About half of all Wegener’s sufferers will improve with treatment but then go on to relapse (have a ‘flare’) within two years of stopping their treatment. You may have many such flares in the years following your diagnosis which will require a temporary increase in your treatment. So how do you know when you're having a flare? What is a flare?
The most obvious sign is that your original symptoms reoccur. Wegener's Disease attacks people in a number of different ways so everyone's symptoms will be different. Two thirds of Wegener's sufferers have ear, nose or throat problems so this may be an obvious first sign. Are you having headaches. Is your nose blocked or is it running persistently? Do you have lots of mouth or nose ulcers? Are you having nosebleeds? All of these are very common symptoms of a flare.
Fatigue is another good indicator but this can be difficult to detect. Are you tired because you are having a flare or because you have two children and you are working full time? It can be hard to differentiate between the disease and your normal hectic life.
Joint and muscle pain may be your first clue, along with feverish flu-like symptoms.
Your hearing may change. You may experience some deafness or a change in pitch.
While all of these symptoms on their own may point to a flare, perhaps the most surefire way to tell if you are having a flare is that you have two or more of the above symptoms simultaneously. Having a persistently runny nose and joint pain should be a warning sign. Constant headaches and a loss of hearing in one ear? Go to the doctor and ask them to check if you're flaring.
If you are diagnosed with Wegener's Disease it is highly likely that you will need to visit your doctor regularly for the rest of your life. One of the reasons will be to check your blood. Your doctor will be looking for elevated C-ANCA levels. As many as 90% of Wegener's sufferers having a flare will have high C-ANCA levels. This test is not 100% conclusive on it's own, however. Some people have naturally elevated C-ANCA levels and are not experiencing active Wegener's, while others are having a flare with low C-ANCA levels. So even though it is not a foolproof method of detecting a flare it is still very useful, and may even signal a flare before you start feeling the symptoms.
Even if you have had no previous kidney involvement, your doctors will probably want to keep checking your urine for signs of protein or blood. They will want to catch any flare where the kidneys become affected as early as possible.
Some people flare because their initial inflammation is under control and their doctors are reducing their medication. If you cut your steroid intake too aggressively you may flare. Although you may be feeling much better than you were when you were diagnosed you have to take heed of the medical advice and be careful when reducing your medication. You may start off taking 50mg of prednisolone per day for example and cut that by 5mg to take 45mg. That is a 10% reduction. However, if you are on 10mg per day and cut by 5mg that is a 50% reduction, even though the amount, 5 mg, is the same! A slow steady taper is usually best to reduce flares.
If you are in any doubt whether you are flaring or not, go and see your doctor. Over time you will get better at recognising whether you are flaring or just having a bad day which is unconnected to your GPA. You'll just know.
Image provided by R Nial Bradshaw through Creative Commons Licence.