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Hi, just found this site. I was diagnosed with Wegeners in October 2008, I had had painful joints from May 2008, struggling to do most things which is hard running round after 2 children and trying to run a pub. In beginning of Oct 2008 I began to feel ill with what i thought was flu. I had put myself to bed for a week and still there was no change then i started to develop black blisters on my face and chest. Again I didnt think too much about them and just thought i was really run down. I then developed mouth ulcers and coldsores all over my mouth this is when I couldnt take it any longer, i had been taking painkiller after painkiller very strong ones because of my arthritis and ibuprofen 600mg tablets along with codeine, i had run out of codeine and asked my other half to take me to a and e at our local hospital, saw a doctor who diagnosed my black blisters as impetigo and prescribed me some more codeine and a cream for the blisters. I didnt get the cream because the blisters looked nothing like impetigo. 3 days later I was screaming in pain so my partner once again phoned my doctor where the receptionist deemed i wasnt ill enogh to warrant a home visit from my doctor, so he put the phone down and dialed 999. I was rushed into hospital on the Friday afternoon and transfereed the day after to Hope hospital in Salford onto the renal ward. I was really poorly and didnt have a clue what was going on. I had a kidney biopsy the following day which confirmed the diagnosis of wegeners and was put onto cyclophostamide (chemo) the day after. Along with the cocktail of all the other tablets they prescribed. I was in hospital for the next 3 weeks and they had stabalised the condition luckily my kidneys responded and went from working about 15% to now at 30%. The doctor is happy with my progress for the time being and i am responding to the treatment thank god, although my kidney function had gone down again last time i had blood tests but they are not sure if it was because of an infection i had picked up, i pick a lot of infections up because the chemo supresses my immune system. I am at the moment feeling well apart from the pain in my feet, ankles and knees. Hopefully my kidneys will improve but my doctors thinks i will be looking at dialysis at sometime in the future when we dont know but, that was our main reason for coming out of the pub life so now i can rsst at home on the days i am bad.
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