FIL has been diagnosed with this after several years of misdiagnosis. His heath has deteriorated dramatically recently. He is currently undergoing scans and has begun various medications (immune suppressants). MIL has told me this evening that his prognosis is poor, less than 12 months but I get the impression that they have done their own research via google to reach this conclusion.
I admit to having done the google bit myself too and it does paint a rather grim picture but I was hoping for some real life experience from someone on here, good or bad.