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I cannot get a diagnosis after 2 years of high doses - 60 mg prednisone and a recent start on immune suppressant axathioprine which is having no affect thus far. I have most symptoms of wegeners, the most prodominant being copious thick green blood tinged phlegm from throat and nose. They say it's cryptic organizing pneumonia which is daft as that has a non productive cough. I have seen dr Jayne at Addenbrooks and am currently under a rheumatologist at West Suffolk. They agree I have systemic symptoms but negative anca - just positive p anca. I cannot get below 40 mg of pred without joint pain, phlegm, rhinitis, conjunctivitis, dry eye, ocular mytosis and more. I cannot find any other disease that causes the phlegm and flue like symptoms it involves that is not bacterial which keeps leading me back to wegeners. Rheumy is calling it a steroid responsive illness. I feel they are missing something. Please if you have any thoughts let me know.
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