I have had WG for 15 yrs and am currently having my 2nd flare up. I was admitted to hospital in Leeds in January before this flare up was diagnosed with ? right lower lung pain/ Kidney pain. It was never treated or fully investigated as I was 300 miles from home and they wanted me seen locally. I have had 2 Rituximab infusions in Jan and Feb and am currently on 20mg of Prednisalone . For the last 2 weeks I have been suffering with acute shortness of breath. I was admitted for 3 days as they thought I had a clot in my lung. A CT shows ground glass lesions on my lungs.What is this? Now , my consultant, is not concerned about my CT and says I have a chest infection. I have no cough, pyrexia or sputum! I finished a 5 day coures of Co Amoxiclav last Tuesday I get extremely SOB just walking up the stairs. I am waiting to be referred to a Rheumatologist. Previous to this I was fit and well.
I am so scared at the moment, no one seems to be listening to me, as I have never had Rituximab before I dont know how long it is active in my body or even if it is working. What is happening to me? I'm terrified this is it for the rest of my life.