I woke up Friday morning and the vision in my right eye had gone. I have been seeing Consultants in Vascular Clinic, Rheumatology Clinic, Dermatology Clinic and even have went private, even with having all the text book symptoms and 2 positive p-anca blood tests I have no definitive diagnosis. It is so frustrating. I am now on high dose steroids; high aspirin and will soon be switching to anticoagulant medication and now also have been given cholesterol tablets which I now have to take for life. I saw the Stoke Clinic Consultant on Tuesday who organised scans of my neck arteries and they are perfect. I now have CRAO and they tell me my sight in my right eye won’t come back.
What I don’t understand is now I have to go back to the Vascular Clinic consultant who I saw a couple of years ago who told me YES u r a definite text book candidate for vasculitis BUT you don’t look ill!!! No I don’t look ill all the time and I was obviously having a good day when I saw him. I’m female and 61 years old.
Has anyone here had this experience?
Sounds like you've had a lot of experiences which haven't been good. My eyes are involved in my Vasculitis and have been from the start. I was given a diagnosis of GPA because of my high ANCA, lung, kidney, joint, nose and eye involvement. My Vasculitis consultants prefer the term ANCA Associated Vasculitis as they say there's so much overlap between the different ones. This summer my sight has been threatened again as my temporal artery got involved so I'm on aspirin now and have been slowly tapering the prednisolone so I'm currently on 9mg. I'm sorry to hear what you've been through and hope the treatment stops any more problems.