Wegener

I developed sinusitis mid November 1993. The local doctor prescribed a course of antibiotics. I remember feeling very unwell at the time as my ulcerative colitis had reoccurred in late September and I was on 25mg of prednisolone and mesalazine. My children were aged 15 months and 3 years of age and my husband was busy in agri business in rural Victoria. After a course of antibiotics I returned to the doctor saying I felt no better, was vomiting and had chest pains. He gave me another course of antibiotics. The chest pain was unrelenting and I cried most of the time. The throbbing pain in my face was awful. Yet again I returned to the Doctor, the 3rd time in 10 days and was sent to Ear Nose & Throat surgeon who scanned my sinuses, of course they were clear. By this stage I had developed cluster migraines and felt like I'd been hit by a truck. Back to the Doctor I went to have an injection of pethidine for the pain. Although I was eating panadeine forte like lollies it did not have any impact on my pain. My husband having endured three weeks of a weeping wife packed us into the car and drove to Melbourne to see my Gastroenterologist. I can remember looking at the 3 year old from my horizontal position in the car and wondering why he was still in his PJ's. I was admitted to hospital and spent 2 weeks undergoing a battery of tests and examinations by various specialists. By now I was bedridden by the different aches and pains and had begun to cough constantly. The Doctors were very diligent but I couldn't understand why they kept on telling me I had vagueness!! I knew I was vague!! I was discharged from hospital on Christmas day 1993.

So after little more than 3 weeks of illness I was diagnosed with WG and started on 200mg of prednisolone and 100mg cyclophosphamide. I had developed a saddle nose by then, confirming the diagnosis. The next few years consisted of hospital admissions, some the effects of immunosuppression and others from WG. This improved with the change from cyclo to azathiaprine and today 10 years on I can say I have survived WG. I am still on prednisolone, azathiaprine and mesalazine and will be for life because of my ulcerative colitis, but that is another story!!