newly diagnosed cheilitis - help!!!

On behalf of my son, 28, just looking for a friendly ear - then if I'm in the right place will tell him to register!
After 9 months of sore swollen peeling lips/cant talk, eat, smile or do most things......we have 2 possible diagnoses. Either granulomatous cheilitis or pyoderma. We realise it can be long term. He's tried steroids, an infliximab infusion, and is currently working his way up to a full dose of azathioprine. Theres some improvement but still a long way to go.
Any support would be very welcome.
Thanks,
Lizzie