Living with Vasculitis

Administer the least toxic medication and at the lowest dose possible to control the vasculitis.

Patients must also take medications to treat the presence of high blood pressure, high cholesterol levels, diabetes and hyperuricaemia.

They must also take medicines to prevent osteoporosis such as calcium supplements, vitamin D and bisphosphonate.

Some antibiotics that can prevent specific infections commonly suffered by immunosuppressed patients.

Toxic habits. Patients are advised to follow healthy habits and avoid toxic ones to minimise cardiovascular risk factors; for example, they should avoid smoking, alcohol, obesity, high blood pressure, diabetes, high cholesterol levels and hyperuricaemia.

Diet. People with vasculitis have a greater risk of accelerated atherosclerosis (stiffening of the arteries) and are therefore recommended to follow a low salt, low fat and low sugar diet with plenty of vegetables, fish and olive oil.

Exercise. Physical exercise is recommendable, but at a level that is appropriate for each patient’s capacity and limits. Aerobic exercise such as walking, running, swimming or cycling prevents muscle weakness due to the vasculitis and the corticosteroid therapy, besides helping to control weight and other cardiovascular risk factors.

Sleep. It is important for patients with chronic diseases such as vasculitis to get enough refreshing sleep every night. To this end, it is a good idea to avoid or resolve situations of stress associated with the actual condition. In the case of treatment-related (corticosteroids) sleeping problems, their impact must be reduced by decreasing the dose or treating the insomnia with appropriate medications.

Sexuality. Chronic diseases such as vasculitis can result in direct physical problems and a degree of sustained weakness due to both the illness and the immunosuppressant therapy, which can interfere in sexual activity. In addition to emotional or psychological problems stemming from the condition or other personal issues, this can lead to different degrees of impotence or a loss of sexual desire. Mitigation of the physical problems, a better understanding and acceptance of the disease and the ability to discuss any problems (including sexual ones) with the healthcare team and appropriate specialists (gynaecologist, urologist, psychologist or psychiatrist) helps identify the cause of the sexual problem and address its improvement or resolution. Female patients of a childbearing age taking potentially teratogenic immunosuppressant therapies must take contraceptive measures and inform their doctor if they wish to get pregnant.

Travelling. Long-distance journeys involving extended periods away from the patient’s usual treatment centre and healthcare team are possible provided that the vasculitis is well controlled with stable doses of medication and non-life-threatening (in remission) and the destination country has an equally well-prepared healthcare service. Regarding journeys to countries that require certain vaccinations, some vaccines contain live, attenuated viruses (e.g., yellow fever), so they are not recommended in patients receiving immunosuppressive therapy.

Social and emotional support. Patients will receive support from their healthcare team, who will answer their concerns about the disease, their quality of life and life expectancy. The patient’s family and friends should be familiar with all the key points about the disease, so they may assist them in their everyday activities to the greatest extent possible. When necessary or recommended, patients can request help from other professionals such as psychologists or psychiatrists. Meeting other people with the same illness may also be helpful for some patients.