Two years ago I didn't know what was the matter with me, I was tired all the time, had no iron in my blood, had joint pains in difference places every few days. Went into my doctors surgery one day and she phoned a specialist straight away and got an appointment in 2 days time. During those two days my eye became swollen and then my eye, as though I had been in a boxing match. The specialist took one look at me and said she wanted me in hospital for tests. Two days later I saw an ENT specialist, had blood tests and MRI scan and a week later was told it was Wegeners. Treatment of a small dose of chemo, then predisinone, imurel, batrim, calcium, rosuvastatine and aspirin followed. I have regular six week blood tests and see my specialist every 3 months. I feel lucky to be living in France now having come from England 4 years ago. Very few doctors in England seem to have heard of Wegeners and I always carry a printout from the internet about the disease.
I feel fine now only having one problem. I was also diagnised with colitis about 5 years ago and I think Wegeners or the pills are aggravating it. 4 times over the last three years I have been doubled up with pain and sickness for about 6 - 10 hours. Twice I have been admitted to Emergency but they found nothing and the pain gradually subsided. Has anyone had this problem?
Does anyone know how we get Wegeners. I used to think I was ultra fit never taking a pill until 2008 at the age of 61.
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