My partner had a confirmed diagnosis of pulmonary fibroris yesterday at the local hospital based on symptoms and CT scan. His suggested treatment was do nothing and review in 3 months. I wasn't very happy with this especially having seen the video link on this site which suggested that pirfenidone can slow it down. The local hospital said it was only available on trials but suggested he could refer us to Papworth. I had a friend who had PF and he went to Royal Brompton.
Ayone know anything about either of these two hospitals and the staff.
Has anyone any experience of pirfenidone?
Steriods was the only option offered at a later stage and the picture painted of the side effects did not good. What are others experiences?
Sorry for the all the questions but I am just beginning this journey and trying to start at the best point for my partner and with regard to selecting a hospital I don't know where to start.