Thought I'd start a thread for anyone reducing or trying to get off the pred (I know there was lots on the old board about this).
I'm trying to get off it at the mo. Only been on since last Nov, and only low dose. It's kept my lungs ticking over pretty nicely. Tried to come off at the begining of the year, reducing v gradually, but PF was slowly going down too, and doc put it back up again. Saw another doc last week (also at resp. clinic) and he has me reducing again, but different protocol. Lungs felt it straight away, PF dropped straight down. I've given in today and put pred back up - and I KNOW I shouldnt do this unilaterally, but I've been signed off by consultant and dont have a GP appointment till next Monday, and am not bad enough to be an emergency.
Anyway, just wondered if other people have had any advice about reducing pred, other than to do it gradually! Like, have they been told before they start at what point to stop if they are getting worse? When to up things, and to what level? Or whether you just need to persevere and hope things pick up? Also, whether using ventolin on a regular basis while reducing would help? Am using it regularly now lungs are rough again, but didnt start off doing this, and wonder if it would have helped?
Hope others are having more success!