Myasthenia needs visibility, research and therapeutic adherence
More than 15,000 people in Spain suffer from myasthenia gravis, according to data released last June by the Spanish Society of Neurology (SEN), on the occasion of the National Day of this disease, June 2.
About 700 new cases are diagnosed each year.
In all European countries there is an increase in the incidence in people over 50 years of age.
In 10-15% of cases, the disease begins in childhood and adolescence.
Myasthenia gravis is a chronic autoimmune neuromuscular disease characterized by varying degrees of muscle weakness and fatigability.
In 50-70 percent of cases, the first symptoms appear in the eye muscles, causing drooping eyelids or double vision, but it can also affect other muscles of the face or neck and, over time, affect the muscles of the limbs or the respiratory system.
EFEsalut has traveled to the Hospital Clínic San Carlos in Madrid to talk about myasthenia in a new video blog of “Els teus medicamentes”, the initiative we develop together with the Viatris Foundation for Health with the aim of promoting and encouraging therapeutic adherence.
In this hospital, we talk to him doctor Jesús Porta-Etessam, head of the Neurology Section and vice-president of the Spanish Society of Neurology; now Nieves Rodriguezdelegate to the Community of Madrid of the Myasthenia Association of Spain (AMES).
Doctor Porta: Myasthenia requires early diagnosis
Dr. Door, what is myasthenia gravis?
It is a little-known disease that affects around 15,000 people in Spain. A neurological disease that affects what we call the neuromuscular junction, where the nerve ends and connects to the muscle through a substance called acetylcholine, which has to travel and stick to the side of the muscle so it can contract .
It is an autoimmune disease, so our defenses attack our own body and produce proteins that bind to this receptor to which the substance does not reach and muscle contraction does not occur, which justifies the symptoms that patients have , which is mostly one word, fatigability.
The patient with myasthenia, as he moves, feels more and more tired, so the most common symptoms are drooping eyelids, double vision or fatigue, which usually happens when the patient has done repeated exercise.
Is myasthenia a chronic disease?
Yes, like all autoimmune diseases. There are two types, one that mainly affects the eyes, the ocular; and a more severe, more generalized form, in which patients sometimes need to go to intensive care units.
What are the treatments?
The treatment is based on four circumstances.
One is to avoid circumstances that can make myasthenia gravis worse, such as certain drugs.
Another is to treat the patient symptomatically, that is, to make him better, for which we use a drug called pyridostigmine, which makes the patient feel better.
Another way is to treat the cause, with drugs that belong to the group of immunomodulators or immunosuppressants, such as steroids, prednisone, and many others that we commonly use.
And when the patient is serious, has a myasthenic crisis and can’t breathe well, then we use more acute treatments to get him better, and sometimes he has to be admitted to the hospital to be treated or monitored in intermediate units.
How is therapeutic adherence in myasthenia gravis and how can it be improved?
Adherence in general is not bad because it is a disabling disease; but sometimes the patient eventually goes off some of the medication, and then the symptoms start again.
That is why we, as neurologists, consider it absolutely essential to have adequate therapeutic adherence and adherence for patients, both in the symptomatic treatment, which will gradually decrease, and in the immunomodulatory treatment, which is what really to change the course of the disease.
How important is the doctor-patient relationship in treatment compliance?
In any neurological disease, this relationship is absolutely fundamental. If above we are talking about a chronic illness, since it reaches very high rates of need, and if above we are talking about a serious illness, with deterioration due to infections, the relationship must be totally direct, so that the patient trusts 100 per cent to the doctor, and the doctor gives access to the patient when he has a certain impairment.
doctor What is the central message for myasthenia gravis patients?
First, we must continue research to cure this disease in cases where we do not improve patients today. There are many treatments, surgery, etc. but there are more possibilities.
The second message is one of support, it is necessary to spread the disease to society so that the diagnosis is early and it does not take between two and three years until the patient knows that he is suffering from this serious and disabling disease.
Nieves Rodríguez: Patients need research to be boosted
Neus, what do myasthenia patients need and how is their quality of life?
Patients need further research, for drugs to control all myasthenias, and for these treatments to be curative rather than palliative.
The patient’s life can be very complicated. There are quite a few medicines, but not all of them manage to alleviate the symptoms. There are patients with a significant degree of disability, sometimes they cannot walk, double vision makes everyday life difficult, or they have difficulty swallowing or eating.
Medications control many of these symptoms, but there are symptoms that make life quite difficult for us many times.
What is therapeutic adherence and how can it be improved?
Adherence is good, but there are treatments that take time to take effect until you are diagnosed, and people in that period of time, if they have not been well informed, think that this medication is not for them or does not suit them , and they leave it, or take more than it should be because they think it will be better for them.
There are times when patients do not take the treatments well and this is very negative for us.
There are myasthenias that are well controlled with the indicated medication, but if the drugs are taken up and down, it becomes difficult for them to have a good effect.
What is the task of patient associations with patients with myasthenia gravis?
We don’t tell a patient what to take because that’s what neurologists are there for, but we talk to patients one-on-one when they tell you they’re worried because they think a medication will make them feel bad or a treatment doesn’t work for them.
Experience makes us talk to him, ask him for patience, indicate that there are medications that take time to take effect. We inform them, without entering the field of doctors, and we reassure them, we give them tools for day-to-day life that they may not find in the consultation, due to lack of time.
The most important thing is that there is an appropriate doctor-patient relationship, and that the specialist, when prescribing a treatment, has enough time to explain to you how it works, the time it takes to act. In the questions that the patient has not asked the doctor, that’s where the associations come in.
EFEsalut and the Viatris Foundation maintain their common goal of raising awareness in society about the importance of taking medications correctly and improving levels of therapeutic adherence.