Frequently asked questions about demyelinating diseases

1.Diagnosis of demyelinating diseases Multiple sclerosis (MS) and optic neuromyelitis optica (NMO) are the two most common demyelinating diseases of the central nervous system. The diagnosis of both mainly relies on clinical manifestations, and the existing laboratory auxiliary tests, such as MRI of the head and spinal cord, oligoclonal zone bands in the cerebrospinal fluid, and water channel protein-4 antibodies in the serum, are non-specific. Therefore, for a definitive diagnosis, the clinical experience of the doctor is very important, and relying only on the information uploaded on the Internet cannot confirm the diagnosis of the disease, let alone treat it. The doctor must see the patient in person, examine the patient’s signs, and then analyze comprehensively whether it is a demyelinating disease? What kind of demyelinating disease is it? Finally, the doctor can decide what drugs to use for treatment. The goal of demyelinating disease treatment is to achieve complete remission, i.e., to restore clinical performance to the level before relapse. The best time to achieve complete remission is within six months after relapse, and the likelihood of complete remission decreases beyond one year. Partial remission is an acceptable treatment goal when remission cannot be achieved with all therapeutic measures. This means that the patient’s relapse may leave behind partial neurological insufficiency. 3. Treatment measures for acute relapse of demyelinating disease Relapse is defined as a condition that has been in remission for more than 1 month and the original symptoms recur or worsen, or new symptoms appear for more than 24 hours, excluding other causes such as fever and infection. In both MS, and NMO, shock therapy with high-dose methylprednisolone is mostly used during the acute exacerbation (relapse phase). If there is hormone resistance (hormone therapy is ineffective), allergy, or contraindication, plasma exchange therapy or immunoglobulin therapy, as well as immunosuppressive therapy may be used. 4. Treatment of demyelinating disease in remission Intensive treatment during the acute relapse period allows the patient to be in remission, but for the vast majority of patients, remission is not a cure, but only a temporary suppression of autoimmune processes in the body. As time passes and the immunosuppressive effect of the drugs diminishes, the autoimmune phenomenon may “resurface” and symptoms may recur. Therefore, even in remission, immunosuppressive therapy should not be stopped completely. It is the common wish of doctors and patients to use the smallest dose of drugs to control the disease without relapse and to benefit the patients to the greatest extent. 5.The pros and cons of hormone therapy Because of the many adverse effects of hormones, the treatment guidelines for demyelinating diseases at home and abroad limit the use of hormones to a “short course” of three weeks, but clinical practice proves that this is not the best choice. However, clinical practice has shown that this is not the best option because patients have recurrent attacks, which greatly increase the chance of disability (blindness, paralysis, urinary and bowel disorders). Adverse drug reactions should not be a reason not to use hormones compared to severe disability, resulting in a reduced quality of life. Moreover, if appropriate preventive measures are given for the adverse effects of hormones, they can be avoided or reduced to a minimum. 6, the use of immunosuppressants Because of the long-term use of hormones, the patient’s sensitivity to hormones decreases, the efficacy decreases, and the risk of adverse reactions increases with long-term use, so the best way is to combine immunosuppressants with small doses of hormones. The choice of which immunosuppressant to add also depends on the clinical experience of the doctor, the patient’s economic condition and physical condition. Immunosuppressants also have many toxic side effects, such as damage to liver and kidney function and inhibition of bone marrow hematopoiesis. Therefore, immunosuppressants should be used under the guidance of a doctor, and patients should have their blood and liver and kidney functions tested regularly. 7, the duration of maintenance treatment If a small dose of hormones combined with immunosuppressant maintenance treatment, experience suggests that the minimum time of 5 years. If discontinuation leads to relapse, lifelong maintenance may be required (we have patients who have been on maintenance therapy for nearly 30 years). 8. Sequential treatment patterns To date, there is no standardized treatment protocol regarding demyelinating diseases, and each physician proceeds according to his or her own clinical experience. Inspired by the clinical treatment patterns of oncology, rheumatology, organ transplantation and other disciplines, we have concluded a sequential treatment model for demyelinating diseases after nearly 30 years of exploration, which is worthy of further clinical verification and improvement. Sequential treatment is one of the combined treatment modalities, which refers to the use of several therapeutic drugs with different mechanisms of action in order to reduce the dose of various drugs, bring into play the therapeutic effects of various drugs, and reduce the adverse effects of various drugs. For example, in the early stage of demyelinating disease relapse, induction therapy (lasting one month), consolidation therapy (lasting six months) and maintenance therapy (lasting at least five years) are implemented in the middle stage of remission. 9. Adjuvant therapy For adult patients with hypertension, choose angioconverting enzyme inhibitors (ACEI) or angiotensin II receptor blockers (ARB). For those with high serum cholesterol and LDL, choose statins. When treating diabetic patients with hormonal shock therapy, take care to regulate the dose of hypoglycemic agents, including insulin. Prevent bone litigation with active vitamin D and calcium carbonate. If patients have severe pain, they can take drugs such as carbamazepine and gabapentin. 10. Precautions for pregnant and lactating female patients Patients preparing for pregnancy should discontinue the use of immune agents for six months or opt for azathioprine use. Patients who are already pregnant discontinue the use of immunosuppressive agents until delivery. For relapse during pregnancy, choose immunoglobulin or hormone therapy. Early after delivery, relapses are likely to occur and infection, mood swings and fatigue should be avoided. Usually patients should not stop breastfeeding, even if they use hormones, they can breastfeed, but they should change the way they breastfeed. For example, if hormones are mostly taken at once after breakfast, milk can be sucked out and stored for feeding in the post-dose time period before medication is administered. 11. Treatment of elderly and pediatric patients Because elderly patients are mostly combined with other diseases and most of their organs are not fully functional, care should be taken to regulate the dosage of medication. The diagnostic treatment of pediatric patients is similar to that of adults.