Ankylosing spondylitis is not scary

  I hadn’t been on for a long time due to my busy schedule, but the words of a young patient’s mother in the clinic today touched me again. She said that after reading my first two articles online, her understanding of ankylosing spondylitis has become more in-depth and correct. As a mother of a 15-year-old boy, I can relate to this feeling, so I’m taking time out of my busy schedule to write another article about ankylosing spondylitis today, more than 2 years after the last one.  I was very impressed by a 15-year-old boy who was admitted to the ward today. The boy was very good-looking, well-behaved, but as soon as he entered the office we noticed that he was walking with a cramp. When I asked his mother, she said that he had been diagnosed with ankylosing spondylitis for 3 years and that his family was not in a bad financial situation. The doctor recommended that they use biologics for treatment, but because his parents listened to others and had concerns about biologics, they missed the best time to treat him, resulting in a large inflammatory effusion and other irreversible damage to the hip joint. The prognosis for this little handsome boy is not optimistic, although none of us could bear to tell him. It hurts my heart to look at the flower-like teenager who is at risk of lifelong disability because of his parents’ ignorance of medicine and disease. This is one of the factors that contributed to my sitting in front of the computer today to write this article.  Over the past few years, scientific advances, medical advances, and social advances have led to a better understanding of ankylosing spondylitis as a disease, and treatment is becoming more timely, so the prognosis is getting better. I have a large group of young people with ankylosing spondylitis who are living completely normal lives, going to school or working normally, and many of them have already started families and had children. In modern society, ankylosing spondylitis is no longer a terrible disease that people need not be afraid of, but must be taken seriously.  In terms of diagnosis, the diagnostic criteria for ankylosing spondylitis are now significantly more relaxed than before. By previous standards, the diagnosis is often clear when the patient is already in the middle or late stages of ankylosing spondylitis. By today’s standards, many early-stage ankylosing spondylitis that does not destroy joints or bone can be diagnosed and treated in a timely manner and may never progress to a mid- to late-stage again. Young men aged 14-45 should be alerted to ankylosing spondylitis if they experience low back pain at night while sleeping and stiffness throughout the morning that gets better with activity. However, it should be noted that in young boys around 14-18 years of age, many of them present with swollen and painful fluid in the knee or hip joints, which can also be easily misdiagnosed as other arthritis. Moms and dads must be aware that when their children develop similar symptoms, they must be brought to a rheumatology clinic to be screened for ankylosing spondylitis to avoid delays.  For patients who have been clearly diagnosed, there is more concern about treatment. Progress in these years is still dominated by biologics. in the spring and summer of 2015, I spent some time studying at University College London, while being a visiting scholar at the world’s top level University College London Hospital, the Royal Free Hospital and the Whittington Hospital, and found that for the disease of ankylosing spondylitis, our domestic level of diagnosis and treatment is completely on par with these top international hospitals. Because we have a large population, a large number of patients and few doctors, each doctor has seen far more patients than they have, so they have a little more experience. So how do these hospitals treat ankylosing spondylitis? For female, mildly ill patients, they generally just give Fotarine tablets or Cilazapro oral treatment; for slightly more severe conditions, they add 3-4 tablets of salazapyridine, to be taken orally twice a day. The younger ones, with active disease and ineffective treatment with other drugs for 3 months, they did not hesitate to start treatment with Enzyme injections (because only Enzyme is available abroad, not Lexapro or Ambienol). Interestingly, because the UK has universal free health care, patients use Enry completely free of charge, and the pharmaceutical company will send someone to deliver the drug to the patient’s home and teach them how to use it, so patients with ankylosing spondylitis in the UK expect to be treated with biologics and refuse to reduce the dosage, always using two per week. This is completely different from our Chinese doctor-patient mindset, where we all try to reduce the dosage as quickly as possible to maintain it, and ideally stop it, because the cost of expensive drugs overwhelms the patient and the doctor is under a lot of pressure. So the national situation is different, the choice of treatment is also different.  Then, in China, after about 1 year of standardized treatment, generally speaking, patients’ disease can be well controlled, and at this time, if the blood sedimentation and other indicators are also good, it is time to start to reduce and stop the drugs. Some patients can maintain their disease for several years or even more than 10 years without relapse after stopping the drugs; however, some patients may relapse only a few months after stopping the drugs, which varies from person to person. In principle, the younger the patient is, the more severe the disease is, and the more likely it is to relapse. In the event of a relapse, the original medication can still be used to continue treatment, and the condition can be controlled in a timely manner as long as it is handled promptly. Ankylosing spondylitis is a chronic disease that cannot be cured by current medical treatments, so relapse is almost inevitable. Relapses are not terrible, and as we age, they become less frequent and more frequent. As long as we maintain a normal body shape and keep the joint function from being destroyed, we will have achieved our goal. In the future, when science advances, maybe one day, ankylosing spondylitis will be cured. But the prerequisite is to maintain a good condition, otherwise once the hunchback, spinal ankylosis and hip destruction occur, even if there is a cure later, it will be useless.  Therefore, if the economic conditions allow, patients who meet the following conditions: young men (women with heavy disease are also available), heavy disease assessment, active stage, and other medications are not satisfactory, it is advisable to consider the timely and early use of biological agents to obtain the best results and prognosis; if the economic conditions are not good and they cannot afford it, they must also be treated seriously, even if they have been taking very cheap Fotarine, they will good results are achieved. Of course, when the disease is controlled and the pain is relieved, timely and adequate functional exercise is very important, and sometimes the function of functional exercise is even equal to the effect of a drug. Moreover, proper and adequate functional exercise is essential to maintain body shape and joint function, which cannot be achieved by injections and medication alone. Functional exercise is mainly aerobic exercise, try to avoid fast running, basketball, soccer and other strenuous sports, more recommended warm water swimming, yoga, Tai Chi, radio exercises and other ways. The point is, exercise is both free and helps make the body healthier!  Still, in modern society, technology has been very advanced, we must treat diseases scientifically. It is not terrible to have a disease, what is terrible is to have a disease without treatment or disorderly treatment. Do not believe in the secret formula, small needle knife, laser, ion and other esoteric and no scientific basis for the treatment method, wasting money at the same time, delaying the disease, some will also cause serious adverse consequences. If the family economy is really difficult, or there are doubts about modern medical treatment, then try to functional exercise, but also will have some effect.