I saw my hepatologist today to discuss whether to start medication for autoimmune hepatitis. I had previously told him that I was reluctant to take steroids after the horrendous side effects I went through the last time I took them for polymyalgia. My daughter who is a scientist for big pharma came with me as she is far too well informed and worries about me. He started off saying that a diagnosis of cirrhosis is life changing. He said that if you were diagnosed with cancer you would automatically be seen by various consultants and started on treatment but a diagnosis of cirrhosis isn't really treatable and people have a negative attitude to cirrhosis and almost all think it's drink related. He said that it's a very lonely disease and people don't necessarily get the support they need.
He thinks that my autoimmune hepatitis may be burnt out now which is why my bloods are barely raised. We have now decided that he should refer me to Dr. P**** at Manchester royal as he is considered to be an expert in AIH and difficult to diagnose liver disease. I asked to be referred to Dr. P***!! almost a year ago! Stepping hill cancelled the referral and said I should be treated by them.