Since 2010, she has been suffering from a severe autoimmune disease of the nervous system - NMOSD or neuritis spectrum disorder of the optic nerves and spinal cord. Anita Najmrocki experienced symptoms such as excruciating pain, hemiparesis, difficulty with movement, and loss of vision. Before the first two years, she sought a diagnosis, and for the next nine - she received various non-specific immunosuppressive drugs, but this did not protect her from subsequent bouts of the disease. She ended up in the hospital several times a year, and there were even times when a flare-up occurred every two months. She was resigned, confined to her illness and home. For three years, Anita has been taking satralizumab, an innovative drug that has a causal effect on NMOSD. Since then, she has not had a single flare-up, and her life has changed dramatically.
Anita Najmrocka: It's been three years since I had a bout of NMOSD. This is due to innovative treatment
Published Nov. 4, 2024 13:37
NMOSD ("neuromyelitis optica spectrum disorder," or neuromyelitis optica spectrum disorder) is a rare disease of the nervous system with an aggressive, darting-remission course. Rows of NMSOD resemble those of multiple sclerosis, but tend to be more severe, and remission is not complete - this means that some of the symptoms remain after each throw, leading to a rapid buildup of disability in patients. The direct cause of NMOSD is an abnormal function of the immune system, which produces antibodies against a proprietary protein called aquaporin 4, located mainly in the optic nerves and spinal cord. As a result of the antibody attack on aquaporin 4, inflammation develops in these areas of nerve tissue and the cells that make up this tissue die.
A drug that strikes at the cause of NMOSD is now available in Poland. It is satralizumab, which belongs to a modern group of monoclonal antibodies. Its action is to inhibit the inflammatory process and prevent neuronal death. In this way, it prevents the onset of disease flares and, consequently, inhibits the development of disability. Satralizumab is a drug administered subcutaneously, once every four weeks. As of November 2022, the drug is reimbursed for patients with NMOSD who meet certain criteria, in drug program B. 138.FM.
- Ms. Anita, please tell us when and how did your disease begin?
- The first symptoms occurred in 2010 and were very nonspecific. First there was skin hypersensitivity, which caused immense pain. Then came paresis and problems with walking. I had various tests done, but the results came out normal, meanwhile my condition worsened month by month. I sought help from many different doctors until, after a year and a half, I ended up in the hospital for the first time. By then, I already had a huge mobility problem. I only walked, with great difficulty, to the toilet. In addition, everything hurt terribly. I was totally resigned, because I still had no diagnosis of my disease. At the hospital, the doctors suspected multiple sclerosis, but the results of the cerebrospinal fluid and other tests ruled out MS. So I only received steroid treatment, just to make it at least a little easier for me to function. Unfortunately, after just three weeks, another exacerbation appeared - I had a high fever and could not move at all. I was again taken to a ward in the hospital, where I again had a lumbar puncture, which, like the previous one, did not confirm multiple sclerosis. After two weeks, I lost vision in my left eye. I was again given steroids, which alleviated the symptoms, but unfortunately did not reverse them 100 percent. However, I was sent to the University Hospital in Gdansk, Poland, and there the diagnosis of Devic syndrome, or NMOSD, was made. It has now been two years since the first symptoms.
- How did you accept this diagnosis?
- The moment of diagnosis was very difficult. Doctors told me very little about my disease, so I searched for information on the Internet. I read there that the average survival rate in patients with NMOSD is 5 years. This scared me, because I had a young child and I couldn't imagine that he would be left without me. It was horrible.
- What treatment have you been offered?
- At the time, only treatment with non-specific immune-suppressing drugs and, with flare-ups, steroids was possible. Unfortunately, this treatment was not effective. It happened that the throws appeared every 2 months, and every year I was hospitalized several times. Until in 2021 I started therapy with a new drug that works on the cause of NMOSD - satralizumab. And I almost forgot that I had the disease. Since starting this treatment, I haven't had a single relapse. Such long gaps between throws never happened before, so this is certainly the effect of this treatment.
- What is your life like these days?
- The disease has stopped interfering with my daily life. I can do everything and enjoy life with my loved ones - my daughter and husband. Knowing that I am taking a drug that works makes me feel incomparably better mentally as well. Previously, I used to close myself off from this disease, from home. Now I can plan for the future with confidence, without fear of what will happen. Because NMOSD is an unpredictable disease, before I started treatment with satralizumab, I was constantly worried about what the future would bring, and it was difficult for me to plan anything, even vacations. Currently, my daughter has started college, so I'm thinking about starting some new phase in my life too, doing something for myself. I think it's a good time to do it, because I feel really good and I hope it will continue like this. I already can't imagine how I could live without satralizumab treatment.
I would like to appeal to all people who find out that they have NMOSD - don't be frightened. Although it is initially difficult to accept such news, it is good to know that there is now an effective treatment available. And I very much hope that this drug will be given to everyone who needs it and meets the eligibility requirements for the drug program.
Dr. Robert Bonk, M.D., commented:
NMOSD is a disease with a much more aggressive course than multiple sclerosis, which can cause large neurological deficits in a patient in a very short time. And these deficits are irreversible, because in NMOSD there is damage to the cells of the nervous system from the beginning of the disease. Unlike in MS, in NMOSD demyelination is a secondary process. That's why NMOSD's episodes are more severe and leave more severe neurological deficits. For this reason, I believe it is essential to maintain a drug program for the treatment of NMOSD. Currently, this drug program applies only to patients with seropositive NMOSD, that is, with the presence of antibodies to aquaporin 4, and more than 130 patients are covered. These patients receive treatment with a monoclonal antibody directed against the interleukin 6 receptor - satralizumab.
My clinical experience with this drug has been very good. In patients who had an aggressive disease course with frequent exacerbations and clinical deteriorations before treatment, full clinical control of the disease course was achieved after the inclusion of satralizumab treatment.
All patients in whom I have used satralizumab have experienced resolution of any clinical and radiological activity of the disease, all have been able to return to normal function, and no patient - so far - has experienced relapse. What is noteworthy is that these are patients with newly diagnosed NMOSD, as well as patients who had previously received other types of therapy, including other biological treatments, which, however, did not protect them from NMOSD relapse.
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