Living with vasculitis

The nature of vasculitis together with the immunosuppressive treatments often make it difficult for a newly diagnosed patient to know whether a particular medical problem or side effect is due to the disease, the drugs used, or another totally separate condition. Patients should, therefore, educate themselves about their particular vasculitic disease, including medication, side effects and potential problems.

Eventually you will become aware of what is and is not normal in your individual case.

Managing vasculitis is very much a team effort between you and your physician. The patient who is informed and educated about their condition can sometimes help the physician by asking the appropriate questions about their diagnosis and ongoing treatment.

Over time you will become more aware of what is and what is not normal in your own case. When a patient is unsure about any aspect of their condition or treatment, particularly whether a problem might be due to the medication or even to a possible relapse, it is important to contact the physician and not to wait until the next hospital appointment.

Vasculitis treatment invariably is undertaken by a hospital physician and not by the GP as the latter do not have expertise in vasculitis treatment. The hospital physicians who deal with vasculitis include: Rheumatology, Nephrology (kidney), and Ear Nose and Throat) although others may also be involved. Knowledge and expertise varies widely throughout the UK. Should you be unhappy with any aspect of your treatment you should not be afraid to seek a second opinion.