Symptoms and What to do about them

PLEASE REMEMBER - symptoms come and go, and new ones appear and disappear - it is part of the illness and how it behaves. It is better to seek advice early and get appropriate treatment, in order to prevent damage caused by new areas of inflammation. However, your doctor will decide whether a new symptom has anything at all to do with your vasculitis.

When the disease first appears, symptoms may include unexplained weight loss, unexplained fever, skin lesions, muscle pain, joint pains, and mouth ulcers or genital ulcers that do not go away. Some symptoms are associated more with a particular form of vasculitis than others, such as sinus problems with Wegener's Granulomatosis and genital ulcers with Behcet's disease. As you become more aware of how your vasculitis affects you as an individual, then you appreciate that worsening of these symptoms may be a sign of a flare.

Also, many people with vasculitis report a feeling of immense fatigue. Everybody feels tired occasionally, but this fatigue is all consuming. So much so that some people cannot even function. It is this aspect of the disease that many patients find very hard to cope with. Added to this, it is a symptom that cannot be seen and is easily misunderstood. Knowing this is common, and accepting it, can be helpful to you and your family.

Unfortunately, one of the problems of having an uncommon and not well known illness is that family, friends and work colleagues may find it hard to understand what is happening to you - particularly if your symptoms are hidden and you 'look well'. So it is hoped that this booklet will be of use to your friends and relatives in coming to terms with your disease and how it affects you.

Included in this section is a list of symptoms that may be connected with vasculitis. No one will have them all, and many will have just a few depending on which part of the body is affected. However, some symptoms may be easily ignored, for example, sinus problems, and a trip to the doctor is delayed. For some patients this is an important feature but for others it's not. When the illness is new to you, it is advisable to let the doctor know what is happening and let him decide what is important or not. However, as you learn more about your disease and your own body, you will be able to decide what needs reporting. But if in doubt, do contact your doctor.

Some people with vasculitis report that they always "look well" even when they are feeling at their worst! (This may be a side effect of taking prednisolone, or just because the disease itself can be such a hidden one.) If you- know this applies to you, it would be helpful to remind your doctor of this whenever you are consulting him regarding new or ongoing medical problems. The severity of your symptoms may be underestimated if your doctor is unaware that how you look is not an accurate indicator of your real state of health.

General (systemic) symptoms

Malaise and fatigue (a feeling of being unwell and tired, often exhausted), muscle pains, joint pains, headache, fever (any raised temperature), and 'flu like' aches and pains. Weight loss (when not on a diet) should always be reported. Skin, including the mouth

Any rashes, ulcers, spots or other changes noticed. Eyes

Any soreness, redness, dryness, blurred vision or loss of vision. Ear, nose, throat

Nasal obstruction (blocked nose), bloody nasal discharge, crusting, sinus problems, difficulty with hearing, deafness or hoarseness. Lungs

Any persistent cough, shortness of breath, difficulty breathing or wheeze, coughing up blood or painful breathing. Heart

Any chest pain, irregular pulse, racing/fast pulse, palpitations. Abdomen/bowels

Severe abdominal pain, bloody diarrhoea. Kidneys/urine

Any blood in the urine, any problems with passing urine. Nervous system

Confusion/lack of concentration, forgetfulness/loss of memory, dizzy spells, pins and needles, loss of sensation anywhere, weakness/loss of movement in any limbs, tremor/shakes.