

Proven content

He is like a secret agent that can stay dormant in a body for years without letting it know. When it wakes up, it begins to sabotage the body’s work from the inside. And it drives the body to self-destruct, cell by cell. Lupus – one of the most malicious and mysterious diseases of mankind.

1. Lupus is a disease of the connective tissue. In its course, the body begins to attack itself. The symptoms may be different for each patient
2. Most sufferers complain of tremendous pain in joints and bones, as well as weakness. A characteristic butterfly-shaped erythema appears. In the case of Iwona, there were problems with the thyroid gland, kidneys and heart
3. Lupus mainly affects middle-aged people in their 40s. Women predominate among the patients

Lupus – the pain is unbearable

Iwona looks like Sophia Loren’s younger sister and at least ten years younger than her birth certificate. The slim, tanned 62-year-old has just become a grandmother for the second time. In addition to her grandchildren, she takes care of the house and the nurtured garden, as well as two dogs and nine cats. Always elegant, smiling and energetic. No one who looks at her believes that she has been struggling with an illness for fifteen years. And that her best friends are tramal, ketonal and morphine.

– I take the first tram at 4 am, because the nights are the worst. As if I had a glowing fire in my bones. Knees, hips, thighs and shoulders hurt. After the medication, the pain does not stop, it just calms down so that I can get up from the bed. During the day I take four or five ketonals, and on the most critical days I stick patches with morphine. They are very good, the pain goes down. But you vomit and have nightmares, like the morphine.

She did not know for a long time what was wrong with her

– Actually, throughout the 90s I felt constantly weak, I had pains moving over my muscles and bones. I thought maybe rheumatism, but I was working, the children were small, it was necessary to take care of the house – recalls Iwona. At that time, she had no time or “head” to visit more doctors and perform in-depth diagnostics.

– It hurt more and more, then mouth aphthous appeared, problems with the thyroid gland, I felt weak, still not feeling well. A friend with lupus told me to get tested for him. When I had lupus changes on my face, such a characteristic butterfly-shaped erythema, I ended up in a clinic in Szczecin and in 2001 I was finally diagnosed.

The disease attacked from hiding

The damage that the disease caused in Iwona’s body would be enough to deal with a few seriously ill patients.

– I have water in the pericardium, leukopenia, Hashimoto’s disease, kidney stones, atherosclerosis and third degree hypoxia of the heart, it is difficult for me to climb stairs – she enumerates. – In addition, changes in the kidneys, problems with the pancreas and liver. And pain, constant pain in bones, muscles and joints, and enormous fatigue. Plus, there are stents in the veins, but still with all this people don’t believe I’m sick because you can’t see it. And whatever research I do, changes are everywhere. This is a strange disease.

Lupus is unpredictable. You never know what organs it will take up and how quickly it will destroy them.

– It is a systemic disease of connective tissue in the course of which the immune response is impaired. As a result, autoantibodies are formed, directed against the body’s own structures – explains Dr. Lidia Ostanek from the Department of Rheumatology and Internal Diseases of the Pomeranian Medical University in Szczecin. – They can attack all structures and tissues of the patient’s body, hence the picture and course of lupus can be very different. In some patients, it is mild and slow, there may only be joint symptoms, i.e. joint pain and swelling, or skin changes, most often associated with hypersensitivity to ultraviolet radiation, i.e. to the sun, or mild hematological complications, leukopenia, thrombocytopenia. Patients with this form of lupus can function peacefully and do not require much treatment, the prognosis is very good.

Lupus is most common in people around the age of 40, although children and elderly people in their 70s and 80s can also suffer from it. But by far most of the patients are middle-aged. Mostly it’s women.

– It is estimated that women get sick 9 times more often – explains Dr. Lidia Ostanek. – Lupus is most often induced by viral infections, especially infection with the Epstein-Barr virus, contact with certain chemicals and paints, toxic environmental compounds, and exposure to ultraviolet radiation, i.e. the sun. The disease is genetically determined, the patient’s family members are more likely to develop the disease.

No one in Iwona’s family was diagnosed with lupus. She herself believes that in her case the trigger for the disease could have been her love for the sun. Whenever she could, she would run to the city beach or get a tan while working in the garden. Doctors suspect that the sun may be one of the most common triggers of a disease response in the body. The sun and the system of genes.

– We are all exposed to various types of environmental factors and infections, but only a certain number of people suffer from disease – explains Dr. Lidia Ostanek. – In Poland, it is estimated that 40 out of 100 suffer from lupus. people of the population, i.e. the diagnosed disease has about 20 thousand. Poles. African-Americans are sick much more often than Caucasians (over 200 people per 100). In Europe, the highest incidence of the disease is observed in Sweden, Iceland and Spain.

Lupus is not a sentence

In the past, it was believed that patients with lupus should slowly say goodbye to their loved ones. Today, doctors argue that even with advanced forms of the disease, one can live a long and relatively happy life.

– There is a perception that lupus patients have a 5-year survival period. This is bullshit. Over the last 20-30 years, our understanding of immunology and pathogenetic mechanisms has grown enormously, and our recognition and treatment options have increased. Today, for example, we are much more likely to recognize the mild forms of lupus that we used to miss. We also know how to treat it better – explains Dr. Lidia Ostanek. – In the case of mild forms, we use non-steroidal anti-inflammatory and anti-malarial drugs, and in the period of exacerbations, glucocorticosteroids. In moderate forms, we additionally use immunosuppressive treatment. In severe forms, patients require much more intensive treatment, i.e. high-caliber immunosuppressive drugs that we use cyclically, or in chronic treatment, such a patient requires increased care.

Iwona is somewhere between a medium and a heavy figure. He has a rather unusual disease, but atypicality is inherent in this disease, which affects organs and tissues according to a key known only to it.

– I was taking various combinations of drugs, some were better, some were worse. I got a kick on steroids and walked around like crazy, but they weaken my bones. Endoxan is half a chemical, it destroys the body, but it helps, it calms down the disease. For several years, I went to the hospital every month for a week and took drips with drugs, 5-7 hours of lying under one, because they come in very slowly. Then you know nausea and vomiting like after chemotherapy, but for two or three weeks it was better, I had energy. Then a drop and back to the hospital.

Today Iwona is struggling with the pain with painkillers, but plans to return to the hospital for drips. And she’s convinced that what really keeps her upright is not the drugs, but the firm resolve that the disease won’t break her.

– I know sick people who sit in a corner and do not move their hand or foot, stop functioning and go out. I don’t like sympathy, so I don’t tell anyone about my illness, but I try to function as normal as possible. A lot depends on the ability to withstand the pain that basically never disappears and the mental attitude. I have a normal life, a husband, children, grandchildren, a house to take care of, a greenhouse which I water every other day, a garden, cats and dogs to feed. I get up and do it, yes there are days when I am behind glass, that I cannot climb the stairs due to pain. But I grit my teeth and believe it will get better.

Prescription diet

What helps lupus patients the most, apart from medications, avoiding the sun (in periods of high sun exposure, using filters over 50) and having a strong psyche, is a healthy lifestyle. Preferably under the supervision of a doctor.

– Patients should live a healthy life and avoid infections. Lead a hygienic lifestyle because it is conducive to maintaining intracorporeal homeostasis and immune balance. A diet low- rather than high-calorie, high in vegetables and polyunsaturated fatty acids, with less animal protein for the benefit of the fish. Such a balanced effect has a very positive effect on the immune balance, the tendency to overproduce autoantibodies and complications is reduced in patients, the disease stabilizes more easily – says Dr. Lidia Ostanek.

He also adds that lupus patients should be under the care of a rheumatologist, because his knowledge and experience in the diagnosis and treatment of lupus is much greater than that of a primary care physician. – It is also extremely important for the patient to understand what his disease is, trust the doctor and strictly follow his recommendations

This may interest you:

1. Atypical symptoms and there is no cure
2. A mysterious disease spreads to the shoulder blades. «How can I enjoy life when my whole body hurts?»

The content of the medTvoiLokony website is intended to improve, not replace, the contact between the Website User and their doctor. The website is intended for informational and educational purposes only. Before following the specialist knowledge, in particular medical advice, contained on our Website, you must consult a doctor. The Administrator does not bear any consequences resulting from the use of information contained on the Website.