Anne in some ways I am very lucky in that my heart, liver, kidney and lungs seem to be unaffected by Wegener's and in very good condition. My eyes despite having had recurring ulcers and inflammation since 2009 are undamaged and have been clear and white since shortly after leaving hospital. My sinus operation in 2013 was deemed a success and compared with what some are going through here my sinus issues are minor. I have had years of post nasal drips and nasty cough and only late last year found out the two were related and now since the Wegener's diagnosis it has been confirmed that despite many episodes of pneumonia, pleurisy, chronic bronchitis and bronchial obstructions over the years going back to 2002, my lungs are in very good shape! Even some fibrosis seems to have healed. At one stage I was diagnosed with fatty liver but that is also gone.

So that leaves the digestive issues which have been plaguing me for years. Bowel problems go back to the early 90's with initially frequent obstructions supposedly caused by adhesions which were caused by massive endometriosis and multiple abdominal surgeries (bowel resection accidentally caused by adhesion removal, gall bladder removal, 2 burst ovarian cysts requiring separate removal of the ovaries in my mid 30s , appendix removal and a prolapse of the bladder repair job) then once the adhesions had mostly been dealt with it was assumed IBS was causing the frequent blockages. Then from 2006 onwards I have been having regular colonoscopies to remove polyps and there they discovered an inflamed ileum which was thought to be Crohn's (IBD) and subsequently an accidental gastroscopy (LOL the clinic accidentally booked me in for both a gastroscopy and colonoscopy and since I had been having a lot of digestive issues I told them they may as well go take a look) they found bleeding stomach ulcers and barrette's oesophagus. I had had years of indigestion, reflux and heartburn which I never had investigated as there were too many other things cropping up. Anyway now it's believed that all these issues are Wegener's related. I have not had any major bowel issues since starting the treatment. My stomach seems to be settling. The mouth ulcer is healed. The eyes are perfect and the sinus is much better since starting the bactrim. although the last 2 weeks there has been a bit of bleeding which I guess is part of the flare. So I tend to believe the Gastroenterologist at the hospital who said I didn't have Crohn's. It's all due to Wegener's.

But they feel confident that as my vital organs are fine they didn't have to do such an aggressive treatment straight off and are trying out this more gentle approach. They were hoping to keep me only on MTX eventually and get rid of the PRed altogether. We'll see I guess.